Ally Heintz

There has been a lot of developments with Ally in the past couple of days, which is why we decided to wait until today to update. I'll try to start where we left off.

Today Ally had a PICC line placed which is a peripherally inserted central catheter. This was placed in her arm and is held in place by a dressin not a suture like a central line. It was placed with ultrasound guidance and they obtained access fairly easily. Now she will have her central line removed. Since the bacteria Ally had never grew from trache cultures they had to assume that the line was the source of the infection. She will now have this PICC line for approximately one week and than hopefully they will be able to place a new central line.

Of course all of this depends on her cultures for the next couple of days. They will draw a new culture from her PICC line. If this would grow the same bacteria than they would have to begin treatment with an antibiotic and hope that they find one that will kill the bacteria. Again, Ally has still not been acting sick, she has been just as happy as always.

Onto the heavy stuff! On Sunday we had a lengthy discussion with Dr. Casas, one of the transplant surgeons here at duPont. She informed us that she feels Ally is in a chronic state of sepsis (infection) and that it would be in her best interest to be taken to Children's Hospital of Pittsburgh for a consult on a small bowel transplant. This is the news that Shane and I have feared all along. The small bowel is the most difficult organ to transplant and they haven't been done long enough to even see long term survival rates.

Currently there are only three intestinal transplant centers in the United States and Pittsburgh's is the world leader. We are hoping Ally will go sometime in November for her consult. This is a week long stay with Ally as an inpatient and she has numerous tests performed. Shane and I will be meeting with tranplant coordinators, surgeons, social work, and psychologists. We are hoping maybe our parents can go to so that they are informed and can help us take Ashley.

I am adding a link for Children's Hospital and you can read more about the transplant and there facilities. The docs there were informed of the bacteria that Ally has and said that they would still consider her for transplant. We hope to have the date for her consult later this week. As for now Ally will remain here at duPont until they are able to place a new central line and until they have cleared the bacteria or at least have exhausted all attempts of clearing it.

Please pray for a miracle!

I just read Shane's most recent update from Saturday, and I felt I needed to comment further although at this point we don't have to many details. Everything with Ally has definitely taught me that Shane and I hear and deal with things very differently. Which is good because it keeps us balanced. When I have a down day he is up for me and when our troubles get bad and he is down I stay positive. This balance is part of the reason that we have made it this far and that we still have a marriage left.

So to get back to the reason I am writing. It is true that Ally has had some cultures that grew a rare bacteria ( it is actually a mutated form of a common bacteria) and it can be antibiotic resistant. This was more than likely the reason Ally spiked her most recent temp and probably the reason she has been needing oxygen for the last month or so. I want everyone to know that Ally has been acting fine. She is just as active as ever and of course just as happy.

There is an antibiotic that has been effective in some cases. A sample of Ally's particular bacteria was sent to Christiana Hospital and they will try to use this antibiotic on it. If it is successful they will then begin to give this medicine to Ally. Also no one has said that this will be terminal. We were told that in many cases it can be terminal and they are concerned that is possible with Ally because she is so immunosuppressed due to the rejection meds that she takes for the liver transplant. Again the fact that Ally does not act sick makes me very hopeful. I am hoping to get more information tomorrow and I will try to update again tomorrow night.

The good news Ally's liver functions have come down. They have been treating her with yet another antibiotic to decrease the inflammation in the bile duct. It seems to be working which means they hopefully will not have to place a stent in her bile duct. The transplant docs are hopeful that Ally will come home this week. She has not required any additional support from her ventilator and as long as she has no more fevers. I'm not sure if the PICU staff and the infectious disease docs are ready to discharge her yet.

Shane was right about this being the hardest thing we've ever faced. I am unable to think about Ally not being here, even though the thought has always been in the back of our minds. I am especially having a hard time dealing with the fact that Ashley would not grow up with her sister. I hope this update clears up some of your questions. I think when Shane writes the updates that he writes exactly what he is feeling or thinking. When I write the updates I edit my feelings and fears, mostly because I don't want to alarm anyone and I don't want people to think the worst. No matter what we need to stay positive and we must never give up hope. As many of you wrote in the guestbook, "miracles do happen" so please pray for Ally to have one.

Jill

If there was ever a time Ally needed you, it is now! Please say a extra prayer for her these next couple days. On Thursday we were told of a bacteria that may be developing in Ally's lungs. This bacteria has no know cure and is terminal. It has not yet been confirmed as of yet, and could take a week to be sure, but all the symptoms point in that direction. We were told of some drugs that are being used in Europe, and that a doctor in Wisconsin has had some success with these drugs to combat the bacteria, but there is no guarantee.

On top of all this, Ally's liver functions have gone up and it seems one of her bile ducts is enlarged. They are treating this with medicine and as of now are not planning anything else as of now. The thought is she could have a stricture of one of her bile ducts. This is yet another hard blow to deal with.

Finally, if things could not be worse, Ally's GJ tube site is just about as bad as ever. So bad they had to stop her feeds because the drainage was so much. This will have to be addressed ASAP.

So as you can see, this week has been our most difficult time ever. To hear that Ally could be taken from us is a feeling that cannot be explained in words. There are so many things running through our heads right now. We've have worked so hard, and spent so much energy fighting, that to hear Ally could be taken from us from a bacteria, is not fare! We will not give up, and we will continue to fight just as Ally is doing. As long as there is hope, we still have the faith she will be ok.

Sorry for such a short update, with little detail, but our time has been very limited and much of it will be spent with our girls at the hospital these next few weeks. The hope is to get Ally home to be with us as a family. Please pray for Ally to make it through these weeks ahead, she needs your prayers now more than ever.

As you all might have guessed Ally was admitted to duPont yesterday. She is in the PICU of course and she even has her old room. Thankfully she is doing well and has not run a fever since yesterday morning.

She has had the full run of tests. Yesterday they took a chest x-ray, did blood and urine cultures and drew labs. Today they did another chest x-ray and said that they saw some ares of haziness so they decided to do a bronch and get some specimens from her trache and lung tissue to see if there was something brewing that they just haven't caught yet. The bronch looked good so we will just have to see if those cultures grow anything.

Onto the liver. She had an ultrasound done today because her liver functions were elevated a little, especially her GGT so they wanted to have a look at her bile ducts. As usual they couldn't see them real well on the ultrasound so tomorrow she will have a CT scan to check the bile ducts.

She also had an EKG done today because her heart rate has been averaging around 160bpm and only going as low as 140bpm when she is asleep. We'll find out the results of that tomorrow. I am not too concerned about this because she has done this in the past and it has never turned out to be anything.

Dr. Katz came by to have a look at Ally's G-J site. She said that there is no simple fix for this and she will definitely need surgery to repair it, the question is when. First Ally will need to be off steroids and she is on the lowest dose she has ever been on so hopefully she will be done with those soon. Then they would prefer to wait until springtime so that Ally is not in the hospital in the winter and exposed to all the respiratory viruses that occur than. We can wait until spring if we come up with a plan to control the drainage from the G-J site which is causing her skin to breakdown and could lead to more wounds.

To top the day off Shane's parents were supposed to come visit and bring Ashley down to me to stay for a couple of days. By 7:45 they weren't at the hospital and I was getting worried. At 8:00 they called to say they were not coming. They had been borrowing one of our cars because last week they had hit a deer with their car. Needless to say right before they got onto the highway the engine and brake lights came on and the car started to smoke and smelled like it was burning. The were unable to steer the car but there was a garage right where they were so they got out and the mechanic looked at it. Thankfully everyone was safe and hopefully the car will be fixed tomorrow.

We settled for talking to Ashley on the phone and looked to the bright side which is, since Ashley isn't coming until tomorrow afternoon I will be able to go with Ally for her CT scan.

Our life has been crazy lately or maybe for the past two years, but we are trying to stay positive. It is definitely hard though and today was a tough day for me but than there is always hope that tomorrow will be better or maybe at least we'll win the powerball!!!

Take care, and please pray that Ally's CT scan goes well and that we can hopefully come home again on Thursday.

Jill

This past week things have been extra difficult. Last Monday Ally started not feeling well, and ran a low grade fever. When the transplant team found out about the fever, they wanted Ally brought down to the hospital to be admitted to the PICU. Jill refused. Ally was at the time happy. Why should she sit in the hospital for a low grade fever? Needless to say, they said she could stay home, as long as the fever did not get worse. Ally did stay home all week. However, liver functions were up a bit throughout the week and her stomach does not want to stay in her belly. More labs were drawn for the liver, and cultures for the fevers. On top of all that is going on with Ally and her cold, Ashley now is now sick!

It just never stops. This morning at 4 a.m. our nurse called for us saying Ally had a temperature. As the morning went it only got higher. Ally has an appointment today, so we will see if this week she gets to return home, after missing out on a week at duPont last week. If I know our luck, we will get to spend the week there.

I know we use to say, no updates or news means things are good. Well I was wrong. The reason for lack of updating is we can never get a chance to stop and breathe for a second. The saga continues...

If you have a chance check out the Interview with God on Ally's list of sites. After reading it for the first time, I felt as if it was reading my mind, they were all the things I've either learned or have felt with having Ally in my life.

What a busy week. If it can happen, it happens to us. Ally had two visits to duPont this week. One was scheduled, and one was not.

The first trip it seemed things finally were going our way. Ally has continued to gain weight, and for the second week in a row we have been able to reduce her TPN amount. Last week we went down to 14 hours a day, this week we reduced more calories from the TPN. We also were able to reduce the amount of steroids she gets since her liver function has been so great. We also went to full strength formula which will give Ally some extra calories per hour.

Now some of the bad news.

Ally has continued to have healing issues with her GJ-tube area. We tried to cortorize it some more, but that has not worked out so well. Some of the bad news earlier in the week was that the doctors thought part of her bowel along with her stomach was now sticking out of the hole in her abdominal area. This meant surgery, and more set backs on feeding. Then later in the week, the transplant team took a look at the GJ area, and said that it was not her bowel, but just stomach tissue. They said we could not do anything until Ally was completly off steroids. Stopping the steroids then would help the healing process. One reason why she now doesn't heal as so as it is. Surgery then could be done maybe in the spring if the area does not heal by then. The questions that remain are, can we still use the same site for a feeding tube...? will we need to go back to feeding tubes down Ally's nose...? or will we need to create another hole in her stomach.

All of this has created a lot of stress for all of us. Just when we think we are making progress, we get knocked to our knees. Someone sure likes to set the challenges high for both Ally and us. Through it all, Ally has continued to grow and keep that smile. She had changed so much in the last few months. She understands everything you tell her, and is even learning some sign language. Physically she is also stronger. She still does not walk, but is thinking about crawling. For good reasons, I think she is afraid of falling on her belly. I would too, if my stomach was hanging out. Anyway, she continues to try and grow as best she can. We do not push her too much.

We also have been trying to get out of the house as much as possible with the girls. Yesterday we took a day trip to the aquarium. Ashley of course was afraid of the dark hallways and music, while Ally was loving every minute of it. Seeing her watch the fish and other animals, makes it all worth it. She was all smiles!! We want to give Ally as much exposure to life as we can, as long as we can continue to have the strength as parents to keep up with all the work around us.

Continue to pray that Ally's wounds heal, and feedings continue to increase. Also be sure to see the new photos.

If I thought last week was crazy this week certainly topped it! Ally came home from the hospital on Thursday afternoon. But as luck would have it she had to go back down and spend the day there on Friday too. Right now she is sleeping comfortably here at home.

Luckily Ally never seemed too sick from this past last line infection. She had one positive culture on Monday and everyone since than had been negative. So, we were all set to come home on Thursday. However, Thursday morning when Ally's day shift nurse came on she found Ally asleep in bed with a small puddle of blood beneath her. Somehow her central was cut all the way through and she was bleeding out onto the bed. Her nurse quickly clampled the line off and called for some help. Because of the amount of blood they figured the line was cut for about an hour. The were able to repair the line and Ally seemed to be unaffected by the whole thing.

Since there was a tear in the line they decided to do another blood culture since the line was open and laying on the bed it could have been exposed to bacteria. Like I said as luck would have it we left the hospital Thursday afternoon and Thursday night around 9:30 I got a call from the hospital telling me that Ally's blood culture that was done after the line had torn had grown bacteria which means another positive blood culture.

Friday morning we headed back down to good old duPont to have another blood culture done and to start a new round of antibiotics. It was another long day there, we sat in day medicine for 3hours to receive a half hour dose of medicine. But thankfully Ally didn't have to stay.

Otherwise things have been okay. Her G-J tube site is still a mess but we are working on it and I have to beleive that it will get better. We had a birthday party tonight for Ashley so Shane will update with some pictures soon. Shane and I and Grandmom and Grandpop got the girls a swing set. It was kind of birthdays/Christmas gift. Anyhow they both love it and I think we will be spending every day outside on it until it snows!

Take care and pray for a calm relaxing week for everyone!
Jill