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Angel Of July
Angel Of July
~Sitting in splendor
In heaven's sweet place
Showing the beauty of wings
Made of lace
Surrounded by flowers
With swans in her midst
The beauty of nature
Her glorious gift
Playing a tune that
Comes from on high
Gentlest breezes
This angel July
Sends love with her heart
That whispers on land
As trees rustle gently
In harmony grand
An angel so peaceful
She's sent with great love
Angelic in nature
Reflected above
Let her just fill you with
Warmth and all care
An angel to bless you with
Dreams we can share
Look to her innocence
Her power and might
While gently she sends you
All love that is bright.~
 
July 13, 2005
Born in 
Omaha, Nebraska 
on July 13, 2005.
 
August 3, 2005
August 03, 2005 at 02:15 PM CDT

8/3/05
Madison Lee Foell was born on July 13th with a 2 chamber heart (one atrium and one ventricle), mitral atresia (the valve on the left side of her heart is missing), tricuspid regergitation (valve on the right side of her heart allowing blood to follow back through) and a small & underdeveloped right lung. She has since had surgery on July 19th to close her ductus (the hole in her heart that all babies are born with that usually closes on its own w/in days of birth) and they also banded her pulmanary artery (to control the amount of blood going to the lungs). She has recovered well from surgery and even moved from the PICU to a med surgery floor as of last Friday where she is still closely watched and monitored- just not as much as she was in the intensive care unit. She is off of her ventalator and for the most part is breathing on her own. At times they have helped her by giving some additional oxygen support. She will need additional surgeries- probably at least 3 more & as of right now we are not sure when the next one will be or if we will even get to come home between the first one and our next one.
One of our primary concerns at this point is her right foot. She has a blood clot caused by a heart cath test that was given to her the day before surgery. The doctors left the line in for an extra day as a way to give emergency meds to her if needed- and it has resulted in a dark and dusky colored foot due to a blood clot settling there due to the interruption of the flow of blood through her leg. Overall the foot is starting to look better but the big toe and the toe next to that one are still a dark blueish black & wrinkled similar to a raisin. We hear babies are resilient & are still holding out hope that the whole foot will recover- including the two toes that look so bad. The doctors (including docs from plastic surgery and vascular surgery) all agree it is looking better but are not yet sure if the whole foot will make it or not. More time and prayers are needed for that area.
Madison has made some progress this week eating from the bottle. Madison is given 50ml of fortified(w/ extra calories to beef her up) breast milk every 3 hours. She weighs roughly 5lbs 7 oz as of earlier this week. If she is awake and hungry- we will try to bottle feed her whatever she will take. The remained is given through her feeding tube. Yesterday she ate the most at one feeding that she has ever taken- just over 15ml. I was very excited. The feeding team from Childrens Hospital has visited her once and are going to show us some exercises we can do with her to stregthen her sucking ability. Right now the whole suck, swallow and breath routine that comes naturally to most babies is a workout for her.

 
August 5, 2005
August 05, 2005 at 02:41 PM CDT

8/4/05- In rounds yesterday morning the doctors discussed her steady progress in gaining weight and are happy w/ her progress. She weighed in that morning at 2.68kg. Doctor Duncan has always said 3.5kg is the magic number we are trying to get to. At that weight he feels most kids show they are able to handle the next stage of surgery.
Rt Lung- X-ray of the lung itself did not show much change. Possibly a little more airation in the lower lobe. Left lung still looks great. Dr. Duncan & Dr. Hammel came in later in the day to again discuss the unidentified masses on her right side. One is up high by the upper lobe and a mass by lower lobe or possibly on or by her right kidney. The CT Scans on a small baby make it hard to figure out what the masses are- both doctors agree they need to get the radiologists and the rest of the doctors together to discuss what our next steps are regarding the masses. She still receives her CPT treatment 2x daily.
Eating- Still doing well here. Overnight she at 1/2 ounce at one time (roughly 15ml of the 50ml she gets every 3 hours). The doctors and feeding specialists were all impressed.
Foot- Not much change here. The dressing is changed 2x daily with Sulfadiazine cream (an antibiotic) applied all over the foot & between the toes to prevent further infection.
Short term goals continue to be-- work on feedings either by feeding tube or by mouth, grow and gain weight & maintain appropriate oxygen saturation levels.
Thank you for your continued prayers and support. We love you all so much.

 
August 5, 2005



August 05, 2005 at 03:45 PM CDT

8/5/05 Update-
We have now added photos in the photo gallery and have tried to reply to some of your message board responses. Go under your message to find our reply. Thanks again for all your support.

Right Side- Today they have decided to put a cathader back in to collect 24 hours of unrine from Madison. This will help them to try to rule out some of the possibilities of the unidentified masses on her right side. They are checking to see if the masses are some sort of tumor- whether cancerous or not. They were unsure of the turnaround time of getting the results of this test- may be sometime this weekend or early next week. Next chest xray is ordered for Saturday.

Eating and Weight Gain- Small weight gain to 2.69kg. Overnight after eating her saturation levels dropped so they have ordered a swallowing study for Monday. This will allow them to see as she swallows where her intake is going and if she is having any reflux. They also started her on Zantac today- which will help neutralize her acid.

Labs- They were also able to draw blood from her pick line today-therefore they may increase her Lovanox(blood thinner) b/c lab came back that her levels were a little on the low side. For the past week or two they have had no success getting enough blood drawn from her veins so this was good to find out.

 
August 8, 2005
August 08, 2005 at 02:50 PM CDT

Madison had a pretty good weekend. She has continued to get stronger by eating more from the bottle at feedings. A couple of times this weekend she ate almost 30ml (1 ounce). She weighed in this morning at 2.8kg. Her swallowing study that was scheduled for today was moved to tomorrow morning.

Rt. Side- X-rays from Sat. and Monday morning don't show anything new. We are still waiting on lab results from the urine they collected over the weekend- hopefully we will get those sometime tomorrow. They are still talking about doing another CT Scan later this week to look at the masses- see if they have grown, shrunk or remain the same.

Heart- they did an echo this morning- don't have results back yet but they are looking to see if pa band is still the correct size for her growing body. If the band is too small- it could cause the size of her heart to swell (by the extra effort it is making working harder) and be contributing to her lower saturation levels as of lately.

Saturation Levels- the doctors have noted a little downward trend in Madison keeping her saturation levels in the range they would like them to be- also causing her to look a little dusky from time to time. Talking with Dr. Danford today they feel any combination of the following three things could be causing this
1- the pa band may be too getting too tight as she grows.
2- it could have something to do with her small right lung & what is going on in her right chest cavity.
3- she may be refluxing- the swallowing test tomorrow will help determine if this is a problem.
The tests scheduled for this week will help them to determine which of these might be the problem.

Dr. Duncan, her heart surgeon, has been dropping hints that her next surgery (the Damus-Kay Shunt) will probably been sooner than later. He mentioned maybe in 6 weeks versus the 3 or 4 months we were thinking it would be. It sounds like we will be here in the hospital that entire time too. Of course, many variables will help determine when that next surgery will be- so things could change. We will keep you posted.

 
August 10, 2005
August 10, 2005 at 05:02 PM CDT

Heart- I talked to Lisa this afternoon and she confirmed that the echo done earlier this week came back fine. It shows the ventricle is working well- and not over-working. Looking at the pa band- she was not sure by way of the echo if the band is getting too tight. Again she said one of the best ways to figure out if the band is too small is to watch her saturation levels to see if they are trending lower.

Rt Side- The urine results came back negative for the neuroblastoma tumors. I asked if that was good news or bad. She commented it is really both. Good that it is not the tumor- b/c that type of tumor is cancerous but treatable in children. Bad b/c we still don't know what those masses are and now need to figure out what our next plan of action is to try to figure them out.

Eating and weight gain- Although she has lost a few kilo's over the past couple of days- weight gain is still looking good overall. Dr. Duncan says not to focus day to day but look at the weekly trends- where she is still showing upward trends. Her swallowing study went well yesterday- showing the milk is going down her esophagus correctly and she is latching and sucking better than before. The only comment was to how quickly she tires out but that is to be expected w/ heart babies. She continues to eat anywhere from 10-20ml consistantly at most feedings when she is awake and alert.

Other Misc- Foot is still making progress but big toe and second toe still look questionable. A CT Scan is scheduled for tomorrow- hopefully we will know more about her right side from the results.

 
August 15, 2005
August 15, 2005 at 03:43 PM CDT

Hello everyone- sorry for not keeping the page updated the past couple of days. Here is what has been going on--
Over the weekend Dr. Duncan told Nick that they would be having a big pow wow about Madison this morning in there weekly cath conference. He also mentioned the possibility of doing surgery again this week or next week. The options still remain probably one of the following three-
1) Loosen the pa band. This operation would be similar to what she already went through. It will just buy us more time- not correct anything with her heart. Why buy more time?? To allow her to continue to grow and gain weight so she is stronger for the next operation. It would allow more blood to the lungs- helping her satuartions which have begun to trend lower and hopefully lessen her reliance on the oxygen they are giving her. The doctors have said she is about on as much oxygen support you can give someone her size.
2) A procedure called Damus Kay Shunt
3) A procedure called the bilateral Glenn
Dr. Duncan is going to stop by this evening and visit about what he believes we should do, why and when. He is also going to contact general surgury to discuss the masses in her right chest cavity. The CT Scan shows the upper mass is thymus- all babies have this gland. It is usually in the center of their chest- hers is shifted to the right bc of the size and positioning of her heart. THe lower mass on top of or near the kidney (maybe pushing through her diaphram) is the one they are still trying to figure out. It is not growing and does not seem to bother her at this time.

Weight gain/ Eating-- Weight gain has continued to trend positively. She is really filling out in her face. Over the weekend- she finished the entire 50ml for one of the night nurses. We moved her from a slow flow nipple to a medium flow bc she was sucking so hard when she ate- it would collapse the nipple. Now she consistently eats 30-40ml from the nipple at a feeding. She is really doing well here!!

Hips- On Saturday they place her in a harness bc one of the doctors felt her hips were loose, possibly dislocated. An ultrasound this morning shows her hips are not dislocated(yeah) but are a little loose. They feel this is normal for newborns but have decided hers are a little too loose. She will have to stay in the harness for 4-6 weeks or until they feel it has help set her hips tighter.

This morning we noticed her pic line appeared to be leaking. This line (similar to an IV but can remain in place for months at a time as long as it does not get infected) was used to give medications and in her case even draw blood. They can really repair a bad pic line but were going to try to run a new one in the same spot but were unsuccessful. This is a problem bc they now have to figure out how they are going to give her meds and how they are going to get blood for the labs they need to run. This is another question posed to Dr. Duncan- we are waiting to hear back.

Her foot continues to improve slowly everyday.

Madison was able to go to the mass at the hospital chapel with Nick and I this past Sunday. It was our first family outing together and an appropriate one :-) It was fun to feel like a normal family together for a few minutes. Madison also turned one month old on Saturday.

 
August 16, 2005
August 16, 2005 at 10:48 AM CDT

THE POWER OF PRAYER
All your prayers continue to work miracles for Madison. Talking to Dr. Duncan last night we decided her saturations were up over the weekend and all day Monday so a surgery he had scheduled for Wednesday is now postponed!! We were even able to ween her off of some of the oxygen support she was getting late last night. We are taking things day by day- watching the signs she gives us. We want to postpone loosening the band for as long as she is able to comfortably tolerate things. If she can go another 5-6 weeks and continue to gain weight- we can possibly do one of the other surgeries to begin to correct the issues with her heart. Dr. Duncan said he doesn't know why all of a sudden her saturations have begun to improve-- but I think I know why & so do you....so thanks for keeping us in your prayers!!

Today they are re-evaluating what to do about the pic line we lost yesterday and waiting to hear from general surgery about the mass in her adrenal gland.

Thanks again for all your prayers, love and support.
Nick, Kim and Madison

 
August 17, 2005
August 17, 2005 at 08:44 PM CDT

Eating & Weight Gain- Yesterday we increased Madison from 50ml to 60ml each feeding. She seems to be handling it just fine. We are still nipple feeding her as much as she will take during the day and overnights just sending the food through her feeding tube as to not wake her from her main job- growing and getting stronger. She is right around the 3.0kg for her weight- 6lbs 6oz roughly.

Right Side Problems- I talked to Dr. Reynor(from general surgery) this evening about the masses. We are comfortably sure that the upper mass is Thymus. The lower mass is now again believed to be Neuroblastoma. This is just our best guess at this time from looking at CT Scans and not having done a biopsy. Tomorrow the oncology people are going to come and visit us. If they agree with Dr. Reynor- we will then develop our plan of action. Most likely, we will wait and see. They do not want to go in right now to do surgery to remove the tumor. I hope to have more information for you on this tomorrow.

Heart- Her saturations continue to be where we want them so still no immediate plans to do anything different.

 
August 18, 2005
August 18, 2005 at 05:25 PM CDT

I don't have a lot of new news for you all today but Dr. Duncan always tells me "The absence of bad news is good".

The oncologist did stop by today and discuss the neuroblastoma diagnosis for awhile. In brief summary- the earlier it is found the better. Often times when it is found in newborns it may self correct by just going away on its own. Treatment is usually only a surgery to remove the mass- no radiation or chemotherapy (in most cases). Since we don't want to subject her to any surgeries right now- our immediate plan is to keep a watchful eye on it. When we do her next heart surgery, if Madison will let us we will take a piece so we can biopsy it to make sure of the diagnosis. Then eventually it will be removed.

Everything else remains the same and continued improvement in all areas.

 
August 22, 2005
August 22, 2005 at 08:51 PM CDT

Madison had a good weekend. We talked to Dr. Duncan Sunday about the possibility of bringing her home. He said maybe by the end of this week if things continue to go well. We keep taking things day by day. I didn't get to talk to any of her doctors today- so I will try to update you tomorrow to see if we are still working to go home later this week.

Her saturations have stayed up and for the past few days she has been off the support of oxygen. Her foot is slowly looking better every day.

 
August 24, 2005
August 24, 2005 at 01:35 PM CDT

The doctors came in yesterday & we are still trying to figure out when we will get to go home. One of the doctors mentioned not until she reaches the 3.5kg (7lbs 8oz)- right now she is 3.06kg (6lbs 12oz). She gains roughly .02kg a day on average- at that rate it could be awhile. I am keeping on them about getting out of here for a short time between surgeries- if she is ready and doing well. So there are some conflicting messages between all our doctors about when we could go home but I think it is still possible maybe next week. I have been busy learning all the things we will need to be able to do when we get home like giving her shot, changing her foot dressing, putting in an NG(feeding tube) if she pulls it out (which she is starting to do) & we will need to take a special CPR class for her condition.
She is getting a little oxygen- usually only when she is in a deep sleep. Otherwise her saturations still look good.
The ortho doctor came by this morning- her notes read they do not feel a click in her left hip but to leave on the harness as a precautionary measure. We are checking into that further bc I don't think it is necessary if the problem is no longer there. Hopefully she will get out of that soon.
We will keep you updated on the progress we are making getting back to Storm Lake. We thank you all again for the prayers, support and your nice messages you leave us on the message board. They really brighten both Nick and my day knowing we have such wonderful family and friends out there. We love you all.
Nick, Kim & Madison

 
August 30, 2005
August 30, 2005 at 01:36 AM CDT

Daddy Day Care Update!!
Madison is doing just what the doctors want her to do. She is gaining weight- today 3.27kg or in my terms 7.35lbs. I don't know when we will get to come home yet- I know that is what everyone is wondering. She is still wearing the pavlic braces for her hips but maybe Tues. we will be getting out of those. The plastic surgery team came in today and said that her foot is improving just keep cleaning it 2wice a day and redressing it. Madison is more active and awake each day also. That is all I have for now sorry that Kim isn't here to put this in complete sentences and all of that stuff!

Thanks for all of your prayers and support.. it is working!

 
September 2, 2005
September 02, 2005 at 04:02 PM CDT

Part II of my very wordy message :-)

Everyday we will have to weigh her, check her saturation levels and heart rate, document her feeds and take note of anything we feel is valuable for her team of doctors to know and send those into one of Madison’s nurses- Lisa. We will have regular visits here in Omaha and with a pediatric cardiologist in Sioux City every 2weeks, if not sooner.

Dr. Duncan and Lisa have talked to us extensively about going home & the need for us to take extra precaution with Madison to keep her healthy. Heart babies just can’t handle a simple cold or the flu as well as a normal healthy baby. The biggest threats to Madison are people who are sick and little kids because they are germ carriers. We have really gotten into the habit of washing our hands regularly and will need to make sure others around Madison do the same. Although we would love to see many visitors and show off our little miracle Madison- we know that is not what is best for Madison at this time. We need to make sure that visitors understand that they shouldn’t expect to hold Madison when they come to the house. They also need to stay away if they are sick and let the kids play outside while mom and dad are visiting. So, in short, we’ll have to make some rules for visitors when we come home. We are not confined to our home. We will be able to take her out as we feel it appropriate before the cold & flu season really hits.

So when will we be back to Omaha for another surgery?? We don’t exactly know. The doctors say it is usually around 3-4 months of age when the next procedure is done, but it all depends on Madison. There are many signs Nick, myself and the doctors will be watching for over the next weeks to months to determine the appropriate time for her. I am making the commitment to keep the care page updated periodically. We want to let everyone know how Madison is doing. I also promise to put new and updated pictures of her out there. Many of you have been giving me grief for not doing a better job of keeping those updated (& your right). Thanks again to everyone for your support. Have a fun & safe Labor Day weekend. We love you and couldn’t have gotten here without you!!!!!

Nick, Kim & Miracle Madison

 
September 2, 2005
September 02, 2005 at 04:03 PM CDT

HOME!!! (Part I)
That is our favorite word today because that is where we are ALL 3 going tomorrow!! The doctors have given us the ok to be discharged tomorrow sometime. I can't explain the range of emotions we are all feeling. We are so happy to finally get to go home as a family. We have been dreaming about this day since we started this journey. I think Nick has asked Dr. Duncan "When will we get to go home?" at least a thousand times :-) We are anxious about leaving here and being all on our own for her care and medicines. We are sad to leave the friends and family that have been so kind to visit us often while we were here at the hospital. We will also miss all our new friends we have made while staying here. The doctors, nurses and other families we have met while staying here have touched our lives. We are so thankful for the wonderful care Madison has received here at Children’s Hospital. Her team here is truly one of the best.

We want to thank everyone who has supported us through this journey. Thank you for your prayers for Madison, Nick & me, her doctors and everyone caring for her. I know that is what has gotten us this far. We thank God every day for giving Madison to us and for giving us such a strong support network of people in our lives.

We have been busy learning how to take care of Madison on our own. She will go home in a car bed- not a car seat. The doctors don’t feel comfortable with her in that reclined position and possibly pinching off her airway. The bed is just an oval shaped flat version of a car seat. She will be on several meds while at home- all of which we have already practiced giving to her. The worst one in my opinion is the Lovenox- it is the shot she gets 2x a day. She will also have a NG (feeding tube) tube. Nick & I have both practiced putting it back in because the doctors have assured us that as soon as we leave she will grab it and pull it out! The reason for the NG tube is she is still not strong enough to take all her milk by nipple yet. She will be on oxygen at night or during any really long deep sleep naps in the day. We also have to change the dressing on her foot 2x a day. It is slowly but surely improving. She only has to wear the harness for her hips at night now & will get checked again at our next visit. By the way- she weighs 3.42kg (about 7lbs 7 oz) now!!

Continued in the next message that will post......

 
September 14, 2005
September 14, 2005 at 12:18 PM CDT

Well- my next update was supposed to be telling everyone how wonderfully things were going at home with Madison. And they were going well until last night. Around 9pm we were doing our usual night routine- Nick was getting her milk ready & I was giving Madison her shot of Lovenox & changing the dressing on her foot. As I was unwrapping the dressing she started to fuss more than normal. That is where we think the "spell" started. She continue to fuss but harder & harder until she was crying and breathing irradically like I had never heard her do before. She started to turn completely blue as we brought her upstairs to get her on oxygen, still trying to calm her down. Things just were not getting any better and maybe a little worse so after that it is kind of a blurr- we called 911, a family friend who is a doctor and asked if he could come out & then to her team in Omaha. She was taken by ambulance to the Storm Lake hospital and the helicopter was on its way from Sioux City to take her to Omaha. Nick & I went with her in the ambulance- it was the scarriest moment of our lives. Upon getting to BV Hopital- they put her on more oxygen & she slowly started to get her color back and her breathing started to return to normal. We don't know why or what exactly caused the episode. My best guess is her foot looks really painful at this stage. It is still healing but is really sore looking.

Madison landed in Omaha around midnight- Nick & I got here around 1:30am. What a long 2 hour drive. We knew when she took off she was stable- so that helped comfort us- but it was still hard to not be with her as she was flown down. We got to experience first hand why Storm Lake needs the helipad at the hopital. Anyone who goes through something like that would understand why the extra time it takes to get the crew from the airport, to the hopital and back to the airport to take off is TOO long. We need that helipad at the hopital because shingles and shrubs can be replaced-- 15 minutes when a life is at stake can not.

Madison is in the PICU right now and looks good. They did an echo and xray last night. Her results came back showing little to no change from her previous ones just 10 days ago. We have talked to her doctors more this morning. They started her on captopril- a medicine that will help her heart get blood out to her body easier. They tried her on it when she was first born- & she didn't tolerate it. Now that she is bigger and stronger- they think she will do fine but want to watch her close b/c it could cause her blood pressure to drop. They will watch her close over the next 24-48 hours to see how she handles it. We should also be moving up to 5th floor med surg later this day.

We will keep you posted and thank you all for your prayers and concern again. We especially want to thank Ag Partners and Bankers' Bank for their continued support.

 
September 18, 2005
September 18, 2005 at 10:40 PM CDT

Just a quick update to let everyone know Madison is back home with us in Storm Lake. We got home later in the day on Thursday. The doctors feel her episode was a vagel reaction. Meaning when she got so upset crying & started to slow her breathing-- the brain sent a message to lower her heart rate and blood pressure too. Any child or adult can have the same thing happen- she just couldn't recover from it. We are thankful that is all it was. They kept her in the hospital for almost 48 hours to watch and make sure she could handle her new medicine- and she is doing fine with it. The plastic surgery doctors looked at her foot- they think it looks just like it should. It will probably be a couple more months until we know the final outcome. The ortho doctors came by too- they don't hear or feel any clicking in her hips so hopefully this week sometime we will get orders to stop with the hip harness.

Monday morning Madison will be discussed in depth again at their cath conference. They are concerned w/ her tricuspid valve & the amount it is leaking. They want to do another heart cath to check things out and get a game plan for her next surgery. Please say an extra prayer for our doctors so they can figure out what is best to do next for Madison. I will update you all later to let you know what they decide.

 
September 26, 2005
September 26, 2005 at 05:45 PM CDT

Going back to Omaha--
The team from Childrens Hospital called Friday to let us know we will be going back to Omaha. Madison is scheduled for surgery October 13th. It must be her lucky number- born on the 13th, first helicopter ride Sept 13th & 2nd surgery Oct 13. Anyway- they will have us down there a few days in advance to do a heart cath. This will help them determine what exactly needs to be done and hopefully corrected. We are going back a little earlier than they had hoped but we don't want to chance her having another vagle episode and it being worse than her previous one.

Otherwise- she is doing pretty well at home. Sometimes we think she has her days and nights mixed up. She is growing and gaining weight really well. She now weighs somewhere around 9lbs 5oz. She is not eating as well as she was from the bottle. We are worried she is starting to develop an oral aversion or losing her instinct to swallow. The good news is she will still suck on her pacifier. We keep working with her daily to get her to eat from the bottle & keep praying it will come back to her because if not it is a long road back. Her foot is still healing- it looks pretty sore but you can see progress being made. The great toe and second toe still look black.
On a brighter note- she smiled a few times at us when we were talking to her. It is fun to see her acknowledge us.
I have tried unsuccessfully to add new pictures to the web page. I will get it figured out one of these days.

 
September 30, 2005
September 30, 2005 at 07:17 PM CDT

Back to Omaha a Little Earlier...
Just a quick update to let everyone know we are back at Childrens Hospital. We were noticing Madison being overly agitated, more dusky more often and her saturations were trending lower & even at our spots checks daily they were too low often- giving her Mom & Dad reason to begin to worry. Thursday we called Omaha to tell them of the signs we were seeing and our worries. They suggested taking her to her Pedi Cardiologist in Sioux City, Dr. Najdawi- who looked her over,listened to her and checked her saturations which were in the 50's & 60's (too low). He said to get her to Omaha to have them check her over and watch her for awhile. At first- we weren't sure if this was all needed but something just didn't seem right too. And that is how Dr. Najdawi also felt. So we checked her into the hospital yesterday evening and now are glad we went with our gut instinct. Something is causing her saturations to be all over the board. One minute you see a pretty pink & calm Madison-- then the next an aggitated, fussy dusky looking Madison. We talked with Dr. Duncan this morning and he feels it is one of 3 things. 1- her refluxing may be causing her saturations to bounce around- making her require more oxygen support. 2- Is it time for surgery? Has she outgrown the band? 3- Is it something viral? It is that wonderful time of the year...germs are everywhere. They are already seeing kids come in w/ all sorts of things.
We don't think it is just outgrowing the band- usually there isn't so much bouncing around w/ the saturations- just a constent downward trend. My gut tells me it is probably a little bit of her reflux but after seeing all the junk they sucked out of her nose this afternoon- she probably has caught some virus too. They did a chest xray- no significant change since the last one. They have all listened to her-& they say she sounds clear.
Today we did 2 things.... First a viral scan is being run. We will get preliminary results possibly tomorrow or Monday but final one's won't be back for 5 days. Secondly, they did another GI study (swallowing study) to see if she is refluxing. I haven't heard back from the doctors yet. She is also an good oxygen support just to keep her saturations in the 70's- 2 liters( at home she was just on room air so quite a difference).
BUT w/ all this not so good news, we did have a positive in the day. During her GI study, they turned Madison completely on her side to get her to take the bottle and swallow- & she did. In fact she drank about 2 ounces of the barium (a sweet drink that they can watch go down & into her stomach). Then back in the room she drank another 20ml of breast milk. We were so excited to see her eating again from the bottle. Before we saw her doing this- the Dr's were talking about putting in an NJ tube (similar to her NG tube but this one goes into the stomach & on into the sm intestine) An NJ tube requires her to be on a constant drip- meaning no more bottle. The question now is what is right and best for Madison. I guess the doctors and Nick& I will have to figure that one out.
I will keep you updated as things progress. I can't say for sure how long we are going to be here but it looks like we aren't going anywhere too soon. Thanks for your love and support.

 
October 4, 2005
October 04, 2005 at 07:13 PM CDT

I finally got some new pictures on the page- hope you enjoy them.

The doctors have decided to move up Madison's heart cath to this Friday. This will help them to decide what corrective surgery they will do next week. They will enter her artery in her good leg from what I know right now. We believe Madison should handle the procedure better this time since she is bigger and stronger. Also, they will not be leaving the line in so we hope to avoid any complications like what happened to her foot last time.
We have not heard back yet on the final results of the viral panel they ran. Initial results were negative- final results should be back tomorrow. They did insert the NJ tube Saturday morning so she is on a constant drip feed. So far this has not really reduced her refluxing. We are still trying to figure that out.
More updates to come...

 
October 5, 2005
October 05, 2005 at 03:46 PM CDT

Just a quick message to let everyone know Madison's viral panel came back NEGATIVE. Yeah!! So we can keep going forward w/ plans for the heart cath this Friday morning. They did a CT scan of her upper chest this morning. Looking closer at her lungs and the upper mass we believe to be the thymus gland. Not much else to update right now.

 
October 6, 2005
October 06, 2005 at 08:46 PM CDT

The CT scan from yesterday went well. They think nueroblastoma on her kindney has gotten a little smaller. We will do the heart cath in the morning at 9 a.m. and will try to give the update later in the day.

 
October 7, 2005
October 07, 2005 at 01:41 PM CDT

The cath is over and done. Madison handled it well. She is back in her room recovering- a little sleepy yet. Dr. Amean & Dr. Fletcher have both come to talk to us about the results. They found that the pa band they put in place back in July has slipped or moved up her pulmanary artery- pinching of the right pa- not enough blood is going to the right lung. They will have to do something next week. For sure- remove the pa band that is now in the wrong place. We hope the right pa will just sort of pop back open, but if not it will also have to be repaired. This is what is causing her saturations to be all over the place- putting her on a higher watch status now. Does this warrent her surgery to be moved up next week- possibly but they are sooo busy w/ heart babies right now. I believe they have 29 in right now. Dr. Duncan is in the OR all day and into the evenings. So we will have to wait and see where Madison falls in the deck. Dr. Amean and Dr. Fletcher will consult w/ Dr. Duncan. We hope to talk to him later tonight or possibly this weekend. They will again discuss Madison in depth Monday morning- trying to get all the big brains together to get some action plans ready. I will update after we talk w/ Dr. Duncan. Thanks for all your prayers. Nick, Kim & MM

 
October 11, 2005
October 11, 2005 at 09:54 AM CDT

Madison had a good weekend and a good Monday. She was all smiles yesterday several different times. It is fun to see her happy. She continues to struggle w/ reflux- but resolving that is now on the back burner w/ her surgery scheduled this Thursday. Nick & I have noticed more signs that it is time to fix something with her heart. Her circulation isn't as good as it was- one minute she is fine & the next she is clammy and sweating. She just seems more agitated at times too.
They discussed her indepth this past Monday morning. Dr. Gambener (a cardiologist) & Megan (nurse practicianer) came to talk to me yesterday. They have decided something needs to be done with the band- probably removing the existing one and replacing it on her left pa only. This is bc of the small right pa- it is so constricted already. I think they are hoping this will help open it a little. Also- Madison has a moderate plus leak w/ her tricuspid valve. This is causing high pressure in her atrium- therefore too high of pressure in her pulmanary arteries. They need to fix this if she is ever going to be able to move on to a second phase surgery- the Glenn. To put it into perspective for me the cardiologist said it was either this or a heart transplant- but they feel this is a better solution at this time. I have more questions at this time then answers. We are waiting to talk to Dr. Duncan sometime later today. We do know the surgery will be a major one w/ plenty of risk for Madison. We hope to know more later today. We appreciate everyones continued support and prayers- we know Madison really needs them this week. Thanks- love Nick, Kim & Madison

 
October 12, 2005
October 12, 2005 at 01:06 PM CDT

Kim and I talked with Dr. Duncan last night about Madison's surgery on Thursday. We are a little bit more comfortable with proceeding with surgery. They will take the band off that they put on pulminary artery. That band has slipped up and cut off some flow to the right lung. They will then put on a new band on the left PA only and not on the right. This will then put less pressure on the left lung and more flow to the right to help it catch up since the original band has cut off the supply of blood up to now. Then next thing they will do in surgery is to fix the Tricuspid Valve. The TV is severely leaking which is causing Madison to have to work that much harder to push blood through her body. This valve is also doing a lot of other things that are not good for her but is to hard to type to explain. They will also take a look at her two toes that we have been taking care of since the mishap after her first heart cath. There is a good chance that they will remove the big toe and part of the second toe now that we know for sure that she will loose them down the road.

During surgery Madison will have to go on the heart-lung machine which will do her breathing and will pump blood for her while they work on her heart. Getting Madison opened up and hooked up to this machine will be one of the hardest parts of this surgery. The surgery should begin sometime between 12:30 and 1:30 and is expected to go for 4-5 hours. That is all for now we will keep you all posted later. Thanks for all your thoughts and prayers.

Nick and Kim and Madison

 
October 12, 2005
October 12, 2005 at 05:02 PM CDT

Minor change of plans they are going to start the surgery Thursday at 7:30 A.M. instead of 12:30ish which is what we said earlier. Thanks hope you all are enjoying the nice weather this fall!

 
October 13, 2005
October 13, 2005 at 04:42 PM CDT

Madison came out of surgery about 3pm. She is now in the PICU. Surgery went reasonably well. They put a band on the left pa & worked on her tricuspid valve. Dr. Duncan feels they improved the leaking from moderate plus to just moderate leaking. There is not much of a valve there for him to work with so he did all he can do at this time. She did not like being messed with at all- had several rapid heartrates, all of which they were able to control. Her heart is now being paced to keep her from going into them again. She is also on about 10 meds to keep everything else in line.

They got a good look at her right hypoplast lung- it is about 1/4-1/3 the size of her left lung. Much smaller than they had previously thought. They checked her pressures in her atrium and pulmanary arteries-- still way too high and they are not coralating with each other. This means two things- can't do next stage until they are lower because pressures are too high at this time. We will wait and see, rechecking them 3 to 4 months from now. The fact that they are not coralating means probably more problems with her lungs. They also removed the dead tissue from her great toe and second toe today also.

Dr. Duncan said the next 24 hours will be critical. We will regroup with him sometime next week to see how her weekend goes and how things are progressing.

Thanks for all your nice messages, thoughts and prayers. This journey would be even longer without the support everyone has given us. We love you all. More updates later..

Nick & Kim

 
October 14, 2005
October 14, 2005 at 04:24 PM CDT

Madison is still resting comfortably in the PICU. She gave us some excitement yesterday evening having 7 episodes of the SVT (supra ventricular tacicardia). Her heart rate would jump up around 250 bpm & her pressures dropped often to 0. Nick & I happened to be in with her when they occured- very scarry. They used medicine and the defibrillator to bring her back down. Overnight they had some trouble keeping her blood pressure up. They have started her on more medicine and increased some of the previous doses to keep it controlled. She is currently on...
Fentanyl- a pain & sedation med
Versed- sedation & amnesia med
Antibiotics- to prevent any post op infections
Zantac- to prevent stomach ulcer
Epinephrine- to help w/ low blood pressure, makes heart pump harder
Dopamine- another blood presure med
Milrinone- help her profusion, makes it easier for her heart to pump
Amiodaron- to help prevent the SVT episodes
THey are also using some theraputic paralization to keep her from moving too much.
In rounds this morning they were concerned w/ her low blood pressure overnight & this morning, low kidney output & the fact that she looks clamped down (meaning very pale and cool to the touch). Dr. Duncan's team isn't too concerned w/ the low output yet- often after surgery babies have little output w/in the first 24 hours. They are treating the low blood pressure and some of her medicines have helped w/ her poor circulation.
She has had one SVT episode today- treated quickly w/ medicine only & lasted only a few seconds.
To sum it up- Madison is very sick right now but we all know how strong she is & she will pull through this too. We will update you more later.

 
October 15, 2005
October 15, 2005 at 02:06 PM CDT

Madison had a nice & quiet night. Today in rounds they decided to increase her lasix to help remove some extra fluid with the hopes that tomorrow we can start to decrease her Epi (one of her blood pressure drugs). She is still not having enough urine output but they are hopeful that will get better soon. They changed the dressing on her foot- Nick & I were able to see what was removed. They also changed the dressing over her incesion. It is much longer this time but it looks good.
Not much else is going on- Have a great weekend.

 
October 16, 2005
October 16, 2005 at 10:56 PM CDT

Madison is stumping all of the Dr's today she is having some heart irethmia's (Nick is typing this update sorry for the spelling errors) that they can't figure out why. This means that her heart rate is down but her blood pressure is handling it. She is still having some moderate SVT's but not near as frequent as before. Madison is retaining fluid still by having more put in her than she is peeing off. I am sure that she will be of discussion Monday morning at the cath confrence and Kim and I will update you sometime after that when we find out the next plan! Thanks for all of your continued support! Nick, Kim, and Madison!

 
October 18, 2005
October 18, 2005 at 12:00 PM CDT

Madison had a good 27 hours of no heart troubles, then last night around 10pm she went into 2 SVT's. They had to use the defibulator again on her. She is handling them better- her blood pressure stayed w/in parameters.
We had talked w/ Dr. Duncan earlier in the night for a long time about Madison and were hoping we were done with the SVT' & such. We just keep taking it one day at a time with her. We hope to not increase any of her med's and get through the next few days with no more problems. Then we can take very small baby steps to see if we can lower her meds. We will re-evaluate things again in a few days or go to plans B, C or D. They are back to the cath lab, back to surgery or heart transplant. We don't really want to do any of those things now so we keep praying she will start to make progress to recovery. Thanks for your love and support.
The Foell Family

 
October 19, 2005
October 19, 2005 at 04:47 PM CDT

Madison had a great day yesterday. No episodes of anything- no other changes were made. That was great b/c that was our plan. Then last night she had another SVT at midnight and this morning around 6am. In spite of all this- we still feel a little progress is being made. The doctors have lowered the dopamine 2 steps down and just started to lower the epinephrine about a 1/2 step down. Now we will have to watch and see if her blood pressure stays good to see if we can continue to decrease the meds. The goal tonight is to get her completely off the epinephrine. ALthough she needs these meds to help w/ her blood pressure- they can also be a cause of the SVT's. We hope to notice less SVT's with her coming off the epi. They also began to give her 1cc an hour of breast milk- so not even an ounce a day but at least it is something. Yesterday was also the first day she was fluid negative- she peed off more than they put into her. It was only negative by 15 - 20 cc but its a start. She is so very puffy- we hope she will continue to be fluid negative to help with that. They also started her on breast milk- 1cc an hour, less than an ounce a day but its better than nothing. More later- Nick, Kim & Madison

 
October 20, 2005
October 20, 2005 at 12:05 PM CDT

Quick update! During the night Madison had an episode where she lowered her blood pressure and it also did something else but I can't remember. Well anyways they had so shock her again to get her to come out of it. So today they are putting her on a high powered drug called emnorall which will lower her heart rate. This drug could make her better fast or not so good. This will start around one this afternoon. Will update you all later!


Kim and I would love to write back to all of you that have wrote us notes but just don't have the time or don't always know what to say. We can't thank you all enough and we love you all for what you have done for us and our families!

Thanks Nick, Kim and Madison!

 
October 20, 2005
October 20, 2005 at 06:12 PM CDT

Madison went into tacicardia (SVT) at 12:11pm today. Although we don't like for her to have them- it was nice that it occured during the day shift so her doctors could be there and learn from it. She was handling the episode fine so they let her in it until about 1pm when her pressures began to drop. They were trying several things to get her to come out of it but eventually had to use the defibulator again. Since then, they have started the esmorol & slowly over the day have increased it to the amount they feel will help her. Now we will wait and see again if she stays out of the tacicardia and if her blood pressure will stay up too. So far her blood pressure has stayed fine. Her incision and other sites where they have IV's & her chest tube are red and are beginning to look infected because she isn't getting enough nutrition. She isn't getting enuogh nutrition because they don't have any extra room in her fluid intake w/ all the drugs she is on.
Again we are hoping for a good night w/ no more SVT episodes. Thanks for EVERYTHING.
Nick, Kim & MM

 
October 23, 2005
October 23, 2005 at 06:18 PM CDT

Madison has been a good little girl lately. She hasn't gone into SVT since Thursday at Noon. We are keeping our fingers crossed that it is because the new medicine is working. Her blood pressure has remained stable through this weekend too. They were able to stop the procanimine and lower the level of amiodorone. We haven't made any changes since Saturday afternoon. We are hoping she will continue to remove extra fluid. She was fluid negative Fri & Sat- both days by about an ounce. She has a lot more to get off. They also started her on TPN- that is her protein & they also started giving her more calories. This will help her skin to not be so sensitive and hopefully start to heal around her wounds. Her right arm is very sore and red around her arterial line that they use to draw blood and monitor her blood pressure. We are having the wound specialist come by tomorrow to help us prevent it from infection- which would be very bad for Madison.
Thanks for all the warm birthday wishes.
Nick, Kim & MM

 
October 24, 2005
October 24, 2005 at 07:28 PM CDT

Today Madison had a xray, echo and a wound care specialist come look at her. The doctors felt the xray looked almost unchanged. We don't have the results of the echo yet- but based off of those results the doctors will begin to lower some of Madison's meds. They are thinking of starting with the epi. Her blood pressure has been great today. She is also fluid negative for the day by 60cc. The doctors feel at least clinically she is showing us signs that her cardiac function is improving- she is peeing more & her lactates & blood gases are strong.
The wound care specialist look at her sore sights & doesn't feel any are infected. She did apply some new creams & ointments to them to help them heal. She also showed us how to properly dress her foot so it can heal.
Overall it was a good day & I hope tomorrow we can start to lower at least one of her medicines. The doctors keep reminding us how sick she is and want to take things very slow-- we will take any progress.
Nick, Kim & MM

 
October 25, 2005
October 25, 2005 at 10:40 PM CDT

Today after rounds the doctors decided to lower Madison's epi & esmolol. The two meds sort of off-set each other so they decided to work with both of them. They made the change at 10am and later that morning her blood pressure began to drop- so they increased the epi again. Then around 1pm she went into SVT. They were able to get her out of it w/o cardioverting her. Her blood pressure remained pretty stable through it. After that episode she was back on both the meds at the levels she started today. The doctors felt maybe they were being too aggressive- so now she is a couple steps down on the esmolol. They want to wait to make any more changes until tomorrow. Madison went into SVT again this evening around 8pm & had to be cardioverted b/c her blood pressure dropped immediately. So I am not sure what changes will be made in the morning.
Thanks for the prayers- we hope for a better day tomorrow.
Nick, Kim & MM

 
October 26, 2005
October 26, 2005 at 07:40 PM CDT

Well Madison was testing us all last night. She had 2 more episodes of SVT after her one at 8pm. After her second SVT her esmolol was increased back to the dose she was on before. So we were back to square one again.
In addition to her SVT's we are watching her right arm closely. It is very sore & red looking around the arterial line that monitors her blood pressure. Her right hand is still very puffy, has less cap refill and is cooler to the touch. The doctors, nurses, Nick & I are all watching it very closely. We want to prevent any problems that line could cause to her hand or arm. We have gone over the pro's & cons w/ the doctors about taking the line out & putting it in somewhere else. The bottom line is she has to have one in w/ all the meds she is on. They know we are greatly concerned about her arm especially after what happened to her foot.
Last night we also talked to the doctors about her sedation medications. After being here so long- we have picked up a thing or two and noticed that the signs they look for when a patient is well sedated just weren't there w/ Madison anymore. It can be difficult to tell w/ anyone who is being theraputically paralyzed but would be just awful to be awake under that & in pain- but not be able to communicate that to anyone. So we talked to the nurse and doctor on the floor last night- telling them why we felt she needed her doses increased. She had been on the same amounts since surgery & was probably growing immune to them. So they increased the amounts she was on last night & this morning started her on a new sedative (I believe replacing one she was on).
This morning in rounds the doctors decided to lower her epi a baby step and also lowered her milrinone. Madison has been fine all day- keeping her pressures up and staying out of SVT. The doctors felt even though we had a few set backs- overall they were optimistic about her progress. Her kidney function is great. She is staying fluid negative- which is a great sign. It will allow her to continue become less puffy & for her internal organs to become less puffy too. When that happens- they feel they will have better luck getting her off of more meds. They also said the kidneys are usually the first to go if things are bad- but hers are doing great. To sum the doctors words up- she is still making it, the SVT's are a problem but we will figure it out & right now she is making small positive progress. So we are keeping that in mind & trying to stay positive too. We know she is doing her absolute best- that is all she knows how to do. We couldn't be prouder of our little fighter.
Nick, Kim & MM

 
October 27, 2005
October 27, 2005 at 08:50 PM CDT

Madison had a great night last night. This morning the doctors were impressed with her color and profusion. Madison was fluid negative by about 100cc yesterday too. We were all excited about this progress. The doctors lowered the milrinone this morning and started giving her inderol (an anti-arithmic) through her NG tube. The goal is to lower the esmolol while increasing the inderol. The inderol is a medicine she was on at home. The other good news is they doubled the breast milk- she now gets 2cc an hour:-) That will help her continue to fight off infection. Late this afternoon they also inched down the epi again. She did drop her blood pressure slightly but seems to have recovered it on her own. Her output also decreased when the blood pressure increased so we will be looking for that to pick up tonight again.
Have a great night-
Nick, Kim & MM

 
October 28, 2005
October 28, 2005 at 12:56 PM CDT

Madison had another quiet night. Her blood pressure has been good but she was not fluid negative yesterday for the first time in days. Her output really went down yesterday afternoon and all last night. She is starting to look puffier in the face again. This morning her output started to pickup a little more, but she is still fluid positive so far today. This morning in rounds the doctors were trying to figure out which one of the changes they made yesterday or possibly in the days before that is causing her to pee less. They decided to increase her milrinone to the level she started at yesterday. They want to make one change at a time to try & figure it out. Overall, they still feel she has made some progress this is just a minor set back that they will figure out.
The nurses said her wounds really are starting to look better too.

 
October 29, 2005
October 29, 2005 at 03:24 PM CDT

Madison had another quiet night. What a good girl. This morning in rounds the doctors lowered her esmolol from 175 to 150 and ordered to discontinue her epi. They lowered the esmolol around 10am & waited a few hours to shut off the epi completely. They are also giving her albumin every 6 hours today (she usually gets it once a day). Albumin helps to pull excess fluid out of her tissue. It must be working- she just had about 80cc come out of her chest tube in the last hour. To help her pee more they gave her another diuretic called Metolazon. Today she has had good urine output. I think the Metolazon is just for today. With all that going on she is again looking less puffy & more like our sweet little Madison. Thanks for everything- more later.
Nick, Kim & MM

 
October 31, 2005
October 31, 2005 at 02:44 PM CST

The doctors have made a lot of little changes the past few days. The esmolol is completely off as of this morning at 10am. Esmolol is an anti-arithmic that we replaced with inderol (which she was on at home). Esmolol can also lower her blood pressure. Now with it off her blood pressure is looking better & her kidneys are responding well by putting out a lot of urine. She is still of dopamine- which is probably helping to support her blood pressure & renal output. So far today she is over 100cc fluid negative & it is very noticable in her face, legs and arms.
They discontinued the breast milk through her NG tube b/c they sent some of her chest tube drainage to the lab- it showed that some of the fats from her feeds were not going where they should. A couple different things could have caused this but it usually self corrects and the only real downside is that she will have to eat a special formula for the next 4 weeks that has no fat. They haven't started the formula yet- we are hoping in the next day or two.
They shut off her vecaroniam yesterday morning. That med keeps her paralyzed. She is still heavily sedated but she can now move. This morning she was moving her toes. It was so great to see her move- even that little bit. She hasn't opened her eyes yet- it could be awhile since she was on the med so long.
She is getting an ultrasound of her right chest cavity this afternoon. Her xray showed a pocket of fluid pushing on her right lung and it not being able to get air in like it should. We have been moving her a lot today to try to get that fluid to shift and come out. If it doesn't on its own they will take a needle in and get it out.
A lot of small steps in the right direction have been made. We know all your prayers have gotten her this far & want to thank you again.

 
November 1, 2005
November 01, 2005 at 07:32 PM CST

Madison ended yesterday over 300cc negative fluid!! She is doing well. No big changes in her medicines. They are very slowly taking her off the fentanyl and versed, which make her sleepy & comfortable. She keeps wiggeling those toes, feet & fingers but will probably be sleepy still for days, maybe longer. They have to be careful and go slow getting her off those two meds b/c they are narcotics and she has developed a liking for them.
The doctors took her off her pacer this morning just briefly- she didn't jump into SVT so they were pleased with that. She is still being paced now and they are trying to develop a plan to get her safely off the pacer.
They gave her about 45cc of blood this afternoon. She just needed a boost. Her blood pressure was just a little lower than it had been- & her output was declining. She developed a low grade fever from it but they aren't worried. They just gave her a little Tylenol & that should break the fever.
Everything is going well in small steps. Thanks again.
Nick, Kim & MM

 
November 2, 2005
November 02, 2005 at 02:10 PM CST

Last night around 10:30pm we got to see something we haven't seen since October 13- Madison opened her eyes!! She opened them about 1/2 - 3/4 of the way, still very sleepy & out of it. We like to think she knows we were there loving every minute of seeing her awake again. It was great & didn't surprise us that she decided to wake up at night- it always was her favorite time!!

She had a good night. This morning in rounds the doctors only made a few minor changes. They increased her lasix again to help her output. They lowered her Fentanayl a tiny bit. They are going to start her on feeds again. This time a special formula for 2-4 weeks until the chylothomax fixes itself (we hope). They switched over a couple of her IV meds to an oral med. They lowered her vent setting a notch- in the hopes to get her off it in a week or so. Short term goals continue to be to get the extra fluid off of her & lower her pain meds.

Thanks for all your prayers- they really work miracles. I would also like you to keep a special friend of ours in your prayers. Megan Boever, wife & mother of four young children, has been batteling cancer for a couple of years. Please pray for strength and comfort for their whole family during this time. Love you all...
Nick, Kim & MM

 
November 3, 2005
November 03, 2005 at 06:59 PM CST

Yesterday Madison ended the day fluid positive for the first time in days. To help her out they supplemented her diaretic again this morning. Around 3pm this afternoon it kicked in & she is getting off some of that extra fluid today. She still has a lot to get off. The doctors started her on her new formula feeds yesterday at 3cc an hour. The formula is portagen, an non-fat formula. She will be on this formula for 6-8 weeks most likely. Good thing she gets it through her NG tube b/c it smells pretty nasty. The doctors again lowered her Fentanyl & Versed. They said this is one of the hardest part for the babies. It is tough coming off those drugs. When she opens her eyes she looks like she is uncomfortable and drunk. She is now aware the tube in her mouth and down her throat- I'm sure that is part of the problem. We try to sit there and comfort her but there is not much else we can do. It will be great when we can hold her again.

 
November 4, 2005
November 04, 2005 at 01:02 PM CST

Madison has had a long morning which always makes me feel like I have had a long morning too. She ended the past 24 hours fluid positive again, her goal was to be 200cc fluid negative. The doctors have started her on another diaretic to help a couple of things- one being the fluid she is retaining. She is also alcolotic & it will help her get rid of some of the extra CO2.

She spiked a temp this morning around 10am- they have taken cultures from many sites & are waiting to see what will come back. They have not started her on any antibiotics yet- they are waiting for the lab results. In the mean time she is on Tylenol.

They lost one of her access lines this morning(the one in her groin). So she had to be poked and poked to get another one in- it ended up in her thumb. That site will probably last a few days.

They keep lowering her Fentanyl and Versed- she is awake more often during the day. They also took her Dopamine down one step.

We are hoping for good news back from her cultures and her being fluid negative today. Thanks for your continued prayers, messages & support.
Love The Foells

 
November 6, 2005
November 06, 2005 at 02:53 PM CST

Friday night they started Madison on a general antibiotic b/c of the fever she had most of the day and although the cultures hadn't grown anything specific yet the stain spot showed bacteria. Dr. Mysor said to me Friday that it was his personal goal to get Madison fluid negative for the 24 hour period ending Saturday morning at 7am (he jokingly added "even if I have to come in and ring it out of her). Well, they were able to get her fluid negative Sat & Sun morning :-) As her swelling came down, she started to leak around her folley- so they took it out. One less thing to worry about an infection. She continued to have a fever on & off again Sat. They also started her on a second antibiotic. It is more specific to alot of the things they see the kids have here in the PICU. Nothing new from the cultures they took yet.
Saturday was pretty low key until the early morning hours of Sunday. The night nurses said they were giving her a bath and she started to get agitated. She hasn't been handling being messed with too well yet. She often desats & you can see her moving around struggling a little. While giving the bath- she desated and had a bronchial spasm. To help her get more comfortable they gave her bolus Fentanyl and Versed. They are also giving her a vapor mist treatment a few times daily to help relax the muscles around her airways & they started chest procusions to help open up her lungs (specifically the right one).
She hasn't had a tempature since Satuday afternoon. She is resting comfortably right now as I type this. Overall things seem to be moving in the right direction. Thanks for everything.
Love to you from the Foells

 
November 7, 2005
November 07, 2005 at 03:15 PM CST

Madison's stomach is a little distended so they ordered an ultrasound to see what is going on in there. Probably extra fluid, they aren't overly concerned. In the mean time they did stop feeds.
On Sunday her chest tube came out- on it own. After three plus weeks that is not unusual. They thought they were going to have to put another one back in on her right side but this mornings xray didn't show the fluid pockets they had been seeing. So for now they are waiting.
She is still on anitbiotics but no fevers lately. Dr. Duncan feels it will probably be 10-14 days until she gets off the ventalator. Slowly but surely we are getting there. As he said, "It takes alot longer to get better than it does to get sick".
We will update more later.
The Foells

 
November 8, 2005
November 08, 2005 at 11:11 AM CST

Yesterdays ultrasound didn't show any extraordinaryly large pockets of fluid. It did show her liver is extremely large right now. We don't know why. They told us the swelling we see on the outside is a relfection of the swelling she has on the inside too. They are still trying to figure out what is going on with the liver but in the mean time are starting her feeds again.
She was fluid negative yesterday by about 120cc- right where the doctors wanted her. They are trying to get her off her dopamine today because they would like to get another of her lines out. They just have been in too long and the risk of infection is high. They continue to wean her Fentanyl and Versed & she seems to be tolerating it.
Thanks for checking in on us.
Nick, Kim & MM

 
November 10, 2005
November 10, 2005 at 10:38 AM CST

Today in rounds the doctors talked about trying to get some of Madison's lines out- like the art line in her arm & possibly the ventricular pacer lines in her chest. What, if any lines they take out will be decided later today. Other than that, not much is new. She is now getting 15cc an hours of her formula. They continue to lower her ventalator settings to get her to work her respatory muscles so she can do the breathing on her own. She is looking better & better each new day. Thanks for your continued prayers. Have a great day.
Nick, Kim & MM

 
November 14, 2005
November 14, 2005 at 02:22 PM CST

WOW, Kim and I were blessed to have such an amazing community that we live in! It was such a great feeling to see so many of you on Saturday night! Thank you all so much for coming out to Madison's benefit! We want to thank the commity that put it on for all of there hard work and time invested in our special evening! We also would like to thank Ag Partners for there donations and for the Ag Partners family who helped, donated, and supported us through our trying times. It is such a humbeling feeling to see the support we are getting. This would be a lot harder to get through with out the support of you all! Thank you all so so much it is hard to put into words what Kim and I and our families feel so thanks again for all of your support!

Madison's update today:
They have started to up her feeds again until her stomach hardens up, then they will cut it back again. She is still on a few drugs but we are way down on the rates! She is still being paced with the pacemaker but they are entertaining the thought of takeing it off. They also sent in some of her samples to check for infection again since her white blood cell rate is up today. The wound specialist came in today and checked out her foot and all of the lines that go into her and she thought that everthing was heeling just fine. She seems to be a little more alert when she is awake today! Kim was able to hold her last night for a short period of time. That is about it for now. I do have what I think is a funny story, while I was in Storm Lake this weekend the nurses and the lady that was watching Madison for us took a picture off of the wall of Madison and I and dressed it up a little. They made it look like I had a NE Cornhusker shirt on and Madison had a Cornhusker outfit on also. For all of you that know me I would where something like that unless it was free and the rest of my clothes were dirty. Oh well I thought it was funny! Have a great day and thank you all again for all of your support and donations!
Nick, Kim, Madison and family!

 
November 15, 2005
November 15, 2005 at 12:53 PM CST

Today they took Madison's pacemaker and shut it off. She is doing well with out it pacing her heart so far. They left the wires in for awhile just in case they need to use it again. They also up her feeds again today. They also had to up the Lasix today since she didn't pee that much yesterday, that could be because they have up her feeds two days in a row and they lowered her Lasix(Helps you get rid of extra fluids) yesterday! They are going to try to lower the Ventilator sometime this afternoon again also! Madison is moving enough now that sometimes they have to put socks on her hands to keep her from pulling on the vent tube going in her mouth and the feeding line going down her nose. She wants them out so badly sometimes I think she just starts crying but it is like watching T.V. with the mute on, when she is crying there is no sound just the expressions with some tears. That is kinda hard to deal with since you can't pick her up, all you can do is hold her hand and talk to her and say don't be a wimp like your uncles Jeff and Jon! That is all for today, hope you all will drive safe with the first snow! Take care Nick, Kim and Madison!

 
November 16, 2005
November 16, 2005 at 12:27 PM CST

Today after rounds I thought the DR's ended up about right were they started so from what I gathered is that we aren't making any changes today. They will leave the vent, feeds, and meds all the same but will try to figure out why her stomach keeps getting larger by doing another ultrasound as I am typing now! She has been fluid positive for the past two days which I can see that in her legs and face easily. If she can't get this fluid off they might try to put a drain in her stomach to help. She is also runing a fever today that started early evening yesterday. The great news of the day is that they pulled the pacemaker wires out of her stomach today which is about 3 less holes in her stomach to have infection and for Madison to pull on! That is it for today drive safe on the icey roads!
Nick, Kim, and Madison!

 
November 17, 2005
November 17, 2005 at 06:18 PM CST

Today the doctors did another ultrasound to look at some veins around her liver & kidneys. The results are that things are fine. They finally agreed to go in and get some of the fluid off her tummy. They couldn't decided whether to just tap it or to put in a peritoneal drain. They decided a to go with a peritoneal drain. So far we have gotten just over 140cc out & that doesn't count the amount that came out on the bed when they put the drain in (probably 50 or more cc's). They sent some of the fluid off to the lab but it looks normal and not infected so far.

She is also fluid negative in the amount she is peeing off today so far around 100cc. They gave her a diuretic (Zeroxalyn) yesterday & today that works with the lasix she has been on since a after surgery. She is still running fevers around 102. They keep sending things to be cultured- nothing has come back. She may have a virus- she had runny stools yesterday so they thought maybe roto virus or maybe something like a flu like virus. Anyway- we have to figure that out to keep making steps forward. We can tell she is uncomfortable lately- especially when she is awake. She has been sleeping alot more- probably b/c of the virus.
Stay warm-
The Foells

 
November 18, 2005
November 18, 2005 at 11:43 AM CST

Madison sure keeps everyone on their toes. Last night around 3am she went into yet another SVT. Her heartrate spiked to 220 but the good news is her pressures and saturations remained stable throught it & she was able to self correct on her own. The episode lasted about 5-6 minutes. So today the doctors were trying to figure out why- they have a few ideas but no answers. Dr. Danford said with her marginal condition he doesn't want her to have another and comprimise the progress she has been making. They decided to increase her amiodorone in the hopes to keep her out of SVT.

They have collected almost 200cc from her drain in her belly- so probably over 250cc has come out all together now. That is 8-9 ounces of fluid off of her. She looks more comfortable and hopefully has less pressure pushing up on her lungs. They still don't have an answer to what exactly the fluid is or why it collected there but are still looking into it. When they weighed her last night she is down from 5.2 kilos to 4.67kilos last night.

We are weaning the vent today & if all goes well they will extabate her early next week. She is still having fevers- but no explanation yet on why. Still a lot going on here with Madison but even with the SVT last night I still feel we are making progress as long as she doesn't continue that naughty stuff she tried last night. Have a good weekend. Lots of love-
Nick, Kim & Madison

 
November 21, 2005
November 21, 2005 at 09:50 PM CST

Aunt Tammy's Update....
Sorry it has been awhile, but Madison has been keeping us all quite busy around here. Here is the latest...This weekend Madison was starting to get higher fevers, so we have been trying to understand where they are all coming from, but we are still at a loss. They have told us it maybe a virus, so they have collected some cultures and will get back to us in a few days, so far the prelim results have not showed anything to be concerned with. They also mentioned the possiblity that it could be from dehydration or withdrawal from all the drugs that she had been on for sometime. Which is what we sort of think that it is also, because she was on such a great amount of them for quite sometime. Over the weekend her tempature was ranging anywhere from 102-104. But so far today they have started her back on a small amount of milrinone to help with the cardiac function and circulation and they also stopped her lasix to help with the dehydration. They are also giving her more morphine and tylenol to help try to control the increases with her fevers and keep her more comfortable. I think so far all of the changes seemed to have helped keep her more relaxed and comfortable while she is awake.
She also had an echo done again on her heart to see just what is exactly going on with her cardiac function and to see if this also could be a possible reason for the higher temperatures. The echo showed that the cardiac function has not really improved, there is still moderate to severe leaking occuring with the tricuspid valve. So hopefullly we can get her through these episodes with her fevers and back to a more resonable range say 98.6 :), and then take a closer look at the echo again.
On a brighter note they are still trying to move forward to the goal of getting her extabated this coming week. We are hoping for Thanksgiving Day...I know we have so much to be thankful for already, but we would really love to see her pretty little face again and see her breathing on her own come Turkey day. They are still sprinting her on her ventilater and she is showing them that she can breath over the vent for the most part. We just need it to start being all the time!!!
Thanks for keeping us in your thoughts and prayers...another thing we will be greatful for this coming Thanksgiving is that we have such a great base of family and friends. Keep the prayers coming...Love and miss you ALL
The Foell Family

 
November 22, 2005
November 22, 2005 at 08:56 PM CST

Madison broke her fever early this morning & it hasn't come back. So we made plenty of changes yesterday that we don't know exactly which one of the changes broke the fever. They decided to continue the morphine for another 24 hours as they increase her methadone (which makes her comfortable).

She also stopped having running stools early this morning. Just to make sure she didn't have the same thing happen all day today- they have stopped her feeds. It will also help get some of her key indicators back in balance.

She has been very comfortable today and slept most of the day. We're hoping that she is getting all rested up to enjoy Thanksgiving with us all day! We will continue to keep you all posted...wish you all safe travel for your holiday plans and thanks for all your continued prayers. We know that they are helping her!
Love always,
Kim, Nick, and Mighty Miracle Madison

 
November 24, 2005
November 24, 2005 at 08:01 PM CST

HAPPY THANKSGIVING!!!! I hope everyone has had time to give thanks for the many blessings in our lives. I know Nick & I took time to do the same today! Madison has been our blessing this past year to help teach us many new lessons in life.

Each new day seems to bring new issues to deal with regarding Madison. A few days ago we are trying to get rid of a fever and now we can't keep her warm enough. A few days ago we stopped feeds b/c of diareha, now it is still stopped but b/c she isn't tolerating feeds like she should. They have consulted a GI doctor- to try to figure out the feeds & her high trigliserides. Yesterday evening she also started having more leaking out of her old chest tube site. General surgery & GI have both been consulted for that too. So each new day seems to bring new challenges but we hold on to the faith that things will come together as they are supposed to. She has some big tests tomorrow- as always thank you for your prayers. We will keep you updated. All our love--
Nick, Kim & MM

 
November 24, 2005
November 24, 2005 at 08:26 PM CST

Just another quick note- I never remember until after I click Post but I wanted to say "Thanks" to everyone for the wonderful benefit for Madison. All the support has been overwhelming. We appreciate everyone who helped plan, work, donate & those who were able to attend. Words can't express how blessed we feel. We love you all so much. Again Happy Thanksgiving.
The Foells

 
November 26, 2005
November 26, 2005 at 01:08 PM CST

We are still waiting for some results from tests, cultures and other studies that they are doing on Madison. Overall, the past couple of days have been pretty good for her. The biggest thing we need right now is to be able to feed her and for her to tolerate the feedings. She needs that to heal and to grow. Our biggest concern is still the risk of infection- it can come in many forms and several places. Her foot is still healing, she has two lines in her still (the broviac and the PD drain), she is still on the vent & she is getting her nutrition by TPN which is high in sugar and bacteria loves that. The doctors have made us well aware that if she gets an infection- it would be very bad for her. We also need her to start tolerating feeds.
A new day and new challenges for little Madison. Instead of having racing heart rates lately- she has been having Bradycardia. Where the exact oposite occurs- her heart rate goes too low. They usually bag her- give her oxygen & that brings her back up. Why these now??? It can be a multitude of reasons.
She hasn't had any leaking from the old chest tube site for a couple of days so we hope to get her back on a very small amount of feeds in the next couple of days and then work our way up again.
Enjoy this great weather this weekend.
Love The Foells

 
December 1, 2005
December 01, 2005 at 05:55 PM CST

Hello everyone! I know it has been awhile since I last updated the page so I will do my best to summarize what has been going on.

On Thanksgiving they did an ultrasound of her brain- & thought they saw something to concern them and wanted a better look. The next day they did an MRI on her brain and it showed some small localized areas of tissue damage. This can be from many things-- episodes of SVT when her blood pressure dropped, times when her saturations dropped and of course the leaking valve is always a problem. We feel confident that these areas are small and localized at this time. We will run another MRI in a month to compare. Babies are resilient so it could get better with time or at the least not get any worse. They have had neurology in to assess her, but it is hard to assess a 4 month old baby who is on plenty of drugs and has spent most of her life in the hospital. She is doing the little things that are important like moving her fingers, toes, arms & legs. When she wakes up she focuses on us and sometimes will follow. We have seen her smile when she feels ok- even w/ all the tubes in her and the drugs she is on.

Over the weekend they slowly are starting to try to feed her through the NG tube again (back on Portagen). She is doing okay with that. She did emesis (throw up) a few times last night and this morning. She is starting to retain more fluid- as they are putting more into her and at the same time trying to cut back on her lasix (a diuretic that helps her pee). They want to get her off her lasix if possible. She has been on such a high dose for a long time. All the drugs have some negative side effects- High levels of lasix over a period of time will cause hearing damage.

Yesterday MM had a big day. She had an echo of her heart. They shut off the Milrinone & want to see how her heart is handling that. It looked about like the others. Neurology came by and assessed her again based of an EEG they did which studies her brain waves and responses to stimulation. She had a CT of her stomach. We are looking for many things that could cause her trouble tolerating her feeds or be a possible problem or infection. She also had a hearing test & passed.

Earlier this week the doctors ask for Nick & I to come in and sit down with them as a group. Although we stay in touch w/ all of them- it isn't often that we have had all of them together in one room to discuss Madison. They called the meeting to make sure everyone is on the same page & to let us know all of our options. We had Dr. Duncan (from CT surgery), Dr. Renolds (head Intensivist), Dr. Flecter (from Cardiology), Megan (CT surgery), Amy & Meghan (the charge nurse and her nurse for that day), Daoka (one of Madisons nurse practitioners) and Nick & I there. We talked extensively about Madison and where we want to get and the possibility of getting there. They had to come to a common term before getting in the room with us about her chances to complete everything & the term they could all agree on was "longshot". The long term goal would be to fix the leaking valve and do a venous connection directly to her lungs. To do all that- many things have to fall in place first. To try to not make a long story too long- it all starts with her nutrition. They have to get her to tolerate her feeds so she can grow, heal and get stronger for the next steps. Which sounds so much easier than it is for Madison. If we can get her to tolerate feeds, grow & get stronger she will have another heart cath probably in mid-December. From that information we will decide what can be done.

“With Trials we grow stronger in faith. With Faith we move closer to God. With God we can do all things. When we trust in God, his plan for our lives is unfolding each day”
We call her Miracle Madison because we have that faith.

All our love..
Nick, Kim & MM

 
December 4, 2005
December 04, 2005 at 06:25 PM CST

A fairly quiet weekend & Madison did get to send some quality time with her grandparents too. Friday they took out the PD drain in her tummy bc it was plugged. They did put another one back in bc they feel she still needs it. They had to slow her feeds down again bc 20cc an hour was just too much for her little tummy to handle. She is now getting 16cc an hour & doing well. Calories are pretty good- she is able to tolerate her lipids (fats) and is getting a fortified version of portagen. I am going to check again in rounds tomorrow to see when they think she can get back on breast milk too. I am not sure what the plan for her is this week but hope to have a better idea after rounds tomorrow.
Thanks for all the nice new messages.
Love-
The Foells

 
December 5, 2005
December 05, 2005 at 12:17 PM CST

So far today we have increased her portagen feeds from 16cc to 18cc an hour. We are hoping she will tolerate the change. The new PD drain has been having troubles, clogging and leaking around the sight. They will probably take this one out this afternoon & are thinking of not putting one back in right away. They want to see what will happen. Fairly quiet day today- just how we like it.
Love to you all-
Nick, Kim & MM

 
December 6, 2005
December 06, 2005 at 08:35 PM CST

Late last night we decided the old PD drain would come out and they would put in a new longer lasting PD drain. So this morning Dr. Hamill surgically placed the new drain. They gave her plenty of meds so she would be comfortable and not move during the procedure. Due to the drugs she has been comfortably sleeping most of the day. They made a change in her formula- to see if the kilus leak & trigliserides level can remain stable on a formula with more fat in it. They put her back at 18cc an hour too.

This morning before the procedure she made my day. She was in such a good mood. She was all smiles and looked very comfortable. It was hard to let them do the procedure after seeing that bc I knew she would be out of it the rest of the day & probably uncomfortable w/ her new tube in when she wakes. But we believe she needs it and are trying to stay ahead of the problem instead of playing catch up.

Stay warm
Nick, Kim & MM

 
December 7, 2005
December 07, 2005 at 11:20 AM CST

The trigliserides were a little higher in the PD drain output so it is back to Portagen formula. Thats ok, we will wait for things to heal and correct. She seems to be very tender around her tummy around the new line. That is to be expected. They are sending more labs and cultures to check things out- but nothing major. Hopefully we will all just stay warm and have a nice quiet day.
Nick, Kim & MM

 
December 10, 2005
December 10, 2005 at 02:39 PM CST

A few changes over the past few days. After testing one of her stools on Wednesday- they were concerned about infection because they found traces of blood in it. They immediately stopped her feeds and it was back to TPN for Madison. They again ran a series of cultures and other tests- & nothing grew from them. They did an upper GI study and bowel study on Friday- everything looked fine. Today they started her back on Portagen at 5cc an hour. It will be a slow climb up again to try to get her enough nutrition and not upset her tummy. Other than that she has been awake more and seems happy and content. We were worried these couple events of late would mess up the heart cath she has scheduled for the 15th, but so far everything is still on schedule.
love-
The Foells

 
December 11, 2005
December 11, 2005 at 07:33 PM CST

They have started and stopped & again started and stopped feeds over the weekend. Right now she is just on lipids and TPN. This morning she was looking a little uncomfortable- but throughout the day has calmed down. She is resting nicely now. They made some small changes with some of her meds- lowered her captapril & even considered starting her back on milrinone (but have not yet & we hope they do not have to). I was able to hold her for about 10 minutes this evening which was really nice.
Have a great Monday-
Nick, Kim & MM

 
December 12, 2005
December 12, 2005 at 05:55 PM CST

Madison has had a low grade fever all day- ranging from 100.9 to 99. So again they are running cultures on about everything. We are keeping our fingers crossed that this won't delay the big day this Thursday. She has been a cutie today- sharing smiles w/ everyone. She is wearing her cute pink socks w/ ruffles- what a doll. Thanks for keeping us in your prayers.
Nick, Kim & MM

 
December 13, 2005
December 13, 2005 at 05:41 PM CST

Madison's fever remained low grade today until mid-morning when it reached 101.7. They started her on a group of antibiotics. Later today something had finally grown from her ET tube(venalator). So they stopped the group of anitbiotics and put her on a specific one to what grew. I am not sure what that means for her test on Thursday. Otherwise she has had a quiet day. We will keep you posted. Love-
The Foells

 
December 14, 2005
December 14, 2005 at 06:19 PM CST

Madison has been a good girl today, getting ready for her big heart cath tomorrow. We were able to snuggle late this afternoon for awhile. It was so nice. We will have a lot to decide after we get the info back. We are praying for good low numbers back from her pulmanery pressures. They will also check other things (as much as Madison will let them). They are coming to get her around 7:30 tomorrow morning w/ the hopes to start the cath shortly after 8am. Please pray for good low numbers. Thanks.

Love
Nick, Kim & MM

 
December 15, 2005
December 15, 2005 at 07:10 PM CST

Madison handled the cath like a champ. She did have some SVT's- expected by all of us, but she came out of them fine w/ medicine. She looked great when they brought her back to the room. She was awake and like nothing had happened. They put an art line in the groin and this time entered the heart through an artery in her neck. Right after the cath- we talked to Dr. Flecter, the cariologist who preformed the cath. He proclaims himself one of the more optimistic of his group but unfortunately the numbers just didn't look good to him or anyone else in his group. He gave us his perspective & are still waiting to Dr. Duncan tonight. He had 2 cases today and has been in his second one since about 11am. We know he will be by tonight to talk- we think around 9pm. So we are waiting. I guess Nick & I are thinking of this as the data collecting stage right now. We are trying to get all our options, weigh the pros & cons to everyone involved before we make anymore decisions. We will know more later tonight & I will try to update later or in the morning. Thanks for all the prayers and support. BTW- we love you all too:-)
Nick, Kim & MM

 
December 16, 2005
December 16, 2005 at 12:26 PM CST

Dr. Duncan was in surgery until 11pm last night therefore we didn't get to visit with him last night about Madison. He is again in surgery today- but hopes to be able to talk with Nick & I late this afternoon. So we don't have any updates now but will try to update later after we know more. Just when I thought I was having a long day yesterday waiting to get more information from Dr. Duncan- I again realize others out there are having longer days. I can't imagine how that family felt knowing there son was in surgery for almost 12 hours, most of the time things we not going well. But thankfully in the end- things turned out fine we heard.

The nurses dressed Madison today. She looks so darn cute. She is wearing a one piece pink sleeper w/ an "M" on the chest. We will update you all later.
Nick, Kim & MM

 
December 17, 2005
December 17, 2005 at 10:45 AM CST

We finally had a chance to visit w/ Dr. Duncan last night. Unfortunately the discussion went the way we thought it would. We reviewed options but none of them are all that great. We have some tuff decisions to make for Madison and our family. The doctors will talk again in cath conference on Monday and we will talk to them more after that meeting.

 
December 18, 2005
December 18, 2005 at 12:19 PM CST

Madison provided some excitement to our day yesterday. We had decided to take a little vacation from the hospital- so we drove to Fremont where my parents live. Right as we were walking out of the room we told our nurse that Madison is going to extubate herself (pull out her ventalator) today. She had been working on it all day & had gotten close several times right in front of our eyes. About 6:15 last night we got a call from Dr. Demar saying we are right. He suggested we get back to the hospital so we could hold her. It was great. We got plenty of snuggle time & took plenty of pics too. They weren't sure how long she would make it without the vent- but she was a champ (again) & lasted until 11pm. They re-intabated her and today she is wearing a pretty pink sock on her hand :-)
Enjoy your day-
Nick, Kim & MM

 
December 21, 2005
December 21, 2005 at 11:01 AM CST

The past few days haven't been the easiest. Nick & I have been struggling to decide what is the best option for Madison. We have had many conversations with the doctors and nurses, Madison's care team, friends and family. Always keeping in mind that we want the best for Madison. We have started using the phrase "We want to do things FOR Madison not TO Madison". We don't want to be doing things just to do them w/ no hope for anything better to come from it. We had come up w/ 2 options- the first being what our team of doctors feels to be her best shot surgically and the other as hard as it has been to accept and comprehend is just compassionate care for her. We have changed our minds several times over again but feel we won't be able to get out of bed and look into the mirror and say "We gave it our best shot" if we don't try this surgery. Surgery as always comes w/ many risks. This time she won't be as healthy as she was going into her October surgery. She doesn't have the reserves she had back then. Any surgery to her will initially make her sicker before things can get better & that is difficult for Nick & I to see. She has fought so hard to get to where she is today. We know the risks of the SVT's- therefore before surgery she will undergo a heart cath to map and oblate (burn off) those extra pathways. I could go on and on sharing all the options we had to consider when going ahead or not going ahead with surgery but my fingers would fall off while typing. We just feel- looking into her eyes & when she smiles back at us she is saying I'm not done fighting Mom & Dad.

One thing that stuck out to Nick & I when we were walking around the hospital late Sunday evening discussing all of this is a quote by Willa Cather. It is on the wall in the lobby here at Childrens- "Where there is great LOVE, there will always be MIRACLES". She has shown such fortitude and has been an inspiration not only to our family but to yours as well. We feel the love from each of you w/ every message on the board, card, phone call and visit. We are still praying for our Christmas Miracle.

Nothing will happen until next week Wednesday & we will keep you updated.

All our love to you & yours this Christmas season-
Nick, Kim & MM

 
December 27, 2005
December 27, 2005 at 08:22 PM CST

Just a quick note to let you know what will be going on tomorrow. Life Net will be picking Madison up at 6:30am. After several changes today- they have finally decided to take her there by ambulence (not by air unless they change it on us again :-] ). She will be taken the UNMC (University of Neb Med Center) for the procedure. It will take probably 5 hours from start to finish. They should get started just before 8am. We will be able to wait there outside the cath lab at UNMC. We will have Dr. Erikson and Dr. Koogler (cardiologists) from Childrens doing the procedure. Dr. Day, an intensivist here at Childrens, will also go along. They expect to see a few SVT's, especially early on before they abolate her WPW pathways. They will either burn them or freeze them- depending on where the incorrect pathways are located.

We hope to have Madison back here at Childrens by later in the afternoon tomorrow. We will update you after everything. Thanks for all the LOVE you are sending our way.

Nick, Kim & MM

 
December 28, 2005
December 28, 2005 at 04:55 PM CST

We are back home- to Childrens Hospital anyway. It was a long day- for everyone involved. It was also a good news, bad news day. She traveled very well. That was nice.

Initially they had trouble getting the lines in Madison today. That took much longer than expected and was complicated by the fact she has had several caths & one just weeks ago. The next bit of trouble came when they got the cathaders in her heart. It kept putting her into SVT & a new issue- atrial flutter. They had to start her on some beta blockers like esmolol to keep her out of SVT long enough to get some mapping done.

They were finally able to do some mapping- figured out where they thought one of her WPW circuts were at and tried to get rid of it. After several, several times- no success. They also believe she has more then one SVT pathway but it sends her into a much slower SVT- heartrate 160ish.

So in summary- good news is she is safely back at Childrens & they were able to locate the problem (we hope to have Dr. Duncan get rid of it during her next surgery). Madison is recovering well from the day- but she is still very out of it right now. We will be talking to Dr. Duncan sometime tomorrow about all of this and try to make sense of the next move we will make. We think surgery could be as early as next Tuesday but nothing is for sure yet.

Thanks for all the prayers, love and support. We will keep you updated. All our love--

Nick, Kim & MM

 
December 30, 2005
December 30, 2005 at 10:57 AM CST

We did talk to Dr. Duncan last night about the cath. He felt they gathered some really good information even though they were not able to ablate any of the pathways. They have it located and there is a good chance he can get it when he is in surgery. That would be a big plus for Madison- hopefully making this next post-op course easier for her.

It sounds like he would like to operate next week. Of course, everything depends on Madison but he thinks either Monday or Thursday. Monday- if she recovers back to her baseline before the cath procedure last Wed. She has also continued to flirt with fevers- anywhere between no fever to 102. We would like for her to have no fevers for about 48-72 hours before surgery. We will be watching her closely this weekend and will know more as time goes on.

Have a good weekend & we will keep you posted.

Nick, Kim & MM

 
January 3, 2005
  January 03, 2006 at 04:53 PM CST

Today, Madison pulled her ventalator out again for about 4hrs. before they had to put it back in around noon today. So she has been a little druged since but should come out of that soon. We had the doc's put the vent back in her nose rather than in the side of her mouth since she is trying to suck her thumb which could be part of the reason she is always pulling on the vent tube. We are still on for Thursday as far as we know for surgery. Kim will write more details later hope everone has recovered from the holidays! Take care Nick and Kim!

 
January 3, 2006
January 03, 2006 at 09:58 PM CST

Hello Everyone- Happy New Year!! Just thought I would thank everyone for your continued support. Nick & I have had butterflies this week knowing we are sending Madison back to the OR this Thursday. We know it is for her best but it is always hard to see her go from smiling and happy to just laying there fighting to get better. Dr. Duncan stopped in today and will again later tomorrow to go over things one more time. The plan is to--1) repair or replace the valve. It will depend on the echo he looks at and what he sees when he gets in there. They will have everything they need to replace it. It will be the smallest valve they make and it still might be too big. It is a mechanical valve- she will need to be on a new med to keer it from clotting and such. 2) They will do their best using the map from the heart cath last week to get rid of her SVT pathway. She did have an SVT Friday night last weekend. Since then- she has been a good girl. They put a bag of ice on her face and she came out of it. 3) They will have to either re-band or put in shunts to control the blood going to her lungs.

We will keep you posted. The plan is to get MM in the morning on Thursday- probably 9am. It will be a long day- probably taking 5 or more hours.

Nick told you about our excitement this morning. It was great to get to cuddle with her before Thursday. She is still getting used to it in her nose but I hope it will be a little more comfortable for her. We think she may be starting to get a tooth or two. She loves to bite on things and suck her thumb- it is so cute. Keeping our fingers crossed she hasn't been having fevers and all her cultures are negative to date.

Lots of love-
Nick, Kim & MM

 
January 4, 2006
January 04, 2006 at 09:12 PM CST

We talked to Duncan tonight and everything is set for tomorrow. There will be two cases tomorrow and Madison will be the second one. They will be coming to get her around noon, and expect it to be a long surgery. The antisthesioligist has concerns about getting her on and off the Bypass machine, but we all know Madison and she's tuff stuff. Right now Kim is holding Madison so I'm (Her favorite Aunt Vicki) writing it with instruction from her. Madison was awake and happy today and sharing plenty of smiles. Thanks for all the extra prayers for tomorrow, she'll be using every one of them. We'll be sure to keep you updated throughout the day and definetly after surgery.

 
January 5, 2006
January 05, 2006 at 01:46 PM CST

Just thought I would let everyone know they just took Madison down about 15 mins ago. They will get her under general anesthesia, Dr. Duncan will then come talk to us one last time before they get started.

She was all smiles this morning- right up to the minute they came to get her. Nick & I both got about 45 mins each of cuddle time with her too!

We will check in later...
Love
Nick & Kim

 
January 5, 2006
January 05, 2006 at 05:40 PM CST

Meghan just came out to update us on Madison. They just got her on bypass around 5pm. It took longer than we thought but they were successful getting her on. Dr. Duncan is now repairing- probably working on the SVT pathways. Thanks for the prayers- we feel them working. Meghan thought if things go smooth from here on out- it will be about 10pm when they get done. I will keep you posted.

 
January 5, 2006
January 05, 2006 at 07:31 PM CST

Just another update-
The ablation is complete and the valve is in. Things are moving faster than they thought which is a great testament to all the prayers. They are now re-banding the pulmanary artery.

The next test will be getting her off of the bypass machine & have Madison doing the work again- which will be the toughest part of the whole day.

Another update later

 
January 5, 2006
January 05, 2006 at 09:03 PM CST

WOW- Madison is off the pump (off bypass). They said it went smooth- the part they thought could cause her the most trouble. They are still doing things- putting in a new broviac line, pacer wires and such. Her heart is being paced right now but is doing the work on its own. They don't think they will be able to close her chest tonight. Her heart is working hard and is very large right now. This isn't totally uncommon- they hope to close it in 2-5 days, could be longer or could be sooner. They are estimating getting her upstairs to the PICU around 10pm. They know it will still be a long night for her. This will probably be my last update until tomorrow. We can't thank everyone enough for ALL THE PRAYERS said for our family today. She is a miracle- God does answer prayers.
We will talk to you more in the morning. All our love to you-
Nick & Kim

 
January 6, 2006
January 06, 2006 at 12:42 PM CST

"The Lord is good, a stronghold in the day of trouble. And he knoweth them that trust in him" This is a verse that is on Madison's name card- a gift we received from a friend when she was born. It is always taped close to her bed & I read it to her everyday. It has proved true & did once again for us yesterday.

Madison had a good night and a fairly quiet morning. The only trouble last night- her chest tube wasn't draining as much. They inserted another needle into the pocket of blood that was collecting to pull it off. It is very different for us to see her awake (although very very out of it bc she is on high does of Fentenayl and Versed to keep her comfortable). She wiggles around a little bit & we think she has tried to bring her hand up to her mouth to suck on it.

She had one episode this morning where her blood pressure dropped. All the doctors including Duncan were in the room at that time. They increased her dopamine & she has been fine since.

Her chest is open- the incision is about 5-6 inches long and about 2-3 inches wide in the center. It is an oval shaped opening. It is covered to keep bacteria out but you can see throught it. We see her heart beating, the pacer wires put on the heart, a little bit of her lungs and the blood collecting there around it all. It is weird to see that all and have her moving around a little bit too.

In rounds this morning they were happy with her night- but they always call the first 12-24 hours after surgery the honeymoon period. They expect they might have some troubles as the day goes on but are ready to deal with them as they arise. She really looks good this morning considering everything.

To the best of their efforts yesterday to get rid of the SVT pathways- it appears they did not get it. They did several several frezes and burns around the area of trouble, inside and outside of her heart. You can still see a large delta wave on her EKG which is an indicator of the pathway still being present. BUT on the bright side- no SVT troubles thus far.

I will update you later to let you know how the day goes. All our love-
Nick, Kim & MM

 
January 6, 2006
January 06, 2006 at 10:33 PM CST

Madison has had a good day. The valve is working great. No SVT troubles (knock on wood). They have made a few changes in some of her drugs but nothing major. They started her on a heprin drip (to help the blood not to clot on & around her valve). She will always have to be on some form of this.

Nick & I are a little sleep deprived but will hopefully get some better rest tonight.

More Later-
Nick, Kim & MM

 
January 9, 2006
January 09, 2006 at 07:38 PM CST

Madison has been doing well. She sleeps alot as she should. When she occasionally wakes- she is groggy. They were able to shut off her dopamine- which was supporting her blood pressure. They have started her back on lasix- a dieretic to help get some of the extra fluid off of her. They think they need to get about 500cc of fluid off before closing her chest. We are hoping to get that done by the end of this week or early next week. They talked about the process- & it is stressful to Madison and her heart when they do go and close her up. The added pressue will cause a set back to her- & she will again get a little sicker before getting better. About 10% of the time they will go and close the chest & have to re-open them b/c it is too hard on their body and they just are not ready yet. In that case- they would just wait longer and try again.

She is on TPN & Lipids again for nurishment. They won't try to start feeds again until after closing the chest. After she gets her calories up on feeds the can try to wean her from the ventalator again. This is all getting weeks out but just thought I would share where we are trying to go with things. Like always- this is the plan now, it could change. Oh - & the final part to that plan is to get us all HOME.

So far today she is fluid negative by about 100cc or more. So she is doing the right things. Thanks for taking the time to check in on us. We will update more later.

Nick, Kim & MM

 
January 10, 2006
January 10, 2006 at 11:37 PM CST

For the most part it has been a quiet day. They again increased her dieretics- in hopes to get more fluid off. So far it is working. Yesterday she ended about 70cc negative and again tonight she is around 100cc negative. They keep talking about closing her chest- but no exactly sure when they will do it. It could be as soon as tomorrow or as late as sometime next week. Just depends how her days keep going.

Our little excitement came this evening when Madison got mad about being re-positioned. She desated down into the teens very fast and got very blue. She was awake when this happened and as her saturations kept plumeting (heart babies don't have much of a reserve so they go down fast) her eyes rolled back into her head. Needless to say making me VERY nervous as a few people entered her room to get her back to where she needed to be and then sucktion her ET Tube out. That is our MM- keeping us on our toes. We will keep you updated as things continue to progress on...hopefully in the right direction.
All our love-
Nick, Kim & MM

 
January 11, 2006
January 11, 2006 at 04:17 PM CST

So far so good today. She has had a few more big desats upon repositioning. They are now giving her some versed to comfort her upon the move which we hope will help. She was almost 300cc fluid negative this morning at shift change- YEAH! Way to go Madison. Dr. Duncan and Dr. Hamill were both in this morning and thought she was looking good. She could be getting close to getting her chest closed. We are shoting for this Friday. We still want to get more fluid off, let her heart return to a smaller size and get her nutrition up.
I put new pics on the carepage today. Just a heads up- I did put one there with her open chest. I re-sized it so it isn't very clear as far as what you can see but you will get the idea of what we see here. You can also see the art line in her left arm and the other venous line in her left arm. The art line monitors blood pressure & allows for them to draw back blood for her labs. The other venous line is for meds. The line coming out of her left shoulder is her broviac- also for meds, TPN and lipids. It goes right into her heart. She has two sets of temp pacer wires coming out of her mid trunk area on the left and right of the trunk. She has a chest tube drain on her right side by the pacer wire. Her PD drain is on her left side by that pacer wire. Between the pacers- there is a dark spot in the picture. It is her old broviac site healing- it has a couple of stiches in it now and is healing good. The light red around the open chest is just the cover over the chest- her skin isn't actually red there. She opens her eyes, moves and loves to squeeze our fingers. Even with everything she has been through- she still smiles at us. It makes your day seeing it. She is one unbelievable girl. More later-

Love ya-
Nick, Kim & MM

 
January 12, 2006
January 12, 2006 at 02:04 PM CST

Overnight Madison spiked a fever- 102. So as you can image from me saying before they are fearing an infection. They have taken cultures from everything and everywhere- nothing has grown yet. Her fever is down a little. With all this going on- her blood pressure dropped and her urine output dropped off significantly. She ended up fluid positive this morning. Dr. Duncan wants to close her today b/c the possibility of infection. They don't know if she ready so it is still up in the air. They are hoping to close her at 3 if Dr. Duncan is back (he is in surgery at the University today). She is back on dopamine to keep her blood pressure up, she is on many different antibiotics until they pinpoint the exact problem. The reason to close her today- they don't want an infection inside her chest or around her pacer wires.

I will update you later when we know more. Thanks for keeping Madison in your prayers.

Nick & Kim

 
January 12, 2006
January 12, 2006 at 03:41 PM CST

They just took Madison down to the OR. They are not sure they will get her closed. Right before they took her down- Lab called & said her venous line is infected. Not good. We don't know too much else bc everything happened really fast. They are going to go in and at least clean things up around her heart where she is open and if possible they will close her too.
We will write more later.

 
January 12, 2006
January 12, 2006 at 06:58 PM CST

Madison is back in her room with her chest closed and so far so good. She is on a little more support from the vent and dopamine. We are hoping for a quiet night. We will update more tomorrow.

 
January 14, 2006
January 14, 2006 at 04:05 PM CST

Madison handled her chest being closed like a champ. She had very little trouble that night or the following day. She did get a little puffy but was significantly fluid negative yesterday. So all is well with that now.

The unfortunate news we got was about her infection. They have identified it in her blood stream and it is enterococcus. The short story of it is... enterococcus is not a harsh infection but it is very hard to get rid of it. The problem with it is it will stick onto anything in her blood stream that is foreign- such as her 3 central lines she needs for meds and such and also her new valve. They are trying to steralize her blood with antibiotics, then they will need to get the lines out and new ones in & hope the infection doesn't vegitate on her valve. Once the blood is steralized for 72 hours- they will begin to replace her lines and then she will be on 8 weeks of additional antibiotics. Needless to say- we were all very disappointed to get this news. Things were finally starting to look like we were heading in the right direction- her valve was in, blood was going forward and we felt like we could begin to make progress in other areas. We are praying hard the infection does not vegitate in her valve- the short of it is it would just be bad. Madison has been running low grade fevers with spikes occasionally to 102. Her profusion has worsened b/c of it too. Blood pressure remains good w/ some support of dopamine. They did start her on 2cc an hour of breast milk today and are watching her pd drain for any additional draining and kilus fluid.
Please continue to keep Madison in your prayers- asking for her comfort as she continues to fight and for God to rid her of the infection. Thanks-
Love The Foells

 
January 14, 2006
January 14, 2006 at 05:06 PM CST

Just as I finished typing the last update Dr. Hammel came in to talk about MM. They are going to take her down to the OR tonight to take out her infected lines. They just can't have those in her..they are afraid we won't be able to steralize her blood. Hopefully over the next few days we will be able to steralize her blood then we will have to take these lines out that we put in right now & once again put lines in with the hopes that the infection will be supressed or gone for good. Dr. Hammel is calling in his team right now. We will probably go down in an hour. The whole thing will probably take 3 hours. I will update more later.

 
January 14, 2006
January 14, 2006 at 10:48 PM CST

Madison is on her way back up right now. Everything went fine. They put in a new line w/ 3 ports.

 
January 17, 2006
January 17, 2006 at 11:26 AM CST

Madison has been doing her best to fight of the infection. She has had fevers ranging from very low grade to 103 at times. The fevers have caused her profusion to be poor- but at times it gets better. She has had A LOT of drainage from her chest tube since coming back from the OR Sat night. She had over 1000cc out of it in the past 24 hours and 1200cc out the prior 24hours. They have had to keep replacing her fluid loss to keep her blood pressure where they want it. I think this morning it looks to be slowing down- we hope. Most of her other symptoms (other then the large amount out of her chest tube) are just from fighting the infection. She has had a couple days of negative cultures from her new lines. We hope that means they have steralized her blood from the infection. Thanks for the prayers- we will keep you updated.

 
January 22, 2006
January 22, 2006 at 10:17 AM CST

Nick & I took a much needed break from the hospital earlier this week. Madison was able to spend some quality time w/ her Grandma's & Aunt Tammy.

This week has had its share of ups & downs & ups again and back down again. The infection, drugs and continued high drainage out of her chest tube have been causing Madison to have poorer kidney output, episodes of low blood pressure, temps & poor profusion especially to her extrematies. Overall this past week she has been a pretty sick little girl. We have been talking to our doctors a lot about her outlook. We hope to see some improvement soon. Dr. Duncan put it like this- She can't stay where she is at for much longer. She will let us know if she is going to get better or get worse.

On the bright side- we did receive some new Game Day socks for Madison. For those of you who don't know the story- here it is. We have been keeping her toes warm with her pretty pink socks or pink bunny slippers. BUT on big days (Game Days)- caths, surgeries or when she needs to get a little more serious- the nurses told us she can't wear the pink socks. So on Game Days she has been wearing a pair of black and gold sock w/ a bird on them. Nick calls it a Hawkeye?? :-) BUT- we finally got the right color on her feet- RED & WHITE Husker socks!!! Thanks to Dale, Joan & their boys. I'm sure things are going to turn in the right direction now.
All our love-
Nick, Kim & MM

 
January 24, 2006
January 24, 2006 at 01:16 AM CST

Tonight Madison joined the angels in heaven at 11:10pm. She was a fighter until the end- always giving us her best. Her footprints are left on the hearts of many.

We will update tomorrow with her funeral information.

Thank you for all your love & support through this journey.

Nick & Kim

 
Madison and Her Angel

Mary & baby Angels

 
January 24, 2006
January 24, 2006 at 05:54 PM CST

Thanks for all the continued support, messages and love. Nick & I are doing pretty good. I don't know if it has hit us yet that she is gone but we are at peace with Madison being in Heaven w/ Jesus and Mary. She is no longer in pain, she doesn't have any tubes or wires in her and we know she gave Jesus a big smile when she saw him. She is finally being held and rocked like a 6 month old baby should be held.

Visitation will be Wednesday from 6-8pm w/ a vigil at 7:30

Funeral will be 10:30am Thursday at St. Mary's Church in Storm Lake
Address for those out of towners-
312 Seneca Street

We can't tell you enough- thank you, thank you & thank you-- We Love You so Much.

Nick & Kim

 
January 24, 2006
January 24, 2006 at 08:35 PM CST

Just to clarify

The visitation is at the Funeral Home

Fratzke & Jensen
300 Cayuga St

 
Wednesday January 25, 2006
Visitation will be Wednesday
from 6:00 PM - 8:00 PM
with a vigil at 7:30 PM
 

 
January 26, 2006
Madison's Funeral 
10:30 AM
Thursday January 26th.
St. Mary's Church
312 Seneca Street
in Storm Lake Iowa
 
 
February 1, 2006
February 01, 2006 at 02:40 PM CST

I posted pictures of our last night together with Madison. Thanks so much to "Now I Lay Me Down To Sleep" for the great pictures from that beautiful evening. As sad as it was- It was also a beautiful night. Many of you probably heard the story but here is the short version...we called our families in, we took the pictures, Fr. Cook (who married Nick & I) came to give Madison a last blessing and we held her in our arms until the end.

Nick & I are okay. We have cried many tears, relived many memories, looked at pictures, watched videos of Madison, listened to music to help us heal & prayed. It is weird being home, but also good. As I look around my office- my calendar reads September 2005. The last time we were really home and the only time Madison was able to spend here with us. We miss her. I miss her eyes that always told me everything was going to be okay. I miss her beautiful smile that she shared with everyone. I miss holding her hand and her squeezing me back. I guess I miss it all. It is hard for me to be sad for her because I know she is in a much better place. So I know selfishly I am sad for me- missing her.

Nick & I have learned SO MUCH through this. We constantly get asked how did you do it? Well, you deal with what you are dealt. BUT we couldn't have done it without the support of our families, friends & communities. But most of all we couldn't have done any of this without GOD. Our faith kept us going every day. I don't think any of this happened by chance. When I think back over this journey to even the smallest of details, I know it was always HIS plan. He sent us an angel that touched more lives in 6 months than most of us will through the decades and decades we will live. Many people have told us the many lessons she has taught. Therefore, we know we were blessed by being chosen to be her parents and are so very proud of her. Now we have our own little saint in heaven to watch over us.

We are setting up a memorial in Madison's name to the Saint Mary's Catholic Church & School here in Storm Lake. Nick & I truly believe it was our faith that got us through. Therefore we want to help make sure everyone has the opportunity to grow their faith.

Nick & I also want to thank everyone who we saw last week Wed night and Thursday helping us celebrate MM's life. We know there were many that couldn't make it but were with us in spirit. Thank you for all the cards, letters, verses, poems, flowers and plants, and messages on the board.

These 2 poems summarize everything I said above..
God strolls among the heavens,
and together, down they look.
The little one looks mystified,
while the Lord writes in his book.
My child, have you chosen?
Which ones shall it be?
Give much consideration...
When you choose your family.
I looked around the whole wide world,
Till my eyes found your sweet face,
I knew you were my mommy,
I knew I'd found my place.
Jesus sat beside me then,
his eyes so kind and warm,
Are you ready now, my precious one,
To take on human form?
Challenges await you child,
a race that's yet to run,
but your life shall teach others,
when all is said and done.
At times you'll see your mommy weep,
You'll see her ask me, "Why"?
But children bring the heart a smile,
when the soul just longs to cry.
Now go my child, and teach them faith,
and should I bring you home...
remind your dad and mommy that...
"They'll never walk alone".

This one just speaks to MM's journey too..

Welcome Home

Each of us is given
Precious time to spend on earth,
But we know the journey leads us
To a home of greater worth.
Sometimes the Father takes us
Down a path not of our choice,
But when it leads to heaven,
How our hearts and souls rejoice!
And earthly cares all vanish
When at last we hear God say,
“Welcome home, My precious child,
I led you all the way.”


All our Love
Nick & Kim

 
God Bless Each Of You

 
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