Ally Heintz

Yeah!!! We finally made it home!!! Around 3pm this afternoon Ally, Ashley, Grandmom and myself, left duPont and headed straight home! Of course this was all after some more exciting events.

Shane last updated on Saturday so I'll pick up where he left off. Saturday evening we had come home to spend a night at home. We had Grandmom lined up to visit Ally Sunday morning so we didn't have to be back at the hospital until Sunday afternoon! However I wasn't thinking and decided to go grocery shopping Saturday night since we had no food in our house! This was obviously the jinx!! Sunday we got up early and went for a bike ride. When we got back home I called the hospital to check on Ally only to find out that she was very unhappy and that her liver functions had gone up yet again.

Not wanting to waste any time the docs decided to start Ally on high doses of IV steroids, again. When I arrived Sunday afternoon she was back to her normal happy Ally. Monday morning rolled around and yeah, her liver functions had started to come down again. Unfortunately they told me that they would be giving Ally a complete dose of IV steroids which meant we would have to stay until Friday. I expressed that I was very unhappy with that and after thinking things through the docs decided it was best to get Ally home and would allow me to do the steroids and IV antibiotics. This meant Ally could come home on Wednesday.

Yesterday, I arrived at the hospital, met by the transplant team informing that Ally's one liver function had skyrocketed over 1000 this was obviously concerning, however, her other two liver functions had continued to come down. This all meant that Ally needed an ultrasound to see if a bile duct had become constricted. That would mean Ally would need to have a stent placed to keep it open. Of course they could not see anything on the ultrasound so she need to go for a CT scan. The problem with a CT scan is that the patient ( if a child) usually needs to be mildly sedated or asleep so that they lie still for the scan. Ally does not sedate easily!

After her 4th dose of 2 different kinds of mild sedation meds it became apparent that Ally would not go to sleep. Now the big guns were coming out and Ally would definitely go to sleep with a little Propofol. Finally asleep, they began to inject the contrast which is used for CT scans, through Ally's central line. What should happen?? That's right, Ally's central line ruptures!!! Now we need to clamp that off and hope that it can be repaired, yet again. Also now Ally needs to have an IV started so that they can complete the CT scan. Needless to say she was now awake again and was letting everyone know that she was not happy with the many sticks that it took to start an IV.

Finally the CT scan was completed and her central line was repaired and the best news of all, the biled ducts looked okay!
Go figure, I guess we just needed a little excitement. So for now we are home and Ally is resting comfortably, We have to draw labs tomorrow but we are not scheduled to go to the hospital until August 22nd. If we make it that long! I have not gone more than 5 days without a trip to duPont since January 3rd, so I'm really looking forward to this 10 day break!

We'll keep everyone posted on any news, I shot some new video of Ally the other day so hopefully Shane can put that on the computer soon. Thanks for all the prayers during this last hospital stay it was a very long five weeks!

Ally continues to keep things interesting. Wednesday Ally had an upper GI test done to see why things were moving so fast through her bowel, and not allowing her to advance on feeds. Much to our surprise, Ally has a loop of bowel that is dilated. When the contrast moved through that area everything slowed up, then continued down through the rest of the bowel. This dilated portion is above the area from last year where she had this problem before. That was the time she had the STEP procedure done. This portion is much smaller, and the doctors are not sure what will need to be done with it. This could mean yet another surgery. Dr Dunn is still discussing a plan of what he thinks needs to be done. We know that touching Ally's bowel, could mean more time of not feeding well, and an extended amount of time in the hospital. All the things she just does not need right now.

Thursday, Ally then started with a temperature. They started the meds to bring down the temp. It seems to them that the loop of bowel that is dilated, could be creating bacterial overgrowth casuing her to spike a fever. Also Thursday night, we started Ally on meds to control the amount of bile her gut is producing. This is one of our last options to help Ally advance in her feeds. So far it seems to be helping. The last day or so she has had less output, and better looking stools. I know that doesn't sound so great, but as Dr. Katz once said "Stool is my life". And is ours for sure right now! If things continue to move in the right direction, we will advance feeds. Right now Ally is still at 5cc/hr. 3/4 strength formula. I think the next move is to go to 5cc/hr. full strength. Then move on to whatever she tolerates from there. Hoping the whole time her liver can sustain the full strength TPN.

These last 5 weeks have been the toughest weeks yet for us since Ally has been born. Maybe its because we have not made any progress yet since having a new liver. Maybe its because we made the decision for this last surgery. Maybe its because we may have to make more tough decisions to help Ally through all of this. Or maybe its because we are afraid of what might happen next. There are so many things that could happen, and we know we can only control so much. To explain everything that we feel is impossible, and to expect anyone to understand is just the same. Thorough all of this, we will continue to keep forging ahead giving Ally every possible chance at a happy life. To give up on her when we learned she had gastroschisis was not an option then, and to give up on her now is just the same. The only difference between now and then is we are a much stronger family, knowledgable, and understand what it means to have friends and family that support us through tough times. It truly makes you aware of who is really there to help when you need it most. To this day, our parents still have not yet waivered a day in supporting us, Ally and Ashley. I guess this is were we get most our strength from. Of course there are also those few, who once were strangers, and are now closer than family.

Well enough of that, Nurse Karen said she never liked when I wrote these types of things.

Our hope is that Ally will be coming home Tuesday. I guess we will wait and see until then.
Continue to pray for Ally and her feeds. Your prayers I'm sure are being heard.

Well, this past week was a very busy week. We spent last Saturday at the hospital with Ally, and that evening drove 2 hours with Ashley to O.C. Maryland to stay over night with Jills family. Sunday, was a great day at the beach. Ashley had fun, but refused to go near the water. Later that evening, Jill and I drove back to Wilmington to spend the night with Ally. Needless to say, before we left to go back to the hospital, we had received news that Ally's liver functions had sky rocketed and her wound around her GJ tube was getting worse. So much so that you could see Ally's stomach. The hole was about the size of a quarter. We were not very happy to hear this all happened it such a short amount of time since we had left.

Once back at the hospital Sunday, we played with Ally, and she of course was nothing but smiles. I still can't figure why she thinks all this is such fun. If I had that wound, I would not be near as happy. Anyway, Monday came and Jill and I spent most the day at duPont. Ashley stayed with Grandmom and Pop at the shore. As Monday progressed, we had a morning meeting with the surgeons to discuss why and what steps needed to take place in order for Ally's wound to heal. After some talking, it was decided that only one person a day, clean the wound. That would either be the surgeon or Jill, no one else. This way Ally would get consistent care to the wound. So far it seems to be getting better. It will take some time to heal.

Monday evening, Jill and I went back to the beach, and spent all day Tuesday there. This was only Jill's second whole day without ever seeing Ally. Tuesday was fun, but it was difficult to have to much fun, knowing Ally lay in the hospital with that opened wound. I don't think it was totally possible for Jill and I to completly relax knowing Ally could not be with us. And to make things harder, seeing others with their entire family at the beach, only adds to guilt and hurt you feel being there without Ally. We did our best to show Ashley a good time, but by Wednesday, it was time to get back to our reality, and travel back to duPont.

Wednesday, Ally was so happy to see us. In fact we couldn't go to dinner until 8:30 that night, because she was scared we would not be back.

Thursday and Friday I went to work while Jill stayed with Ally.

This Saturday, Ashley came back from the shore and spent the rest of the weekend with us at the hospital. She was so glad to spend time with Ally. She really did miss her.

So as you can see the week was busy.

Now for how Ally is doing. Wednesday when we first seen Ally, we were a bit disappointed to see she was only feeding at 5cc/hr. Before Ally had the GJ tube surgery, she was at 20cc/hr. It now seems that Ally's bowel does not want to tolerate the formula as well as before. Why? Who knows. If I knew I could probably solve this all on my own. Ally the past 5 days has had stool after stool. Her poor little bottom is getting to be so sore and broken down. The good news from this is that things are moving through, and she is not having any drainage back up into her stomach and out into her g-tube bag. The bad news is that things are moving so fast, that her bowel in not absorbing the nutrients like it should, causing us not to be able to advance feeds. This is very bad!!!! And is causing alot of stress for both Jill and I. We know what this could mean. As long as Ally can't advance feeds, her TPN (IV fluid or feed) stays at a higher dose, with all the amino acids in it which destroy the liver. This is what happend before. Dr. Dunn said today that we will continue to hope things move in the right direction, the liver holds up, and we can move forward. But it will be slow. If Ally's liver starts to fail because of the TPN, she will then need a liver and bowel transplant. Which means the odds of survival are not good. We also would be spending time out in Pittsburgh for that procedure. Making everthing that much harder on all of us. To think that we haven't been able to sleep in our own beds in weeks, if we had to go across the state it would be much longer than weeks from home. Lets hope we don't have to go that route!

Now you can see why its hard to take a break and enjoy things. Its because of issues and stress like this. Please pray that Ally's bowel starts to tolerate her feeds and she can continue to take the steps forward to recovery from her wound.

Enjoy the new photos.

As usual there is some good news and some bad. Ally's liver biopsy looked good and they figure her liver levels only went up do to the stress of the surgery last week. The bad news, she got a hold of her g-j tube and pulled on it hard enough to make it start to leak around the insertion site. So now we are dealing with trying to get the hole to close a little and finding the best way to control the drainage.

Unfortunately Ally will not be making it to the beach this year. We were planning to head there this coming Wednesday instead we are hoping Ally will be heading home. Shane and I will be traveling back and forth from duPont to Ocean City Maryland on Sat, Sun and Monday. Ashley of course will be headed to the beach with us and will stay there with her grandmom and pop when we travel up to duPont. We already have Ally's nurses lined up to keep her busy and her Gram is going to come down and keeep her company.

Also yesterday Ally ran a temperature so that meant urine, trache and blood cultures. She was off antibiotics for one whole day but they had to restart them because of the fever. If her cultures are still negative till Saturday than they will be able to stop the antibiotics.

Feeds are going pretty slow, right now that and the g tube drainage are what is keeping us here. However, Ally had a great day today and we were able to turn off her oxygen tonight so she is on room air again. Unfortunately due to all the recent set backs we were told that Ally will have to keep the trache in until next spring. In the grand scheme of things this is really minor. We already have dealt with it this long a couple more months is no big deal. Plus having her off the vent makes things so much easier.

Hope to update sometime over the weekend, if not we will update early next week maybe with some beach pictures.

The last two days have not been going to good for Ally. Yesterday we had the hardest time just getting a smile. A clear sign that something was going wrong.

Yesterday her liver function levels have gone up quite a bit. Ally also had a hard time keeping her SATS (breathing) up. She just was not happy yesterday.

Today, we had a meeting with GI and transplant to go over a plan. It has been decided that one of the docs will be our primary doc and that is who we will call with problems. She will then direct that info to whichever specialist she needs to. Also they said the earliest Ally would go home would be Friday.

Ally also had another liver biopsy today because her liver functions had gone up again this morning. The biopsy was not done till this afternoon so we will not have the results till tomorrow. Tonight they are starting her on some IV steroids which starts treatment for a possible rejection episode. We will know tomorrow from the biopsy results if this is true rejection. If so that means Ally has to get a full dosing of IV steroids which means we are here until about next Wednesday, we'll see what happens.

We will put an update on tomorrow when we know some results.

Ally's surgery went very well today. She was supposed to go into the OR at 7:45 a.m., but did not make her trip until 9:15. Ally was in the OR for about 2 hours.

She came back awake, and even gave her sister a smile. The entire surgery went well. No problems. The tubes are finally out of her throat! Even though we have seen Ally before without tubes on her face, this time was much different. I guess it just feels good to know we won't ever see her have to have tubes and tape stuck to her face.

Now that the tube is in place, we have to make sure Ally does not pull the tube out of her stomach. If she does, it means we go back to the OR. The doctors said we need a least two months of healing, and if she would pull it out then, we could re-insert it ourselves. Needless to say, Ally was only back from the OR 10 minutes, and she got her fingers caught in the tube, almost yanking it out. We need to ensure she trys none of her tricks with this tube.

The results of Ally's bronch to check her airway for any damage, turned out great! They did not see any damage to the airway or vocal cords. They also think that she does not need a longer trache. So the hope is that with these results, we can get rid of the trache for good before fall.

The liver biopsie results just came back from the lab. That news is also great!! The docotor said her liver is doing just fine. Her liver function has almost reached the normal range. It must be from all those prayers you have been sending her way. Keep them coming!

As of now Ally has been needing some pain meds, and is wanting to just sleep. As would anyone. Maybe tomorrow she will be closer to her old self.

Speaking of tomorrow, we have a family meeting at 11 a.m. to dicuss the plan of attack going forward with Ally's feedings, both with GI and transplant. The hope is to start feeding tomorrow if Ally is ready. And maybe, just maybe, coming home by next Friday or so. We will see.

We will update again later tomorrow.

Well if you haven't been keeping up on the latest news. You have a lot of reading to catch up on.

After a very eventful Friday, things kinda of settled down by Saturday morning. So much so, that once Ally was ready to take her Saturday afternoon snooze, we took some time to visit the local Wilmington Ice Cream festival. It gave us a chance to get away, and also the opportunity to spend some time with Ashley. She had a blast! Face painting, cotton candy, games, and ice cream where what made being in DE fun for her that day. You can check out some of the pictures in the new album from this weekend.

After spending three hours at the festival, it was time to go back to duPont. When we got back, Ally was out at the front desk entertaining all the nurses and docs. It seems that she was lonely by herself after waking up from her nap. We spent the rest of the day and weekend just being a family at duPont.

After reviewing the results from Friday's monitor check, (the one that records Ally's heart rate, breathing etc.) it seems that it was only a second or two that Ally was not getting any oxygen. The only conclusion to what may have happened is that while Ally was sleeping, she pulled on her trache, only to pull it out half way, causing it to block her airway. She would have been better to just pull it out all the way. Because of Friday's episode, the doctors ordered an ultrasound of Ally's hepatic artery to her liver to check the blood flow. Just in case the lack of oxygen may have harmed the liver even more. Turns out there were no further injuries. We have also ordered a trache that will extended further down her airway, making it harder for her to pull out. Ally thinks its a fun toy to play with. I'm sure she will be up to the challenge of pulling out a longer trache.

The rest of the weekend things kept quiet. We will see what the rest of the week brings us.?

Please continue to keep Ally in your prayers, as this week will be one more hurdle to overcome.

Well, we almost lost Ally last night. But thanks to nurse Jen we still have her today.

If you don't know by now how things work with Ally, and how things change, boy would you be in for some surprises, just like today's update.

Last night Ally went to bed, all was well. That was until at 11:30 when all her alarms started going off. Nurse Jen came running in, only to find Ally a nice shade of blue, and not really breathing. Her heart dipped into the 30's. As they bagged her they realized her trache was not in. So they quickly did a trache change and started chest compressions. Ally quickly came back, and soon after sat up smiling and ready to play with toys. I think she thought the staff was all there for play time when she came back around. Needless to say it was another one of those nights.

This morning Ally had about twenty people in rounds today, trying to figure out what caused her to have a brady cardia attack, and also to decide where to go from here.

As of now, we have assured ourselves of not going home for a few days, before surgery. Who knows, surgery may not even happen now on Thursday. Ally's feeds have been turned off, but GI was just in and said we may run some small amount of formula just to keep the gut stimulated.

GI and transplant are going to sit down soon together to start with a clean slate, and try to figure out the plan of attack at getting Ally back to tolerating feeds and feeling well again.

So far Ally's cultures have been negative. Of course you always need the full 48hrs. to ensure no infection. As far as the vomitting goes, it may be caused from numerous things, being dehydrated, or maybe the immodium they had been giving her to slow her stooling down a few weeks ago. Right now there is still many unknowns.

What would a day be like, not to have so much excitement? Nothing surprises me anymore. And I'm sure if you've been following Ally long enough, you feel the same way.

As we find out more, we will continue to update daily. Just as you think not much is happening with Ally, you now have all these updates to read! :)

There's never a dull moment with Ally!!! Trust me.

Earlier results from the upper GI tests show that everything is moving through the bowel. Its not 100% approved yet, but sounds if it will be OK.

The doctors are going to treat Ally for an infection for the next 7-10 days. We may be able to come home on Monday.

Transplant was just in and said they are planning to do the g-tube surgery, and bronch next Thursday. So if we can get a few days back home, it will be a little bit of a break from the hospital. They also said that after the surgery we may need to re-evaluate the process of feeding and some of her meds to determine what is causing Ally not to advanced in weight. We could be stressing her gut to much since Ally hasn't gained any weight in the last year. I guess we will see after surgery.

That's about all for now. Ally has had a busy day, not much sleep since she's had about eight x-rays keeping her from taking her afternoon nap. She should sleep well tonight.

We will update again soon.

Just like it would figure! Ally's scheduled surgery has been cancelled for tomorrow. Instead we will be having an upper GI test done to test for a possible bowel obstruction.

We tried a few days, even a week in advance to let the doctors here know that Ally has not been doing well, and that she has been vomiting a lot, but no one listened or seemed to care until today. There's seems to be lack of communication between folks in transplant. So now we must pay the price by being here that much longer.

Ally was fine most of the afternoon today, but as the night has been progressing she is continuing to decline. We have started her on some more fluids, stopped her feeds and are now preparing for tests tomorrow. The good news to take away from tonight is that her labs for her liver functions are better. Will take that.

Who knows what to expect now? I guess we will see by tomorrow what the next step is. My guess is that even if she does not have an obstruction, surgery for a g-tube will not take place until next week sometime. Jill says we are not leaving here until we get it! She means it too!

So back to the all to familiar routine of living at duPont. To be honest it feels as if we never left.

We will update again tomorrow after the tests.
Say an extra special prayer tonight or Thursday for her, she needs them more than ever.

The weekend did not start off very well for us. Friday night Jill and I had a few hours to ourselves to go and eat dinner alone, while Aunt Jeanne and Mandy baby sat Ally and Ashley. When we returned, it turned out that Ally's blood pressure was extremely low. It continued to go down, leaving us only one option...calling transplant. We thought for sure the weekend was going to be at duPont.

As we waited for transplant to call, Jill called our friends the Maichers (John, Sandy & Al) to see if John had a hydration bag to get Ally's fluid level back up. Sure enough they did, and I quickly made a speedy trip to Pottstown to meet Sandy and Al to get the bag of solution for Ally. Thanks to both of them for not only saving a trip to Delaware, but saving Ally, and our weekend!!

After running the fluid, Ally's blood pressure seemed to stabilize. Saturday came, and Ally was still not herself. The last week or so, Ally has been vomiting a lot, and I mean a lot!! This is what was causing her to be so dry. Anyway, we still were determined to make our first trip as a family to the mountains, to spend a night with family and friends.

Sunday we made the trip. It wasn't without a lot of vomiting, but we made it anyway. After getting there we all had a good time. Ally had her moments, but like the strong little girl she is, even after vomiting, she went right on playing, smiling and laughing.

Monday we spent most of the day packing and driving home. Both the girls had a good time on the trip.

This week is going to be very long. We are planning to call transplant tomorrow, to let them know about all of the vomitting, to see what we should do. Our guess, is we could be looking at making our trip to duPont a day earlier than expected.

Ally will have her g-tube, bronch, and liver biopsie all on Thursday. Most kids would only be in a few days, but we expect with Ally and all that is going on right now, at least a few weeks in the hospital. Hopefully in time to make our next trip for a few days to the shore.

We update again soon, enjoy the pictures!

Of course just our luck Ally's labs were not able to be read, so we had to take her to duPont this afternoon to have them redrawn. Fortunately they have not changed much since Monday. The plan now is to admit Ally to the hospital on Wednesday for her G-tube surgery and bronch, while she is in the OR for these procedures they will also do a liver biopsy to try and figure out why her liver functions keep jumping all around.

Hope everyone has a nice holiday weekend. We are planning our first overnight stay with Ally at Grandmom and Pop's cabin. We are just staying for one night. It is our practice run for when we go to the beach later this month. Enjoy the weekend we will update next week when we check into Hotel duPont. Someday maybe we will stay at the real Hotel duPont!

Well it wasn't the best check up for Ally but than again things could always be worse. On the good side Ally was able to gain some weight this past week, despite all the vomitting. I think the extra fat in her IV fluids is helping. On the bad side her liver functions took a pretty significant jump up. Because of the jump Ally had an ultrasound performed yesterday. As far as they could see things looked unchanged since her last ultrasound, which is good. Tomorrow we draw labs at home and get the results on Thursday. If her liver function levels are still elevated or increased than we will be stopping Ally's blood thinner and she will be having a liver biopsy done later this week or the beginning of next week.

We know that everyone is pulling for Ally but please pray that Ally's liver function levels come down to normal. Take care and we will update Thursday night when we have some results.

Jill

Hi everyone, I figured I better take over here since Mom and Dad are slacking off with the updates again. Last Monday I had checkups at duPont with GI and pulmonary. Mommy also drew my blood for labs before we went so we dropped them off too.

My GI checkup went okay the docs are a little frustrated because I haven't been gainig any weight. Actually I weigh the same now as I did when I checked into duPont last August. That's hard to believe when you look at me but it's true. Anyhow they added some extra fat to IV fluids so we will see how my weight is this week.

The pulmonary visit went well. Dr. Chidekel seemed pretty impressed with how well I am doing off the vent. I'm basically only on the CPAP at night and when I get my breathing treatments. We also turned down my pressure support setting for CPAP. This week I'm getting a special speaking valve for my trache. It will take some getting used to but it will make it a lot easier for me to make sounds and to try to talk. Dr. Chidekel said he would like to have me decanulated in September but it is really going to depend on how well I do with my surgery for the G-tube. If it takes me a long time to recover it could set my respiratory progress back a little. If I don't get decanulated by September I have to wait until April. We'll see!

Unfortunately my liver function levels went up a little last week. We drew labs again on Thursday and one liver enzyme level stayed the same, one came down and one went up. I like my liver to be a mystery for everyone. I have labs drawn again tomorrow. My mommy is a little worried because I have been vomitting a lot this past week and I ran a low grade temp Thursday and Friday. The last time I did things like this I ended up having a rejection episode. I guess will know more tomorrow once they have my lab work back.

Other than the vomitting and fever I had an okay week. The highlight was watching my Pop and Rowdy Randy compete in the Fear Factor competion at Boyertown's Sidewalk Expo. They didn't win but it was very entertaining and I was very pround of both of them.

Everyone try to stay cool this week. I'm hoping for a little rain so the grass softens up. Don't forget to check out my new video. It was my first bath with my sister!

Today turned out to be one of those days.

We had planned to spend breakfast at Jills Moms house with the rest of the family, but right after we arrived, as we were getting Ally out of her car seat, some how her central line (this line goes into her heart which feeds her IV/TPN fluid) got caught on the seat and tore completly through. This meant instead of having breakfast, we would be making a trip to delaware to the emergency room to see if the line was able to be repaired.

We thought for sure Ally would need a new one since she already had this repaired a few months ago for a small tear. So we packed our bags and made a trip to duPont.

We spent most of the afternoon in the ER. Lucky for us, room #7 was just that. LUCKY! The docs repaired the line and sent us home.

Ally in general is doing OK. Thursday and Friday she was not quite herself. It seems she had some bacterial overgrowth happening in her bowel. The docs gave us some meds, and hopefully this will clear things up. She also has needed some extra breathing treatments and suctioning of her trache, because of all the stuff making her feel so ill.

Tomorrow Ally will take yet another trip back to duPont for her weekly labs. Pray that they continue to be OK.

Thanks Nurse Karen for my father's day message!! I can still remember last years fathers day and how you stayed late to wish me a happy fathers day, and the wonderful surprise! You sure did make some memorable moments for us!! Thanks.

HAPPY FATHERS DAY to all!

Shane

Ally spent most of today at duPont, getting her labs drawn. The good news is that her liver function levels have come down. So much so, that Ally does not need blood drawn Thursday for more labs. Her next trip will be next Monday. If all goes well the rest of this week, we will also be able to increase Ally's feed 2cc per hour. GI first needs to approve the change.

Some other news regarding Ally's health; she continues to be doing very well off the vent. Yesterday she was only on the vent for about 2hrs. As of right now, she basically is only on the vent when she is sleeping.

On July 7th, we are planning to admit Ally into the hospital to have a G-tube placed into her stomach. This will allow her to continue to want to try eating orally, and also help with speech.
Most importantly, we hope she feeds even better then she currently is progressing. I dislike the idea of actually having to go back, but this is what will get us one step further along. With as many hours as we have logged staying in the hospital, whats another week or two?

Enjoy all the new photos, and we will continue to keep you updated on Ally's progress. Please continue to keep Ally in your prayers, and if you could Ally said to say a special prayer for her buddy John Maicher (his link is off of Ally's site).

Shane

What a great week! Ally and the rest of our family had such a fun time this week. The weather was great, a little hot but still a nice week.

Ally had some labs drawn on Wednesday and then we got her results on Thursday. Two of her liver function levels came down and one has gone up. The docs aren't sure what that means because typically the all go in the same direction. So, tomorrow we are off to duPont for a visit, and more lab work. Ally looks fantastic though, so we are hoping for good results tomorrow.

On Friday we took the girls to fun days in Boyertown. Ashley had a good time with her cousin Katie on the rides. Ally didn't go on any rides but she had fun just being out and people watching. On Saturday we took the girls to the family fun day at Galeotti Family Chiropractic Center in Oaks. This event was a free admission event, but any donations made will go to Ally's recovery fund. It was a little too hot for Ally, but she had fun hanging out inside the office. Ashley had fun outside in the moon bounce. If anyone is looking for a chiropractor or some massage therapy, Chris and Wanda Galeotti are some of the nicest and most generous people I have ever met.

Later Saturday, it was home for naps in the afternoon and then Ashleys' babysitters and Ally's nurse arrived. Shane and I were off to have a night of fun at the beef and beer. We had a great time and as always we were amazed at the amount of people that came out to support Ally. It was so nice to see so many friends and family that we don't get to see that often any more.

Sunday we spent the morning outside playing and then in the afternoon we headed to Grandmom and Pop's for a picinic and some swimming. This was Ally's first trip to the pool. Needless to say she wasn't to wild about the water but she did okay for her first time.

We just wanted to thank everyone that organized and helped with the Beef and Beer event, I would have to say it was a huge success. Also a special thanks to Chris and Wanda Galeotti for the family fun day. The winning ticket for the Florida trip was drawn Saturday at the beef and beer and the winners were Bill and Miriam Spaide, congratulations! Thank you to everyone who bought tickets, this was a great fundraiser. Also a huge thank you to Aud and Larry Eddinger for making this trip possible by donating the one week stay. Finally thank you to Judy Hunter of Hunter HR solutions and Bill Hunter of Affirmative Funding for donating $400 used towards airfare for this trip.

Shane will try to update tomorrow night so we can let you all know about Ally's lab work. Also we have new pictures!

Thanks to everyone for all the support and prayers. For those of you that don't know we have a link off of our website for John Maicher. He is a friend of ours who was also waiting for a liver transplant. John and his family have been having some very difficult times lately so please keep them in you prayers.

Take care, Jill

Another busy day! Ally had a check up at duPont today with the transplant team. Unfortunately Ally's liver functions are elevated again. Not so much that we had to stay but enough to cause some concern. As positive as we try to stay it is hard not to feel discouraged. Everytime there is a little set back like this we know that it puts Ally closer to needing another transplant.

Overall she looks great and you would never know that anything is wrong by looking at her. She had a great week home from the hospital. We did some bike riding, played outside and went to the park. Soon it will be time to go swimming at Grandma's house. Shane and I even got a night out. On Friday we had a wedding to go to. Ally had a nurse come and stay with her while we were gone ( thanks Kim!).

Ally will have lab work drawn later this week and we will see what her liver levels look like than. Shane and I are planning to go to the Beef and Beer this weekend depending on how Ally is doing. We have nursing coverage for her and Ashley has a babysitter. If anyone is interested there are about 20 tickets still available. You can contact my mom, Mary Kay Heimbach @ 610-367-6693.

Also don't forget the family fun day event at Galeotti Family Chiropractic Center 1003 Egypt Rd. Oaks. For more information call 610-935-3066. Located on the corner of Longford and Egypt Rds. Event is from 11am to 4pm admission is free donations will be accepted to benefit Ally's recovery fund.

We will update when we have some news on Ally's next labs.
Jill

Today was the day we all been waiting for, coming home. It feels great to be back home again, a chance to be a family and sleep in our own beds. Even though we have spent that last 14 of 16 months in the hospital, and only being home for the longest of 4 weeks straight, this last stay seemed to be as difficult or even harder to get through. I guess it felt this way because we had a taste of what it would be like to be a family at home. I know that seems strange, but being away from home, and seperated as a family, brings alot of stress and strain to all of us.

Ally too was ready to come home. By Saturday she made it clear that she had enough fun at duPont and was ready to leave. She kept us all busy by pulling her tubes and trache out, only to make more work for everyone. She's learned that doing this gets the attention she's looking for at the time, and also has learned the word "No" means just that. Like all kids, it still didn't stop her.

When we arrived home this afternoon, Ally was excited to see her kitty's, toys and room again. But what brought the most smiles, was seeing her sister. Jill and I also suprised the girls by getting some bikes and a trailer for Ashely and Ally to sit in. It first didn't go over well with Ashley, but once Ally was in, Ashley of course jumped right in. They both had a great time. We thought getting the bikes would give us the chance to be out doors, (since Ally and Ashley love it outside), get some excerise, and take advantage of the great trails we have just minutes away in the Montogomery County Park system.

It seems that we learned through all of this, that when we have a chance to do something as a family, we need to do it and not wait. Every chance we get, we plan to make our days fun and enjoying. I guess we learned not to take the days we have for granted. Like most people, you can get caught up in the everyday hussle of things and not enjoy the little moments. For us, that has changed. We can never be sure of what tomorrow will bring, so we live for today, and will continue to be that way forever. I think living this way we will be more aware of just how special things are to each of us, and enjoy the good times even more.

Anyway, its good to be home, but our work has not changed. Ally will be on some new meds to help control her liver functions, and in about 5 weeks or so, we will be going back to duPont to have a G-tube placed into Allys stomach. With having this tube placed, we can get the tubes out of her nose, not worrying about her pulling them out, and hopfully by then her feeds will be doing much better. This form of a feed tube will also be a better experience for Ally to learn how to eat orally, rather than some tubes hanging down her throat.

So we will see how the rest of the week goes. We look forward to staying home, and enjoying the nice weather.

Enjoy the new photos, and we will try to update again soon. Remember, "No" news is always good news!!!

Ally is still on track to come home on Monday. Her liver function levels have been improving. She is busy being naughty by keeping the nurses here entertained. She has pulled out her ND tube more times than I can count. She also thinks it is fun to diconnect from the ventilator because she knows it alarms and than someone has to come into her room. Anyhow, we will update Monday when we get home.
Jill

Hi everyone I thought I would write my own update since my parents are being lazy about keeping my site up to date. I'm still here at duPont. I feel like I'm on vacation the nurses and the residents entertain me day and night. At home mommy makes me sleep at night but here I get to play.

The good news is I no longer have a fever and all my cultures remained negative. The bad news is my liver functions have been on the rise. Yesterday the docs started treating me for a rejection episode. This means I get high doses of steroids through my central line. This does not mean I will ultimately lose this liver. I can have a rejection episode and be treated for it and not have a problem again.

Typically when someones liver functions rise after transplant a biopsy is performed. However, I am still on a blood thinner from when I had my clot so they would have to stop that med before they can do a biopsy. If they stop the med they are afraid my artery would re-clot so they have decided to just treat me for rejection without performing the biopsy.

Today my liver functions came down a little. As long as they keep coming down I will be able to get out of here on Monday (memorial day). If they start to go back up than they will have to stop my blood thinner and do the biopsy. I know this is all a little confusing, but mom says that the important thing is that I'm feeling well and looking good.

Mommy will update Thursday night or Friday morning. Hopefully she won't have to much news to report just that I'm on track to come home on Monday. I miss all my home nurses and can't wait to get back home and play. My big sis is coming to night to visit. I better go rest up, she's a handful! Take care everyone.
Love,
Ally

We are still hanging out at the hospital. We thought for sure Ally would get to go home on Friday because she had such a good day on Thursday.

However, when I arrived at the hospital on Friday ally was not very happy and wasn't looking so good. Her heart rate was around 200 bpm and her platelet count had dropped significantly. They did an ultrasound to check on the liver and pulled off some more labs. Again nothing has shown which leads everyone to believe that she ahs something viral going on. She took a 5 hour nap than yesterday and woke up pleasant.

We will see what today holds! Take care,
Jill & Shane

Well we are back at our old hangout. I'm beginning to think that Ally likes duPont better than being at home. At the rate we are going we may need to think about moving to Delaware.

Ally started with a fever yesterday morning. I put a call in to transplant and they said we would have to bring her down to the ER. Than in the afternoon she was admitted to the PICU. She seems to be doing fantastic and is very pleasant. I wasn't too happy that we had to stay. Basically they took a blood culture and a urine culture and have started IV antibiotics. This all could be done at home so that is why I feel so frustrated.

They said if her cultures are negative at 24hours they may let us go home, but talk is that we are here for at least 48 hours. We will keep you guys posted but like I said Ally seems to be doing great. Her ultrasound on Monday had shown she had some blood flow through her hepatic artery. This is fantastic news and hopefully will mean that Ally will not have to be re-transplanted.

I'll update again tomorrow. Take care, Jill

Hi everyone, Ally is doing well at home and enjoying all the nice weather. So sorry there is so much time between updates but no news means good news and there is never any time to update!!

Ally had another check up at the hospital on Monday and Daddy got to take her to this one because Mommy was working. Ally was a good girl and her liver functions look great. This coming Monday she will go to the hospital for another check up plus an ultrasound so the docs can check on the blood flow to the liver.

She has been busy pulling out her ND tube at least once a week. Her nurse and I have gotten good at replacing it but it is definitely no fun for Ally. Shane and I are discussing when we will schedule Ally's surgery to have a gastrostomy ( a feeding tube inserted directly into the stomach) plus she also needs to have a bronchoscope so we plan on combining these procedures into one hospital stay.

Ally is doing great off her ventilator and is now off for about three hours in the morning and about three hours in the evening. Basically she is only on the vent when she is sleeping or napping. Her therapies are starting up again at home and we are hoping to see her progress rapidly. She is enjoying a new toy that requires her to do some weight bearing on her legs.

All in all things are going good and like before we are taking things one day at a time. Again thanks for all the support and prayers and remember to talk to your family about being an organ donor! Take care.
Jill

P.S. Ally's next beef and beer event is quickly approaching and Shane and I think we might even be able to attend it together! At the event they will be raffling off a chance to win a one week stay at the Windsor Palms Resort in Orlando, Florida, plus $400 toward airfare will be provided by Hunter HR Solutions and Affirmative Funding. Raffle tickets are $25 each. Tickets are available now at Bause's Super Drug Store or call Judy at 610-367-1543. You do not need to be present at the beef and beer to win the raffle.

Happy Mothers Day!!

Mommy, today is your special day. A day where you can rest, and enjoy myself and my sister Ashley. A day where you should be proud of all you have accomplished with raising such a strong family. Yes, times have been very tough this past year, but someday we will all be able to celebrate the hope and dreams you have given to me and Ashley.

Without you Mommy, I'm not sure I would have made it this far. You continue to be my strength, my voice, and my inspiration to getting better, and most of all, I'm proud to say your my MOMMY!

You truly are one special Mommy. You have proven it over and over again, that a mothers love is like no other. Without it we all would be lost.

So Happy Mother's Day to you and all the Mommys that show that special kind of love to their families.

LOVE ALWAYS. ALLY

This week has been a busy one. Well, not much different than any other really. Monday Ally went back to duPont for clinic. The results for her liver functions showed to be a bit lower. Even though the numbers were only slightly lower, it sure beats them being a bit higher, so will take it.

Yesterday, turned out to be one of those days. At 4am Ally's nurse woke us up to say that Ally had a temperature of 101.6.
Needless to say we made a trip to the duPont emergency room Saturday morning. We spent about 7hrs. there, Ally had a catheter placed to get a urine sample, an x-ray to check her mid section, and blood drawn to check for a central line infection. At the end of the day, we found that Ally had a urinery tract infection. We upped one of her meds to help treat the infection, and then discharged to come back home. That was the first time we went to an emergency room, and actually were able to come back home.

Ally is back home, resting comfortably. Monday she will go back to duPont for clinic. We will update again later in the week.

Ally Friday's visit back to duPont yesterday, went OK.
They were able to get some blood back from her central line, but still had a difficult time. Ally's liver function levels were up slightly, but her bilirubin did not rise.

Ally returns back to duPont on Monday for more labs to test her liver.

I didn't put this news on before, because I thought speaking about it might jinx us, but a few weeks back, Ally had an ultrasound to see how her hepatic artery was doing, and they could see some blood flow around the clot. The clot was still there, but there was a chance Ally could keep this liver. The docs said they never seen this before, but if anyone could do it, Ally could. Also there were no injuries to her bile ducts. That was all great news, but did not mean we would not need to re-transplant Ally. The doctors could not give us a definite answer to which way this would all turn out. Another reason why I did not say anything. Dr. Dunn said we should know by June for sure whether or not she needs another liver. The way we will know is by going to clinic each week and seeing if her liver function levels rise. I guess the reason I'm telling you now, is since her levels went up, I know keeping this to ourselves was not what to do, it should be shared so Ally can continue to get all the prayers she can to help save this liver. Please continue to pray that Ally's liver survives this clot.

Some other Ally news: Thank you to everyone who turned out last Sunday to give the gift of life through blood donation. Even if you were rejected for certain reason, we still appreciate the effort to support others. Thank you to Carol from Miller-Keystone, for the continued success of collecting blood in Ally's honor. To date 132 people have donated blood in Ally's name.
Keep up the great work!

Ally had her first visit back to the hospital yesterday for clinic. They were going to test her liver functions, but an issue came about. Ally's central line in her chest that feeds her TPN, was not allowing the docs to draw blood from it. However, the line still allowed for it to be flushed and still was able to run the TPN in. This like all of Ally's past issues is a mystery.

So, today Jill and our nurse Julia are making another trip back to duPont. We will update again with what today's outcome is.

Ally's next fundraising event:

Boyertown Ambucs Fitness Week, 4/23-4/30:
Location: Daniel B. Boyer Center
For ages: na

Work out at the Boyertown Area YMCA Daniel B. Boyer or Hendricks Family Centers, raise money, feel great about yourself while helping others, and possibly receive a prize.

Anyone who wants to participate in the Ambucs Fitness Week gets a one-week free membership pass to work out at either the Daniel B. Boyer Center or the Hendricks Family Center for the entire week and then be part of the celebration on Saturday, April 30.

Pick up a sponsor sheet and a one-week Ambucs
pass at one of the Boyertown Area YMCA facilities -
The Daniel B. Boyer Center at 301 W. Spring Street, Boyertown
The Gilbertsville Center, 144 Holly Road, Gilbertsville
or The Hendricks Family Center, 3065 N. Charlotte Street, Gilbertsville.

Can’t join us? Just mail your tax deductible contribution to: Boyertown Ambucs, PO Box 302, Boyertown, PA 19512, with checks payable to ‘Boyertown AMBUCS.

The recipient of this year's Ambucs event is Ally. For more information call Kim Slonaker at 610-369-9622, ext. 225.

Ally finally was able to come home today. The day however was not easy at getting her discharged. We thought for sure she was not going to be able to make it home.

Ally had come down with a 102 degree temperature Saturday, and since you usually need 48hrs for a culture, we had to wait until later this afternoon to see if that would be negative. Transplant also was a bit leary at letting us go, being that Ally's NG drainage, and urine output were not quite stablized. They thought she might be a bit dry. So, before we were able to leave they ran a half hour bolus of saline fluid to "juice her up".

Ally will return to clinic Thursday for her weekly tests, and then twice a week .

So as of right now, Ally is resting comfortably, sleeping back in her own bed. The night was made much easier, by having our wonderful day nurse Julia, available to settle us back into home.
Also tonight, we started the process of meeting our first new night nurse, and getting her settled in to take care of Ally.

Thanks to everyone today and the past few weeks who helped making coming home possible!! A big thank you to Johanna for all her great work at settling the staffing and discharge issues we have had the past few weeks. Without her, we truly would not have been able to make it home. Thanks Johanna!!!

Check out the photos from today, and we will update again soon to let you know more of how things are.

Shane

No news usually means good things are happening.
Ally remains to be very happy, and we are working on getting everything ready for her big day home on Monday. Next week will take some time to adjust to being at home, but it sure will beat staying in Delaware all week.

I would go into how Ally's liver is doing, but everytime I mention good things, bad things happen. So, it is still premature to what is happening, but I can tell you this...someone is listening to your prayers, so keep sending them Ally's way. I will fill eveyone in on more detail when this are certain.

Anyway, not much to report on right now, but hopefully soon we will be home.

Also tonight if you have time, check out the Discovery Health channel, our friend John Maicher (his link is on our site)is going to be on the program. The show is scheduled for 8 and 11p.m.
The show is about the Gift of LIfe.


Take Care

Sorry for not updating until now, things have been very busy. Ally is doing much better. We are still on for coming home on the 18th.

Yesterday, we have made some vent changes, and Ally did 4 hrs on CPAP. Today she did 8hrs. Maybe this week we can try her on an HME. All this is the process of weening her from her ventilator. It would be great to finally get her off it.

Ally is also up to 18cc of formula per hour, and that is doing OK. She right now has a very soar bottom, due to her short gut, not able to absorb quickly enough.

Besides all that, things have been crazy. Lots of running around and keeping up with Ashley. This week looks to be no different.

Before I go, this week is Ally's blood drive. Please consider donating, you could save someone's life by doing this.
Sunday, April 17th - Contact Miller-Keystone at 1-800-486-2566 to sign up.

Also another event that is being done in Ally's honor will be held the same day as her Beef & Beer event on June 11th (the beef and beer is from 6pm to 11pm the other event will be taking place during the daytime.)

Galeotti Family Chiropractic Center Presents Family Day'05 on Saturday, June 11th from 11am-4pm. You are invited to a fun filled day for your entire family. This year's event will benefit the "Ally Heintz Recovery Fund".

The planned highlights are Dora the Explorer, Simba, SpongeBob, Free Bounce ride, Free water slide, Pipper the Clown, D.J'Ernie, Fodd & Bevarages (Pig Roast), Crafts & Games, Free Spinal exams, Free Chair Massage, Face Paiting and More. Place; 1003 Egypt Rd., Oaks. Take Oaks exit off Rt.422 and head 1.3 miles down Egypt Rd. towards Phoenixvill. We're on the left on thecorner of Egypt & Longford Rd. Look for the signs.

Phone:610-935-3066. Free Admision, Donations will be accepted for the Ally Heintz Recovery Fund.

Ally finally was awake today. Not much herself, but did manage to give a few smiles to let us know she was Ok. The docs say we are now focusing on getting her home, and will continue on working on feeding, physical, occupational, and speech therapy.
Ally has been listed on the transplant list, but since her liver levels are still so good, her score came back today at -1. No not even a zero, a negative number. I didn't think you could even score negatives. So it looks like we will be in for some waiting time now. As you may know, the higher your score the more likely the chance of getting a liver. 40 is the highest. Long ways to go from -1. So it could be months to years before we get a liver, it will all depend on her health.

The transplant team would like for Ally to go awhile before having another transplant, this would give her a better chance at surviving the surgery. So, maybe before she turns 2, we could hope for a liver. Also by that time Ally maybe off the vent, feeding, and who knows, walking or even talking. Of course all this will take alot of work.

Some good news today, is we have a discharge date to work towards. We are hoping to bring Ally home on the 18th of April.
Cross your fingers and pray, that we can make this happen before all our nurses run off and find other jobs.

Enjoy the easter photos. Trust me these are much better than the current Ally photos. The poor girl is so puffy and swollen from not moving the last 5 days, but she is improving.

Shane

Well so much for the clot busting TPA medicine. This morning when the sheath was pulled an ultrasound was performed and it showed no blood flow through the hepatic artery. Ally has developed some collateral blood flow and the portal vein also supplies some blood to the liver. Unfortunately this will not be enough and eventually Ally will need to be re-transplanted.

As of now Ally's liver enzymes have come down from the jump they had taken last week. However, the enzyme levels are still not within normal range. The doctors expect the enzymes to rise but they are not sure how long that will take. So, in the meantime Ally will be put back on the waiting list for a new liver. Once again she will remain on the list unless she gets too sick and cannot wait any longer and than the docs would use Shane's liver.

The hope is that Ally can maintain her liver levels for a few months and that we can get her home within the next few weeks, like we had planned. We are extremely dissappointed that the clot could not be broken up but at this point there is nothing else that can be done.

It doesn't seem fair that Ally has to be put through all of this but this is the way it is. Now we need to focus on getting her well enough to come home and well enough for re-transplantation. We are discouraged by this latest news but we will never give up hope that eventually Ally will have the opportunity to live a normal healthy life. Please don't give up hope on Ally and please keep her in your prayers.

Things changed Saturday night which lead to more issues. One of the issues Saturday night was that Ally's right leg was not getting blood, and was stone cold. This was thought to be from the catheter inserted in her thigh that went up into her liver to distribute the clot busting TPA. The catheter stopped blood flow to the leg because the diameter of the catheter was the same size as the artery in her leg, acting as a plug. The docs were very concerned about her leg, and used a doppler to listen for a pulse and of course could not find any. So, instead of pulling the entire catheter out, and loosing the chance at continuing the TPA, the docs let just the sheath of the catheter in and said they would evaluate the leg for 4 hours, then discuss whether or not we could leave the sheath, and continue running TPA over night.
Things improved through Saturday night, and Sunday we were able to go to Christiana again to see if the blood clot resolved.

The docs worked for about 3.5 hours this morning, and during that time used a tool that acted as a jet cleaner to bust up the remaing blood clot that still was existing in the hepatic artery.
They said that they had good blood flow now to the liver, and that working so much in the vein, did cause some injury to the area, just from the amount of time spent in their cleaning. This however should heal. They also decided to leave the catheter in until tomorrow morning, still running some TPA, and blood thinners to see if this will help resolve anything from reoccuring.
All of this is really pushing limits to how long this can be done to a person without risk, but they feel Ally is so strong, that she can tolerate one more day.

Tomorrow, we will remove the catheter, and then also stop TPA. Ally will remain on blood thinners for the next 3 months. We will not know if any permanent damage has been done for at least 6 weeks. The concern is the her bile ducts could have sustained injury, which would then result in her needing another liver. So we are far from being out of trouble yet. All we can do is pray for the artery to heal, clots to stay away, and that the bile ducts are OK.

If Ally would need another transplant, I have now passed all my tests including the final one (CT Scan) so I would be able to donate to her. This of course would be our last hope at saving Ally.

We will update tomorrow to let you know how Ally is doing.

Shane

Ally made yet another trip to the OR this morning to Christiana hospital. The procedure lasted maybe a half hour or so. Dr. Dunn then gave us the update that as of right now, there is better blood flow then from yesterday, and it seems that the TPA is doing its job.

The best way to describe what is happening is if you can imagine a blocked pipe, the catheter was first inserted at the end of the pipe, and is slowly being moved backwards to the other side, and as then pull back the clot is resolving. We just need to finish clearing the rest of the vein out so that there is no more clot.

So the catheter will stay in place today, Ally will remain sedated all day, and we will be taken another early morning trip back to Christiana on Sunday morning to see if we have made any more progress over the next 24 hrs.

We need this to be resolved by tomorrow, because running TPA for more than 3 days is dangerous, and could lead to bleeding. Dr. Dunn seems optimistic, and feels this is our best shot at saving Ally. He said there is no way of knowing what to expect, because we are now in uncharted waters. It figures that Ally would want to be the first at attemping this feat here at duPont.

We will update again today if anything changes, or by tomorrow after her visit to the OR. Please, please, keep your thoughts and prayers with Ally today and tomorrow. I know she hears them, and is working hard at getting through all of this to get home to be with her sister.

Shane

After a long morning Ally's procedure finally got under way around 11:30 a.m. Shane and I both went to Christiana with Ally but Shane had to leave before the procedure was over because he was scheduled for a CT scan at duPont. This way if Ally would need to be re-transplanted Shane has completed all of his testing process for living donation.

Around 1:45 the doctor came to get me and to take me into Ally. He said that after several attempts he was able to reach the clot and the catheter was in place and infusing the medicine(TPA) to dissolve the clot. The catheter has been left in and tomorrow we will head back to Christiana so that they can check the catheter and see if the blood flow through the hepatic artery and to the liver has been re-established. The procedure took longer than anticipated but thankfully they could access the artery.

Tomorrow they will decide if the catheter needs to remain for another day or so or if they can pull it. If blood flow looks good they will pull it. If blood flow hasn't improved they may leave it in place and give the medicine(TPA)more time to dissolve the clot or they may opt to pull it and try to remove the clot surgically.

Right now the docs are keeping Ally sedated and paralyzed so that she does not dislodge the catheter. Tomorrow we go to Christiana around 8:00 a.m. We will try to update the site sometime in the afternoon. Thank you for all the extra prayers today.
Jill

Today was yet another one of those days we have become to familiar with. We learned today why Ally has not been feeling so well the last couple of days. It turns out that she has a blood clot in her hepatic vein which is one of the main arteries of the liver.

Ally will be transported tomorrow at 9am to Christiana hospital for surgery that will start at 10am to hopefully remove the clot from the vein. Dr. Dunn will perform the operation in radiology to see if he can save Ally's liver. Ally then will be transported back to duPont to recover.

The worse case scenario is that the clot can not be removed, which then means Ally would need another liver within a couple of days to survive. So, I may become her donor on Monday, if I pass the CT scan which I have yet to take. Again, this is worse case, please pray for Dr. Dunn to remove this clot, and for Ally to have no permanent damage to the liver due to the clot.

We will update tomorrow night after everything settles down.

To any of Ally's nurses reading this, please know we are sorry if we can't make it home by the 11th. In fact it could be longer. We should know more by end of day Friday.

Shane

Well good news has finally arrived! Ally now has every night and day covered with nursing. This is actually better than when we entered the hospital two months ago. The bad news is the coverage does not start until April 11th. Which means we have this week and next to continue staying at the hospital. But I guess one more week won't kill us, since we have been in the hospital last 12 of 13 months.

Some more good news is that Ally has been for the last week, weening from the vent. Right now we have been reducing her settings on the vent. Later on after we are home, we will start to sprint her from the vent.

Sorry for the delay in Easter pictures, but I will not be able to post them until Thursday or Friday night, once I come home.

Also, remember the Beef and Beer tickets are still available, and selling quickly if you would like to join us. Raffle tickets for the trip to Florida that will be given away are also available. Please call Luann at 610-367-0363 or Judy at 610-367-1543 for all ticket sales.

Thanks again for everyone's continued support and prayers.

Not much news to report on today. We are still looking to fill our night nursing positions so Ally can come home.

One good note from today is that GI has completely eliminated all of the amino acids and minerals from Ally's TPN fluid. These are some of the things that have been know to cause liver failure. Which of course they did to Ally. So getting rid of them is one step closer to finally coming off TPN forever!

Later this week, we may try some more feeding changes to Ally's diet, for instance changing the strength of the formula from 3/4 strength to full strength. This would give her 10 more calories per cc. Currently she is getting 24cc an hour. Little by little I think we're going to get there. Keep Praying.

Shane