Ally Heintz

I hope everyone had a wonderful Labor Day weekend. It was beautiful in Pittsburgh and we were busy, busy, busy!!! Ashley had fun showing her cousins around the city and generally just enjoyed having someone to play with. Today we got a visit from Ashley's Sunday School teacher from home who has started college at Duquesne a couple of weeks ago. Also my Aunt Shelley and Uncle George stopped in on their way back from Warren, PA (near Erie). So it was nice to see some familiar faces.

Ashley and I also had a chance to visit with two other families. The one family is currently leaving in Pittsburgh while their daughter waits for a bowel transplant. They are here from New Zealand and have four children ages 16 to 3. (Just when you think we had it bad). Matisse is six years old and they have been living here since January when Matisse was evaluated for her transplant. Matisse and Ashley managed to sneak in a couple of games of Go Fish and catch up on the latest High School Musical gossip.

This evening Ashley and I headed out to meet one of her new classmates. I had met his parents last week at Ashley's school's open house and they called to invite us over for a cookout. Ashley had a wonderful time playing with their son Jack and she will feel better having a familiar face at school. It was so nice to sit back and relax a little and comforting to know that we have made yet another friend in Pittsburgh.

On to Ally who has also had a busy weekend. Ally is still having some sedation issues. Which means she is spending a lot of time being agitated. She has longer periods of being awake but is generally withdrawn and unhappy, which of course is difficult for us to watch. On the positive side she seems to be more restful when she is sleeping. Her vent settings have been up and down with very little progress since last Monday. I have noticed that the breaths she is taking on her own seem stronger than what they were last week. However, when she is asleep she hardly takes any breaths on her own and lets the ventilator do most of the work. It is difficult to find a balance where she is sedated enough that she is comfortable but not sedated too much that she can not take breaths on her own. One of the many things I have learned since Ally was born is that an ICU stay is all about finding the right balance.

The newest thing we are having trouble balancing is Ally's Prograf levels (rejection med). Since Ally is being treated for rejection the docs like to keep her Prograf levels high. Needless to say Saturday morning they were through the roof. Her Sat p.m. dose was held and yesterday morning she had a nice level. Her meds were restarted but this mornings level was the lowest it has been since she was transplanted. A low level makes it even more difficult to fight the rejection, so we are still trying to find her right dosing schedule.

Ally had a scope done this morning and rapid biopsies were taken. Tonight I spoke with Dr. Sindhi and he said out of the three biopsies two looked unchanged since last week and the third looked slightly improved. He thought we should continue on the OKT3 rejection med and definitley work on getting her Prograf levels back up. He wants Ally scoped again on Wednesday.

Ally has still been having bleeding from her bowel. The docs were not overly alarmed by this and actually were surprised that it had not begun sooner with this latest round of rejection. She did have some more significant bleeding last night so she required yet another blood transfusion ( a reminder to everyone to donate blood if you can!)

Well that about sums up the weekend, I guess this is why I shouldn't take a break from updating because then the updates get too long! This week will be busy too (aren't they all). My Mom and my girlfriend Katie are coming to visit tomorrow so that will be nice. Ashley has a visitation day at school tomorrow for just an hour and then has her first day on Thursday. If you ask Ashley about her school all she ever says is that the only days she has off are Saturday and Sunday (which is exactly why I picked that school!). Anyhow I can't tell if she is excited by this or dissappointed so I guess I'll find out soon enough.

Before I forget I want to thank Lynne and all of her colleagues at Burns, White, & Hickton for participating in a dress down day in honor of Ally. The money raised will go to Ally's recovery fund and of course will be a huge help to us while we are living in Pittsburgh. If I had the time I could spend the rest of my life writing thank you notes to all the people that have helped us over the past three and a half years and I still would not be able to complete the task. Thank you to everyone who has supported us in any way, we are forever grateful.

Take care,
Jill

As usual it has been a busy couple of days. Shane arrived late last night and my brother and his family, Ashley, and my parents all arrived this afternoon. It is great to see Josh and Kelly and the kids. Ashley was exhausted today but I think tomorrow she will enjoy showing Katie and Luke around Pittsburgh.

Ally's last two days have been okay but not great. She has been up and down on her vent settings. Currently her vent settings are higher then what they were on Wednesday. She will have another scope done on Monday. The docs said there was no reason to do one today becaue they will be leaving her on the rejection regimen until Monday.

Today Ally was awake for a while and was very excited when watching Barney on the DVD. She was mouthing the words and pointing with her finger. It was nice to see her so happy.

I probably will not update until Sunday unless there is something to report.

Jill

Today was an okay day for Ally. It was actually very uneventful so I guess that is good but it also meant no weaning from the vent. The plan this morning was to wean but then her noon and late afternoon blood gases were not so great so the docs kept her settings the same.

Ally's biopsy from Tuesday clearly shows some rejection so her docs will be keeping her on the OKT3 till Monday. Another biopsy will be done on Friday but Dr. Kyle said it will probably be unchanged from the one that was done yesterday. Ally spent a lot of time sleeping today. I am thinking she doesn't feel that great because of the rejection. Although, I guess it could be from the open abdomen, or the broken down skin around her stoma, or the stitches that have been in for 5 weeks, or the amount of medications she is on or possible the breathing tube, NG tube, J tube, and two JP drains. Put it this way she has the right to feel however she wants to feel! She also had some low grade temps today which is probably from the rejection.

On a good note Ally seemed less agitated today and was very happy to watch some movies on her DVD player. I got a chance to go to parents night at Ashley's new school. I even met another mom and got to talking with her for a while. She has a son starting school with Ashley and he and Ashley have the same birthday. She asked about getting the kids together for a play date sometime over the weekend or next week so that they both would know someone when they start school.

I managed to fit the Pirates game into my busy schedule. Lynne was right when she told me they stink. It was a very boring game but Lynne, Amy and Jamie kept me entertained so it was a fun night. Thanks again Lynne.

I am hoping Ally has a day of progress tomorrow and that she can do some weaning on her vent.

Take care,
Jill

Another good day for Ally. She has been able to stay off of the dialysis circuit and has had good urine output. She looks good and is definitely back to her pre-transplant size. The docs were also able to do some more weaning on the vent and I am hoping she could be extubated by the end of the week.

Unfortunately Ally's biopsy show more rejection so she is getting some stronger doses of therapy (OKT3). Dr. Kyle thinks this will take care of it so we will see. This med has the potential to cause very adverse reactions but Ally seemed to handle her first dose just fine (prior to giving it the premedicate with benadryl, tylenol, and methylprednisone). Ally had to have her scope repeated today and they actually opted for an endoscopy so they could get a better look. More biopsies were taken but they will look about the same as the biopsies taken yesterday considering the rejection therapy was just started this afternoon.

I'll try to update sometime tomorrow. I am headed out to a Pirates game with Lynne and a couple of her friends so it should be a nice night. Prior to that I have to go to Ashley's school for parents night.

Take care,
Jill

Ally had another good day today. She did have to go back on the CVVH dialysis machine for another 12 hours but was taken back off again tonight. This was really not a set back it was more just that she was not quite ready to come off yesterday. She has had good urine output all day even while on the dialysis circuit.

Ally also has been able to wean some more from the vent. She is now back down to a peep of 5 and her breath rate is at 14bpm. She had another scope down this morning so we should find out those results tomorrow. Her belly looks okay she has a fairly large area in the center of her abdomen that is open. The docs are using a wound matrix to help Ally form granulation tissue. I told her before she went to bed to think "pee" and "granulation tissue". I'll see if she listens!

Ally was awake a lot today. I still don't know if this is a good or bad thing. She seems so withdrawn and really wants nothing to do with me so it is hard to see her like that. I guess Shane and I always worry that she will end up hating us for all that we have put her through, but then it is not like we had a choice. I just pray that someday she understands the decisions we have made for her.

I got a chance to meet another mom today who has a child in the PICU. Her son had a multi-visceral transplant on August 4th. He has had a lot of set backs similar to Ally since having his transplant so we had a lot of things to talk about. She is also here alone this week so it was nice to have some one for company.

I also had a chance to go visit a preschool/kindergarten program for Ashley. The program is run by Carnegie Mellon University and seems like a great program. I got a call back from them later in the day saying that they would be happy to have Ashley in their program. They are having a parents meeting Wednesday so I will attend that and then make my final decisions. The program is Mon-Thurs 8:30-2:30 so it takes up a big chunk of time for Ashley and will give me some alone time with Ally. Friday is a shorter day just 8:30-11:30 and usually involves a special activity. Hopefully she will love it and will make her feel more at home out here in Pbugh.

Jill

Ally is holding her own in the pee department tongiht. The circuit for the CVVH dialysis machine needed to be changed and since Ally has been making urine the past two days the docs decided to see what she can do. So once again pray for pee.

Ally was awake on and off today and answering yes and no questions for us. Her vent settings have been weaned over the last three days and she is taking some breaths on her own. Her stoma site has had some bleeding so she did receive some blood and platelets to help stop the bleeding. Dr. Mazerigos looked at her stoma and said it looked okay and tomorrow we will get another look at her abdomen.

We had a nice visit from Dr. Rabb today. Dr. Rabb was one of Ally's main docs back at duPont and was in town for a wedding. It is always nice to see familiar faces. Ally even managed to pop her eyes open for a few seconds while he was visiting.

Everyone else headed home this afternoon including Ashley. It was another tearful goodbye but she didn't seem quite as hysterical as the she did the previous weeks. I am planning to look at some schools tomorrow and Tuesday and then make a final decision about were she will be going. Next week when she starts school will be busy but it will be good for her to have the interaction with other children. I think seeing kids her own age is what she misses the most.

Hope everyone is doing well and enjoys this last week of summer. I'll update sometime tomorrow.

Jill

Another day of progress. Ally is still doing well on the circuit and they are pulling off about 25cc and hour. The docs are hesitant to push Ally further since she is doing well at this and slow and steady seems to work well for her. Since getting some of the fluid off and not being septic the docs have been able to decrease her vent settings. SInce she is being kept paralyzed (due to her open abdomen) they will probably not be able to decrease her settings too much more. The biggest problem we are facing right now is keeping Ally comfortable and sedated. The circuit pulls off a lot of her medication so everything has been increased to extremely high doses and some addtional meds have been added.

I told Ally to keep being good girl and I think she is doing just that!

Jill

Quick update because I want to get back to the hospital (we can not access Ally's site there because it is blocked). Ally is doing so so. Her vent settings have remained the same for the past two days which is good. Unfortunately her urine had dropped off to pretty much nothing.

Late yesterday afternoon Ally had a dialysis catheter place and was started on a CVVH dialysis circuit late last night. She did well transitioning to the circuit and when she had the dialysis catheter placed. When I saw how much Ally's urine had decreased I asked her docs about the circuit and they said they were planning to talk to me about it because they wanted to be very proactive and get things started before they got too bad.

On a positive note her docs said her belly looked good. One of the infectious disease docs (thank you Dr. Green) was nice enough to look at Ashley's ears which were definitely infected. She has started on some Augmentin (which she spit out all over me last night). She is definitely feeling better this morning.

We'll try to update sometime this afternoon.

Jill

Another quick update because it is after 1a.m. and I am beyond exhausted. But before I update I have a lot of people to thank. Thank you to Lynne for spending some time with Ashley so I could visit with Ally and also thank you Lynne for being my family and support system while I am out here in Pittsburgh, truly my words could never express how much your help has meant to me. Also thank you to my Uncle Wally (who was out here on some business). Having a familiar face at the hospital has helped to give me the strength I've needed these past few days. Finally a huge thank you to Jeanne and her family (especially Mandee) Jeanne you have been their for Ally since day one and without your guidance and support I would be lost.

On to my Ally update. Ally now has an open abdomen again. The docs had to remove a portion of Ally's new bowel because it was so inflammed and they also had to remove some more of her colon. She has a new ostomy and her colon is no longer connected to her bowel (before her ostomy and bowel was done in a "Y" pattern so her colon had been connected to the small bowel). Her abdominal cavity was quite frankly a "mess". She was already full of adhesions and her abdomen was also full of intestinal fluid (basically stool).

The docs will be keeping her paralyzed for the next couple of days. Her biopsy from Monday looked good (Thank God!) so they can hold off on doing a scope tomorrow. Her vent settings are fairly high and she is having pretty poor blood gases so I don't expect her settings to improve anytime soon. She is also very positive as far as her fluid goes and her urine output has dropped off considerably (better start that pee pee dance again). She has been maintaing her blood pressure (with the help of some hydrocortisone) and her hear rate has improved since yesterday. Infectious disease is very concerned because Ally has grown a very resistant bacteria from her abdomen so they will be following her closely.

As usual if one thing wasn't enough. Mandee had to call me at the hospital tonight and ask me to come back to the apartment, Ashley was hysterical and I think I figured out why she has slept so restless the last couple of nights. Needless to say I am pretty sure she has an ear infection. I will have to add a doctor's visit to my list of things to do tomorrow.

Please say prayers for both of my girls. Pray for Ally's kidney function and that her body to rid itself of this resistant infection. Also pray that her bowel can go on to function normally and be healthy. Pray for Ashley's patience and strength not to mention her hurting ear. Also pray for my sanity ( or maybe just some wine!)

I'll update tomorrow when I get a chance. Ashley was up to close to midnight so I am sure I will have to bring her back for a nap and then maybe I will have a chance to update in the afternoon.

Take care,
Jill

Just a quick update to let you all know that Ally has finally made it out of the OR. She was in for almost five hours. Her surgeon said he thinks everything went well as far as the surgery goes but Ally is having some problems with her vital signs. Thankfully Lynne is coming to stay with Ashley for a little and I can have a few hours at the hospital to help get Ally settled and talk to the docs. (Thank you Lynne!)

I'll update later tonight with all the details.

Jill

I honestly don't know how much more bad news we can take in a week, but things are just getting worse for Ally!

I talked with Jill tonight, and Ally will be heading back into the OR again for the second time this week because she is leaking stool into her abdominal area. The catheter that was placed yesterday is not working, so back in the surgeons will go to either repair the area in need between the small and large bowel, or possibly create yet another ostomy (colon), along with her lleostomy. How many bags does one girl need?

I wish I could explain and have you understand just how difficult days like these are when nothing goes right. To watch Ally fight every day just to live....only to have all hell fall upon her when she makes the smallest amount of progress. I guess you could say my frustration level is at its greatest right now. All I want is for her to heal. If you were to see the wounds she has currently, the poor girl looks like she has gone through war and back again!

I know I guess I should remind myself yet again to be positive, but for some reason after 3.5 years of telling myself to do so, you start losing the strength to keep a healthy mental status. Don't worry, we don't give up, failure has never played a role in my book, and as long as Ally continues, then so will we. Guess venting on the website may not be the best place, but hey I do have an audience, right? ;) Well, our lives have been an open book for everyone to read, so I guess I do have some right here. If you haven't noticed, I'm frustrated. Having to be on the other side of the state, not able to be with Jill, Ashley, and Ally also makes things that much more difficult. I should be able to do more, and can't.

Enough rants, please pray extra hard for Ally tonight into tomorrow. Also, please pray for strength for Jill to handle both Ashley and Ally, while I am not there to help in Pittsburgh.

P.S.
Thank you to Maura G. and Densie T. from Vanguard for stopping by the hospital this past weekend to visit with Ally and us. In case everyone does not know, much of what we have accomplished so far with Ally could not have been done so gracefully, if not for the overwhelming care, support, flexibility, and friendship that all of my fellow crew at Vanguard have given to our family. Your support, continues to amaze both Jill and I, and I want to make it a point to thank you as much as possible!

Shane

Sorry for the delay in updating things have just been busy. Ally is doing okay. She spent about 3 hours in the OR last night and of course things turned out to be a little bit more involved then what the docs first thought.

Ally had been having some bleeding from the bottom part of her incision since Thursday. By Friday the bleeding had stopped until yesterday late afternoon when the bleeding really picked up again. The bleeding appeared to be old blood and we thought it was probably a hematoma just under the skin. Unfortunately by last night her incision had opened up about a half of an inch and Ally's abdomen seemed to be getting bigger and was definitely very tender for her.

During the trip to the OR the docs drained the hematoma and placed a drain in that area in case it fills up again. They also repaired an area around her ileostomy that had broken down and was separating. The surgeon then noticed that the area where the small bowel was connected to the colon was leaking but he decided it would be too damaging to repair this area by sutures and thought it best to place a catheter for the time being so that this could drain easily and not have fluid and stool collect in her abdomen.

She will need to remain paralyzed for the next few days until things start to heal up some. The docs also took out the allograft that was covering Ally's abdomen and closed her completely. Unfotunately since she is paralyzed all of her vent settings have been increased along with her narcotics and sedation meds. The docs are using the paralytic that does not have to be metabolized by the kidneys or liver so that should help.

On top of all of this Ally had a fever this afternoon and all of her cultures were repeated. She had a very high heart rate all day and we are not sure if this may be because she is septic, a little on the dry side, or just not sedated enough. She also had a scope and biopsies down of her bowel. The scope looked good but so did the scopes that were done last week. The biopsies will come back sometime tomorrow.

I'll update again later tomorrow evening.

Jill

Yet another tough weekend. Ally has had her ups and downs this weekend, but last night at 1 a.m. put a nice finishing touch. I can tell you that when the phone rings at that time, you know its not good. It seems Ally's horizontal incision line has come apart at both ends, and she needs to go back to the OR this morning. The kid can never get a break, I really don't know why she has to be made to go through so much? As soon as we find out more on this we will let you know.

As far as the rest of the weekend, both Ashley and I came down with some pretty nasty colds. I'm sure it's because we are so exhausted and were vulerable to getting sick. Just another thing to deal with I guess.

Other Ally news, the cultures that were drawn the other day, all came back negative. As for the rejection, we will find out today after her scope test. Some good news, Ally has been doing some sprints on the vent, and is handling it well. If you would of asked me before 1 a.m. this morning, I would of told you I would think she would of been off the vent by end of week, but now that she is going back to the OR, that means more sedation meds being pumped into her body. As I said, she nevers gets a break, she always gets into a viscious cycle of things.

Please keep Ally in your prayers, as she will have another tough day ahead of her. Thanks, Shane

Ally has been having a mixed few days of good and bad. I'll start with trying to be positive...Ally continues to be much more awake and answering questions when asked, she enjoys listening to her music, and even had the chance to see some of High School Musical 2 last night!!

Now for some things Ally could use your help with through prayer! Top of the list is Ally's new bowel is going through some rejection episodes, in fact it has gotten worse over the last few days. They increased her anti-rejection meds in the hopes that this will help. Ally also ran a really high fever yesterday morning, so a ton of different cultures have been run to see what that is about. On top of all of this, Ally is battling withdrawal from her medications. It's been hard to stand by her bedside lately and watch her have to fight so hard to live! I know we said this in the past, but everytime we as parents have to go through this with Ally, the more difficult it gets not being able to do anything to ease the pain and suffering. I guess that's why we turn to everyone here, through all your support, thoughts, and prayers, God hears and is listening to just how much Ally means to us. It also helps to know we continue to do all of this not on our own.

Please pray for Ally, and that she can overcome this rejection episode! We will update again soon when we know more about the next set of results.

Shane

Just a quick update to let you all know that Ally had another good day yesterday. The EMG test that was going to be done today was put on hold since Ally has been so active the past few days. Yesterday she even had to wear no-nos. Which means Ally was very busy checking out all her tubes and wires! I also got to read her some books and she got a chance to listen to some of her favorite music. I told her she could watch Mickey Mouse this morning so I gotta get going:)

Jill

Well yesterday might have been a mixed bag but today was a bag full of goodies!!! Ally had a wonderful day and I got what I was praying for, Ally was finally able to open her eyes:) I am so proud of her and all the hard work she has been doing to keep strong.

The neurologist had been in and does have Ally scheduled for an EMG test to be done on Thursday. However when she was talking to me about this was when Ally decided to open her eyes and start moving all around. I think she was letting her know this test would not be necessary. The doc said that if things continue to improve over the next day or two then they probably not bother with the study.

The critical care team was impressed with Ally's progress over the past two days. Her blood gases were good last night and today and she was weaned to a rate of 8bpm and she is taking the rest on her own. Since she is moving around so much she is requiring a lot of suctioning but she is tolerating it well. Earlier tonight she was even trying to assist with suctioning, and emptying her ostomy bag, and listening with the stethoscope, and pulling every tube in sight! It is good to have our Ally back:)

Her feeds were started at 5cc an hour yesterday and then they were increased to 10cc an hour this morning. The plan is to increase by 5-10cc per day until we reach our goal (which would be about 50cc an hour). She had vomitted a little once today so they did stop her feeds for a little. She was also very agitated at the time and in need of some fentanyl (narcotics) plus she also needed to be suctioned. Since they have restarted her feeds she has been fine and is currently at 7cc an hour.

Thank you to everyone who has been praying for Ally especially for the prayers to re-gain her strength, they are obviously working. I ask you to pray for Ally's strength so that she is able to come off the vent and will not need a trach, pray for her feeds to progress well, pray for no rejection of her new organs, and please remember to pray for her donor's family. Also thank you to St. Andrew's congregation her in Pittsburgh, for your prayers and support and a big thanks to Pastor Grill (both of you!).

Hope tomorrow can be as wonderful as today was!
Jill

Today was still a bit of a mixed bag but I like to think that there was more good than bad. The most exciting news came tonight when Dr. Kyle stopped by and put Ally's order in to begin feeds!!! I was beginning to think everyone forgot about the feeds and that she would begin tomorrow. Of course I should have known better I don't think the transplant docs ever stop working here so I don't know why I was so surprised to see him tonight around 9:00.

A neurologist came to see Ally today and was pleasantly surprised to see Ally answering "yes" and "no" questions for us by nodding her head appropriately. She did not have her eyes open for us at all but did manage to wiggle her toes and move her finges. She has still not been able to move her extremities and has not opened her eyes. The neurologist said that upon hearing about Ally's condition (extremely high blood pressures, low platelet count, starting with renal failure, long exposure to a paralytic and high doses of steroids and immnuosuppression drugs and lack of movement for days) she was concerned for her neurological status. She was extremely pleased (as was I, not to mentioned relieved) to see Ally still seemed to be cognitivly intact. In closing the neurologist mentioned the EMG test that would help us to determine if Ally is suffering from critical care myopathy. She said she would talk to me more about this tomorrow after she assessed Ally again and talked things over with the critical care team.

Later in the day the docs made some changes in Ally's vent. Actually her therapist was playing around to see what she could do. She even turned off her rate and low and behold Ally began to take breaths on her own. They obviously weren't fantastic breaths but she was still able to do some work. Her rate was turned back on but her settings were changed some. When I left her tongiht she was still taking some breaths on her own. No mention of a trache was made today but I think Shane and I both realize that if Ally is suffering from critical care myopathy she will have a long recovery ahead of her and trache would then be in her best interest. As Shane said we will cross that bridge when we get to it.

So like I said I thought the day was filled with more good than bad. I did get to spend a lot of time talking with Ally even if it was just "yes" and "no" responses I was still ecstatic to interact with her. She made the neurologist laugh because she was asking Ally to wiggle her toes and Ally kept shaking her head "no". So then she asked Ally if she wanted them to stop and of course she shook her head "yes'. Thankfully during the time I spent talking to her today she did not become upset at all. When the neurologist first came by she would not answer any questions. When I asked her if she was scared she nodded "yes" and I tried to reassure her that it was okay and then she began to answer their questions. At another point she began to get all red in her face and was moving her tongue and drooling. Knowing how much Ally likes to talk I asked her if she was trying to talk and she nodded yes. Explaining what is going on is so difficult and all I can think is how will I explain to her that she has to have a trache again?

Oh well tomorrow is another day and I am praying for eye contact from Ally. Thanks again to everyone who helped at Corvettes for Kids and to all the people who came out to support our family. After three and a half years we are still in awe by all the wonderful people we have met along this journey.

Jill

Shane it is just now a half hour shy of our 8th wedding anniversary. I am so glad I have your love and support and would be lost without you (even when you are over 300 miles away). I love you.

Sorry for the delay. We had a very busy weekend. We finally settled into our apartment Friday and Ally had an stable day. She opened her eyes once, and even responded to a few yes, no questions by nodding her head.

We spent much of our Saturday with Ally, and then finishing our last few apartment leasing requirements. Ally on Saturday however, did not have as good of a day, as we would have liked. She did have a CT scan of her abdomen, and her bowel is doing great, and we may even start feeds tomorrow. That's the good news, now for the bumps in our road. You should of known these bumps were coming, there's never been an easy road for us, that is for sure.

Ally has been on the vent now two weeks, without much movement. Much of this is due to all of her sedation medications. We cut some last Thursday in half, and cut today, that amount in half again. The doctors feel like something neurologically could be causing her to be weak, and unable to fight the sedation. Bascially, she is not taking breaths on her own, and is too weak to do so, right now. There is talk about doing some muscle tests, which stick needles into her muscles to test for specific conditions. These tests are very painful, and JIll and I will need to make a decision on whether or not to do this in the next day.

Please pray that Ally's sedation meds that have been cut in half, will now allow her to find the strength to move and open her eyes, and maybe even take some breaths on her own.

If we do not get her off the vent soon, we may need to have a trache put back in until she is strong enough to breathe on her own. I know that sounds bad, and is disappointing to think about having the trache back, but if we need to take one step back to take two steps forward, then we will do so. We need Ally to make progress so that she can heal comfortably.

Enough trache talk, if it happens, we will cross that bridge when we get there.

As for the Kids for Corvette show....it was a huge success. Thank you to everyone who contributed time to helping with the event, and also everyone who found time to join us, to help Ally and our family with all of our extra expenses! The day was long, I left Pittsburgh this morning at 5 a.m. to make it to the event and to meet and greet as many of you as I could. It was important for Jill and I to ensure one of us could be there to help with any additional needs for the event. Ashley had a great time face painting, and awarding a trophy to her favorite corvette.

All in all, it has been a very busy couple of days, and we will work on now trying to get Ally strong, so that we do not hit anymore bumps along the way. Fasten your seatbelts...the ride is just begun ;)

Shane

Another good and stable day for Ally which was a good thing because Mommy (and Daddy too) had a chaotic day. I know Shane said the weather was bad at home but around 3:00 it was horrific in Pittsburgh. Not to mention at that exact time my mom Ashley and I were all outside under a tent a few blocks away from our hotel!

The day started off with a parking ticket. No big deal but I can hardly remember were I have left my car at the end of the day (hospital or hotel) needless to say last night I parked on the street in front of the hotel. Around 9:30 this morning I remembered that I was parked on the street and needed to put money in the metor, to bad I received a ticket at 9:00.

We finally arrived at the hospital around 10:30,after double parking in the parking garage (to say the hospital is short on parking is an understatement). Thankfully like I said things were good with Ally. Her vent settings were back up a little because she had some very poor blood gases during the night but her 8:00a.m. gas was good. Unfortunately Ally still has not been moving much and has not been awake at all since Tuesday morning. The docs decided to decrease her Fentanyl (narcotic) considerably which she tolerated well but, she was still not awake at all.

Around 1:00 Ashley and I left the hospital to head over to the apartment so I could sign my lease agreement. Unfortunatley when we arrived in the leasing office no one was around. The memory portion of my brain, which had apparently stopped working, suddenly kicked in and I remembered hearing the leasing manager say "just make sure you call in the morning and let us know when you are coming so that one of us is in the office." Oh well, I figured I would just come over later after all it is only a five minute drive (2 miles to be exact).

Back to Oakland and to meet my mom at the hospital. We thought it would be a good idea to walk and get some lunch and then Ashley and my mom could head back to the hotel. We ended up at Ashley's new favorite lunch spot Schenley Plaza. It is right in the middle of Pitt's campus and there is a huge tent to eat under and a carousel to ride on. Needless to say a horrible spot to be during a nightmare of a thunderstorm (mind you there was a funnel cloud spotted in the middle of downtown Pittsburgh)! Thankfully we made it out alive and without being struck by lightning.

Now back at the hotel (and soaking wet) I talk to the leasing office and they say come right over to sign the papers if I can because, the furninture company will not set up for delivery with out a copy of a signed lease. Okay, no problem after all it is only 5 minutes away. An hour and a half later I arrive in the leasing office, that's right and hour and a half to go 2 MILES!!! Plus I still need to get back!

Thankfully (I know I've used that word a lot) going back only took about 35 minutes. I did find myself in a pretty rough neighborhood during my shortcut back but fortunately (or thankfully) traffic was moving fast and there was a cop in front of me. Anyhow I finally arrived back at the hospital around 6:45 which left me with 15 minutes to see Ally before they kick us out for shift change.

I did make it back to the hospital after the shift change and Ally was still not awake at all. She was recieving some blood because once again her hemoglobin was fairly low (5.4). Her platelets have also been low (23,000) but they have lowered there threshold for transfusion and will hold out unless they go below 20,000. Her white count has been coming down and her urine output remains good. Tomorrow she will have the CT scan and if all looks good possibly start some feeds. She had her scope done today, which looked good and we will get the biopsy results from that tomorrow.

Shane and his mom finally made it out to Pittsburgh late tonight. They also had a horrible drive. They said it rained all but 10 minutes of their trip. Plus Shane lost his ticket for exiting the turnpike. I've decided we defintely need an easy pass and I don't mean for the turnpike but for life!!!

Hope everyone enjoyed this comical update!
Jill

Since Ashley will be back out here in Pittsburgh tonight I want her to have my full attention therefore I am updating early.

I don't have all that much to report. Ally has had a good day. Her urine output has increased without having to give her extra diuretics. Both her heart rate and blood pressures have been decent today. The docs weaned her vent a little but cannot wean it much more for today because she has not been moving anymore than yesterday and that was only trace movements.

Last night she lost her A-line so they had to place a new one and they gave her some paralytic to do this. Unfortunately, they gave her the same paralytic that she had before and that took so long to get out of her system. Needless to say she now has a large sign by her bed because the attending doc was not to happy that this paralytic was used on her again. She also had a critically low (4.3) hemoglobin last night and we are not exactly sure where all her blood went. She had received blood in the OR but obviously needed more. This was more than likely the reason she was so tachy yesterday evening.

The plan for the next couple of days is to decrease her sedation meds and wean the vent. She will receive another scope on Friday and more biopsies of her bowel (this is standard stuff her biopsies from Monday looked good). The transplant docs also want to get a CT scan on Friday to check the bowel and stomach and if all looks good they will possibly start a small amount of feeds.

So that is enough about Ally. I just want to say how wonderful everyone has been out here in Pittsburgh. The docs, nurses and staff at the hospital couldn't be any more compassionate and understanding then what they have been. Also we have had numerous people contact us, friends of friends or family of friends, and that has helped to make us feel so welcome. I especailly want to thank my dear friend Lynne and that is truly what I consider her to be my newest dear friend. Not only has she allowed me to stay with her the past few nights (although she didn't tell me how environmentally friendly she was NO AIR CONDITIONING:( She has been busy keeping me company and helped to keep my mind off of missing home and my family. The last week and a half would have been much more difficult to bear had it not been for her. Thank you Lynne.

Jill

Another so-so kind of day for Ally. On the plus side I got to see her eyes this morning and she was moving quite a bit. She also had another stable trip to the OR. Her blood gases have remained good for the past 24hours so they weaned some of her vent settings once she was back from the OR.

On the down side her white blood cell count is through the roof (indicator for infection) and her heart rate is right up there with that. Today her blood pressures were more normal to the low side and I am not sure if this is due to her blood pressure meds or because she is possibly getting sick.

The docs were not able to close Ally's abdomen completely, which is a little bit of a bummer but at the same time I certainly wouldn't want them to force her closed. The docs placed an allograft material over the small opening so she will not need another trip to the OR her tissure should begin to granulate and close this opening. The docs are also using a wound vacuum to help close this a little faster. Ally has never had one of these before but I have seem them used on other patients.

When I left the hospital tonight for the shift change Ally was starting to move again. The docs took my advie on using the other paralytic so hopefully tomorrow she will be little more awake and stable enough to wean some more vent settings.

The plan for tonight was to try and get her heart rate under control, the docs are giving her some extra fluid for this. She is still on diuretics because quite frankly her kidneys aren't functioning without them. Basically all of this means she needs more fluid to bring up her central venous pressure but her kidneys can't handle the work of the extra fluid. In a nutshell this all means that we desperately need Ally's kidney function to start to improve.

So I think that is enough info for now. We did get final approval today for our apartment so we can move in on Friday. Ashley and my mom are headed back out here to Pittsburgh tomorrow so I need to go rest up.

Jill

Sorry for the delay in updating but accessing Ally's website has been impossible. That being said a huge thanks to Lynne for letting me use her laptop and her home!

Ally's last two days have been okay. For the most part she has been stable. Her blood pressures have been on the high side so she was restarted on some of her high blood pressure meds. On and off her heart rate has been elevated (150-170 bpm) and we aren't sure if this is due to pain, aggitation, or possibly some infection process.

Ally had her first scope and biopsy done on her bowel today. I will find out the result of all of this tomorrow and then Ally will probably have another scope done later this week. She is also headed to the OR again tomorrow. The docs are hoping to close her abdomen but we will see. As for her vent settings they have been up and down. She will have a couple of good blood gases and the docs will change her vent settings but then she has a terrible blood gas and the settings go back to where they were or even worse.

As for Ally's kidneys she is still making urine but her kidney function could improve greatly. So needless to say keep the prayers coming!

Jill

Another day with not much to report. It feels great to write that, trust me! I would take a boring life from this day on if I could.

Ally was stable all day. When you talk with her, she tends to cry...by crying I mean tears start to pour from her eyes, she makes no sounds and can not move due to the sedation. It's so hard to see her this way, even though we have experienced it before. I can't imagine what it must be like to hear people speaking to you and not be able to communicate back.

Our apartment search is over. It came down to two different ones, and the one we liked most, just didn't have enough room for us and family when visiting. The one we choose is great, and is in a very nice neighborhood. We are preparing to move in by the end of this week, so we will have plenty to keep us busy again this week.

Ashley has been struggling this week learning to cope with the uprooting of our lives again. She's worried we are moving her forever. She missed home, and misses her sister very much. To be honest, she's flat our scared! It's so hard to balance this type of life, but with the help of others, I know we can do this once again.

Please think about attending next Sunday's Corvette for Kids event. It's the best way you can show your support!

We had a very busy day today. It started off seeing our friend Beverly from duPont, who was at our hotel helping transport some tranplant kids from back home to a camp just South of Pittsburgh in West Virginia. The scene in the lobby was overwhelming to see all these few hundred kids that have had transplants, excited about a weekend with friends to enjoy camp activities. I explained to Ashley that these kids were just like Ally, they all were given a second chance at life. I can only hope that one day Ally can join everyone at camp also!

A big thank you to Jessica and Beth back at duPont for the gifts from Child Life for both Ally and Ashley!! Too much of course, but brought many smiles to Ashley, and I'm sure Ally when she awakes!

Jill and I spent half the day looking at apartments, we have a few to consider, and will make a decision sometime tomorrow. We met some great people today, that had some fanastic places and accomadations offered to us. It's going to be a tough choice to say the least.

Besides our friends from duPont making a visit, we had another visitor, Don Razzano from Vanguard (My workplace and co-worker), stoped in at the hospital to see Ally and spend an hour with us visiting. His son was touring the university here, and when he saw how close Childrens was he knew he had to stop and see us. Visitors are always good, and always welcome!

As far as how is Ally. Well, not much has changed. She was had some issues with her blood pressures, and is just wanting to be awake. I think it's the fight in her that just wants out, and every time she trys they knock her back down with sedation meds. It's in her best interest, but hard to watch her fighting to be awake.

Not much else to write for now. It looks like the OR will happen on Tuesday to close the rest or her abdomen.

Keep your thoughts and prayers going for Ally, it is truly working. I wish you all could see everyday at just how much fight she has to live!!!

Shane

Today was another good day for Ally. I got a good look at her belly this morning when the wound care nurse did her dressing change. It looks fantastic! She and I both agreed that they should have no problem closing Ally's abdomen next week when she heads to the OR again.

Her vent settings were increased a little today do to some areas on her chest x-ray. Her paralyzing med is still off but Ally has not moved at all yet. On and off today she was a little aggitated when the nurses were messing with her but like I said in general it was a good day. Also thanks to all of you pee-pee dancers because Ally's urine output has been great. This of course is a huge relief we did not want to head back down the same road as a few months ago and have Ally back on a dialysis machine.

Shane and I have begun our search for apartments. We are going to look at some tomorrow so we'll see. We went to a nice area for dinner tonight and they have some furnished apartment complexes there so we will also be looking at those. Ashley seems to be doing well the last couple of days and she is excited about going home for a little this weekend with her grandparents.

Hopefully things will continue to move along at status quo. I told the attending doc in the ICU that I have been pleasantly bored!

Jill

Ally is out of the OR and things went well. The surgeon was able to reduce the mesh and open area of her abdomen by about 50%. She looks good and has been pretty stable.

When Ally first returned back from the OR she seemed fairly awake (for all you nurses her pupils were like saucers). She received some additonal boluses of fentanyl and even some morphine on top. Fortunately she was not crying. I can honestly say that for a parent one of the most difficult things to see is your child crying when they really seem as if they are "sleeping".

Her urine output has picked up a little but there is definitely still a lot of room for improvement! So keep saying those prayers and doing the pee-pee dance because it is working.

Jill

Ally had a better end of day. Blood pressure has been a little high, liver enzyemes have started to trend down, but still some work needs to be done with losing some fluid and having more urine output from those kidneys. Everyone do your pee-pee dance tonight!!

Ally is scheduled second on the OR list for tomorrow to have a partial closure of her abdomen. Right now she has a cut across her belly and up her chest, bascially and upside down "T". Tomorrow's closure will be working on closing the horizontal cut. We will leave the vertical cut open until maybe next Monday. The reason for this is that Ally has more skin lower on her belly then above. It's that whole tearing thing we are trying to avoid.

We also had a surprise visitor today in the PICU! It was Ally's first surgeon Dr. Katz who delivered her at birth and who has done many of her initial bowel repairs in the first 6 months of life at Bryn Mawr hospital. She was so excited to see us, as we were to see her. Dr. Katz now works in Pittsburgh as we had already known, but this morning as she was looking through x-rays, she noticed a familiar name, Ally! She also noticed on the x-ray much of her initial work was no longer there! Meaning only one thing to her...Ally finally had her bowel transplanted. Seeing that made her hunt us down to see first hand how Ally was doing. Dr. Katz will forever be a hero in our book, and after talking with her, she was more then gracious to help us anyway she could in the hospital or out. She even offered to do our laundry and watch Ashley!! Wayyyy to nice!
We told her to watch what she offers, because we could fall on hard times. It's always good to have such great docotors who know Ally close by, and today seeing Dr. Katz was a great comfort!

Not much else to report. Having Ashley here is tough. She is having a hard time with being here and does not look forward to being in the hospital during the day. So both our mothers have been busy today keeping Ashley busy away from the hospital. Right now Ashley is swimming at the hotel pool, which she thinks is way cool!

We are taking things one day at a time, and figuring out things as we go. The next few months will be tough.

Please keep the prayers and thoughts going, they are working!! Don't forget to pp-dance ;)

Shane

Today has been an okay day for Ally. Some things could be better but than again things could always be worse, so we will just take things the way they are! Ally's main problems today have come from being too positive in her fluid intake from yesterday. Her urine output has dropped off considerably and all that extra fluid seems to be finding it's way to her lungs. Her vent settings are about the same but her oxygen has been increased to maintain her sats.

Ally was started on a small amount of Lasix during the night. At that time her blood pressures were a little on the low side so they didn't want to diurese her too much. Needless to say all morning her BPs have been high and they have doubled her Lasix drip twice. Unfortunately at this point we have not really seen an increase in her urine output.

She has gone about 18 hours without recieving any blood products which is always a good thing. Her liver numbers were elevated significantly today but the docs are hoping this is just a delayed rebound effect from the transplant. Ultrasounds and repeat labs are being done now.

I also got another good look at Ally's abdomen today during her dressing change. All I can say about this is WOW!!! Transplant in itself is just an amazing feat but to see your child laying there with her abdomen open and to be able to clearly look at all her abdominal organs is just unbelievable.

Shane may update again later tonight we will see what the rest of the day holds. Ashley drug both of her grandmom's with her to the children's museum and they should be returning soon.

Please pray for Ally to be able to get off some of her extra fluid and please pray that her liver enzyemes start to trend down. Thanks for all the prayers and support that you all have offered up to this point.

FYI...The Corvettes for Kids Golf Outing for this upcoming Monday is cancelled! There were not enough people to hold the event. Please think about attending or donating to the main event "corvette car show" August 12th! This event is to help Ally and us with expenses in Pittsburgh that insurance does not cover.

Thanks.
Jill

Today was a quite day of healing. Not much to report. To me no news is good news. All we want is Ally to rest and heal, and that is what she is doing.

So far she looks great. I always hesitate to say or write how she is, because I feel that will cause things to change for the worse. Ally is doing so well, that I think we have this huge sense of something is bound to happen hanging over us that we feel a bit uneasy. We know it is early in the recovery process, but you would be amazed at how well she looks. I'm so proud of her and what she has accomplished in her short 3 years of life. To be Ally's Dad and Mom is not easy, but we could not be more proud of how she's done that last two days!! Even though she was scared the other night before surgery, you could see the fight in her eyes letting us know she could do this.

As for what to expect next...it looks like Wednesday Ally will go back to the OR to close more of her abdomen. The rest will be closed next Monday. The surgeons want to be careful at closing her in stages, so that she can heal without any major or unexpected tears.

Thanks to everyone for your support the last few days. The words and prayers are greatly appreciated and give us a great sense of comfort knowing your helping us through this, even if you are miles away!

Sorry to anyone who has emailed or called, and we have not yet responded. I'm sure you understand that our days are extremely long, and not much time is available to answer right now. We will also try to do better with updating the site, but for now, expect updates to be later in the night. We currently only have access to the internet at the hotel, not the hospital.

Besides the long days with no sleep and Ally recovering, we are also now having to get our lives straight with where we will be living, and how we can best maintain our lives in Pittsburgh and back home. Currently we are quickly seeing how fast expenses add up just in the last few days with being here. We don't have much choice, but we are trying to be creative with parking cars, food, hotel, etc.

Many have emailed saying they want to help. If you have ideas we are always open to support. One way by helping Ally is to remember the two upcoming Corvettes for Kids events. Both these events are listed on the website, and all the proceeds will go to Ally's recovery here in Pittsburgh.

Also, please remember to keep Ashley in your thoughts and prayers. I think people tend to forget that she too has gone through a tremendous amount of pain, learning to cope with an ill sister. As parents we sometimes struggle with the balance between Ashley and Ally. We do our best, but some days we forget to stop and listen to everything Ashley has to say. I'm so looking forward to getting all this behind us, so that we can live a nice boring life just being a Mom and Dad to Ashley and Ally!!

We will update again tomorrow night.

Shane

Sorry for the long delay. But here it the much anticipated update.

We arrived in Pittsburgh yesterday at 5 p.m. by car. The drive to Pittsburgh was extremely stressful. I would have hated to be the people in front of us on the way out. A few times I would have liked to use my bumper to get on our way. It's hard to express to others on the road just how important it was to move out of the way as you are driving to save your childs life. Lesson from this, is if someone is that much in a hurry to pass, let them ;)

When we arrived we were quickly admitted to the transplant floor and given a room to await further instructions. At about 8 p.m the surgeon who was going to retrieve the organs came into explain the situation and the plans for the night ahead.

What we know so far is that the organs came from a child in Detroit that was Ally's size and was physically abused to death. Murdered sadly to say. It's hard to hear these types of facts as you wait yet for another chance at saving Ally's life. We always knew the organs would come from a child that would pass from a head injury, but to think of a child who did not have to die, is hard to deal with. We will be forever grateful for the one parent who chose to doante life to Ally, even in their most trying circumstances. Continue to pray for them, and to remember their loss.

The surgeon left Pittsburgh at 8:45p.m. last night, arrived in Detroit at 10p.m. to evaluate the organs. As this was happening Ally was sleeping. We wanted her to get as much rest as possible before the battle began. At 12:30a.m. this morning, Ally was moved to a holding area where we said our good-byes, and where she was finally sedated for surgery. Before she went to sleep I gave her one last fight speech, telling her that she needed to give her all one last time! She responded with a small high five.
The hardest part about all of this was letting her go. She screamed all the way down the hall as they got her ready for surgery. Very tough to hear as a parent, and very difficult to let her go.

Ally's surgery started at about 1a.m. this morning. First removing all her organs (stomach, pancreas, liver, and small bowel). This part of the surgery lasted until about 9a.m. this morning. The second part of the surgery was placing all the donated organs. This lasted until about 1p.m. We waited another 6 hours to see Ally at 7p.m tonight.

Overall the surgery has gone well. She looks great and is on about 35% oxygen on the ventilator. They did not close her abdomen yet because the tissue is just not there to close her without it tearing open again. For now she has a clear piece of plastic protecting her new organs as she lays with her belly cut open. Sounds bad, but if history would to repeat itself, and the surgeons tried to close her right away...Ally would just break open anyway. This approach is fine with us. If all goes well in the next few days, and her fluids are maintained well, they will take her back to the OR and close her. As for every else going on...I think it's best not to get to technical just yet, because knowing Ally it will all change later tonight.

If you know Ally's history, you know that she is more likely to be trouble five days out of surgery, rather than just after a procedure. We are holding back our emotions of relief, and instead praying for the next few days to go with no major complications.

I think I covered most of the major highlights from the last 24hrs., but am sure I missed a few. I guess not sleeping for the last 30 hours will cause some memory loss. Tonight Jill, Ashley and I are going to sleep at the hotel, while our parents take turns visiting with Ally. Then at about 1a.m. the plan is to switch shifts with our parents and spend more time with Ally into the morning hours.

Sleep will come in short time tables as we try to get Ally back to health, but as long as we get her healed, it is all worth the lack of sleep!!

Thanks to everyone for the the much needed messages on the site. Your support gives us the courage and strength to stand along Ally and fight!

Please keep Ally in those prayers as the next few hours and days will be critical!

Thanks,
Shane

The call just came!!!!!!!!! We are going to Pittsburgh for Transplant. The call came as we were coming home from the shore. Please pray for Ally!!!!!!

Will update later. Shane

This should come to no surprise to anyone who knows how are luck is. Yesterday morning Ally got the call from Pittsburgh saying that her organs were available and ready for transplant. However, 3a.m. that morning Ally for the first time in 2 months ran a fever 101.9. When we told Pittsburgh this, we were automatically declined for surgery! Talk about being disappointed. To top the day off, Ally never ran a fever again later that day.

Ally everyday looks to be getting worse, and we are hoping our luck will turn soon. Something is brewing with her, that is for sure. In fact, tonight she is running a low grade fever. I'm sure if our luck continues the way it has in the past, the whole fever thing could ruin our trip this week to the shore with family. I guess we will have to see how the next day goes to determine whether or not we can get some much needed fun!

No doubt, Ally is at the top of the transplant list, but getting her to be healthy enough to make the trip is key. We are trying to be positive about being declined, and maybe this set of organs was just not right for her. The problem is the window for a healthy day with Ally is small. Basically all our stars need to align in order to make this happen to save our Ally. Please continue to pray we get another call, and that when it comes, Ally is healthy and ready to go.

On some other news, the Corvettes for Kids event in honor of Ally is approaching quickly. It looks like the golf tournment is about 30 people short of making this event happen. If you golf and or have friends who want to play in the tournment, please see the information on Ally's website to join. All of the proceeds go to Ally and our expenses in the near future of living in Pittsburgh. Here's your chance to play at one of the best courses in the area! If we do not have enough people, the event will have to be canceled!!!!

Also, the Corvette show is soon going to be here, and anyone looking to donate items for auction, please see the Corvettes for kids site to make a donation of any kind of item. There you will see the list of items available the day of the show.

We also have Corvettes for Kids shirts available for sale. $10. and raffle tickets that are $2 each. Winning Prizes for the raffle are: 1st $500; 2nd $200; 3rd $150; 4th $100; 5th 50.

If you are interested in any of these things mentioned please contact us at aajsheintz@yahoo.com; or 215-234-9686.

Thanks for the continued support!

Please if you would, include Joe, Chris, and Ali McDonough in your prayers the next few weeks, as they deal with the loss of their son Andrew.

Many of you have followed Andrew's story via the link off Ally's site and have been praying for his health to improve. Andrew is at peace now. Andrew's sister Ali updated his site later this afternoon. She says it best "Our hero is healed. Andrew's in heaven watching over us."

The following email I received the other day. Please read it carefully. Andrew and many others before him have taught us how short and how precious life can be.

A friend of mine opened his wife's underwear drawer and picked up a silk paper wrapped package:

"This", he said "isn't any ordinary package."
He unwrapped the box and stared at both the silk paper and the box. "She got this the first time we went to New York , 8 or 9 years ago. She has never put it on and was saving it for a special occasion. Well, I guess this is it. He got near the bed and placed the gift box next to the other clothing's he was taking to the funeral house. His wife had just died.

He turned to me and said, "Never save something for a special occasion. Everyday in your life is a special occasion."

I still think those words changed my life. Now I read more and clean less. I sit on the porch without worrying about anything. I spend more time with my family and less at work. I understand that life should be a source of experience to be lived up to, not survived through. I no longer keep anything. I use crystal glasses every day. I'll wear new clothes to go to the supermarket, if I feel like it. I don't save my special perfume for special occasions, I use it whenever I want to. The words "Someday..." and "One Day..." are fading away from my dictionary. If it's worth seeing, listening or doing, I want to see, listen or do it now.

Now, I try not to delay, postpone or keep anything that could bring laughter and joy into our lives. And on each morning, I say to myself that this could be a special day. Each day, each hour, each minute, is special.

Not to much to report this past week. Ally had her labs drawn on Monday and they were decent. Her ALT AST and GGT were all up a little bit from last week but her bili's stayed the exact same so that was an improvement from them increasing. Hopefully next week we will start to see them come down. Ally has run a low grade fever the past two evenings but I am just hoping this will go away.

We had a nice fourth of July and then we headed to the mountains for a couple of days. We made another trip to Knoebels. This time with some of our cousins and grandparents so the girls had a lot of fun!

This weekend the Ronald McDonald House of Delaware is having a Corvette Show fundraiser for the house. The corvette show will be from 11am-4pm on Saturday the 14th. If anyone has any further questions they can link to the site from Ally's home page. Shane and I were planning to attend but we are probably helping out at a habitat for humanity house.

Hope everyone continues to enjoy their summer and to stay cool in the heat. Please continue to pray for Andrew and Shane's cousin Lisa.

Jill

Happy 4th of July!!!

Hope everyone is having a great holiday week. We have had a busy couple of weeks which is why I have been too lazy to update.

Last week I took Ally to Pittsburgh for her check up. The docs there were definitely concerned with Ally's liver numbers and would like to figure out why they have begun to increase so steadily. We had an ultrasound done while we were there to see if Ally's bile ducts had a narrowing area somewhere but of course everything looked fine. At least if something was there we could have done something to improve things. For now the docs are holding off on the biopsy because that would really only show rejection (which would be highly unlikely) and inflammation or infection (which would have been treated with the IV antibiotic she was on two weeks ago).

Today I got Ally's lab results from her labs that were taken yesterday and all of her liver numbers were up again. Her totatl bili is now 10.6 and her direct bili was 8.6. These numbers are still nowhere close to what they were when Ally started with end stage liver disease but they are concerning. Especially since seven weeks ago her direct bili was 0.4 and her total was 0.8. One thought is that Ally is just suffering from TPN induced cholestasis. However it seems a little strange that this is occuring so rapidly since Ally has been on TPN ever since her transplant. Ally has received more lipids in her TPN (the lipid solution is what causes to liver cholestasis and eventually can lead to end stage liver disease) over the last two months. Since Ally was so sick in March she lost a considerable amount of weight. Since she can not tolerate an increase of calories through her g-tube the extra calories must be give through her IV fluids. Ally is just now back to the weight that she was when we went into the hospital the first week in March. GI and Pittsburgh thought it would be a good idea to drop a day of Ally's lipids to see if that helps her liver numbers to improve (she receives TPN everyday but four days a week lipids are added to the TPN now she will only receive three days of lipids.)

The docs at Pittsburgh said they would give Ally a few weeks to see if her liver numbers improve or at least stay were they are. If things do not improve we may need to discuss some alternative IV fluids, something called omegaven. Currently duPont can not get omegaven because it is not FDA approved. Boston Childrens hospital first got approval to use omegaven and now Pittsburgh has recently begun using it on some of there patients. So we will wait and see what happens with Ally's numbers.

Other than all of that things have been good. If you have not had a chance to check out the latest video definitely watch the one of Ashley dancing in the living room. We have a couple of picnics this week and we are planning another trip to Knoebels. The girls have begun to count down the days until we leave for the beach so hopefully we stay 'healty" for that.

Please continue to keep Shane's cousin Lisa in your prayers she is still in the hospital. My girlfriend Sandra has finally came home from the hospital tonight but she is still having a difficult time so continue to pray for her. Also I know some of you keep up with Andrew McDonough's website (there is a link from Ally's home page to his site) and he has had an extremely difficult road. Last week he and his family headed back to the ICU at duPont. The latest posting shows that Andrew is out of the more immediate danger but that things are still minute to minute. Please pray for Andrew's healing and his family's continued strength.

Well, not to much to report. Ally had a pretty good week. It was definitely very busy and she manages to keep up with the pace. Her liver numbers had been up again with her labs last week so the docs decided to put her on some IV antibiotics to treat a possible infection in her liver. Needless to say she has been on this since last Tuesday and I don't really see a change in her. She will have labs done again tomorrow morning so we'll know those results by tomorrow afternoon or Tuesday morning.

I scheduled a last minute checkup appointment for Ally in Pittsburgh so we are headed out there on Wednesday. Poor Shane will be stuck at home by himself. My mom, Ally and I are headed to Pittsburgh and Ashley is headed to the Poconos with her Gram for two days. I am sure he'll manage and probably enjoy the peace and quiet. Besides when the girls and I are living in Pittsburgh he'll have a lot of quiet nights so he better get used to it. I am anxious to see what Pittsburgh has to say about Ally's labs and to see if they have any suggestions. I really think there is nothing to do and it is just normal progression of her liver disease. The only thing that will really help her is to get transplanted.

On the up swing we had a great week spending lots of time outside. We were on a couple of bike rides and Ashley now has a tandem bike that hooks on to mine (and I even manage to keep us upright, which trust me is no small miracle). The girls also spent a lot of time swimming this week and we even took some more video although, I am not sure when Shane we'll get around to putting that up (maybe Wednesday night)! Everyone keeps commenting on the video we put up last week, especially the one of the girls in the pool. On Thursday night we went to the Reading Phillies game for their Gift of Life night. Our family was recognized for the funds we raised for this years Donor Dash (by the way that was over $24,000!!!). We stayed for the whole game and the fireworks after the game. The girls had a blast and Ally got to see fireworks for the first time!

Well like I said we have been busy living life. Unfortunately all of these outings have lead to a lot of extra wash, which is what I must go do now. :(

I'll try to update after we get Ally's labs back.
Jill

Please say an extra prayer for our buddy John. He is headed to John Hopkins hospital tomorrow for a procedure. Also Shane's cousin Lisa is in the ICU at Lehigh Valley Hospital. Lisa had a kidney transplant about two years ago and now she is waiting for a pancreas. Needless to say she is battling an infection so like I said she could use some extra prayers. Lastly pray for our friends the DiCesare's. Anthony is a little boy with similar problems to Ally ( we have a link to his site from Ally's home page). Thankfully he has been doing well but his mom (Sandra) had what should have been outpatient surgery done a few weeks ago and she ended up having some major complications which kept her in the hospital for the last two weeks. All of these people need your prayers I am sure they all feel as if they never get a break.

Thanks!

Happy Father's Day!!!

I hope everyone had a wonderful week and a wonderful Father's day. I think Shane was just enjoying the fact that we were home. We had brunch at my parents and the girls got to spend some time with their cousins and in the pool. Later this evening Shane's parents and my parents came over for dinner. We had a very nice day.

Shane put some new pictures and video on the site yesterday so be sure and check that out. I had to bug him all week because I am pretty much computer illiterate so I don't know how to do pictures or video. The videos are too cute!

Ally has had a good week. Her bili and her other liver enzyemes were up again with her labs. The rest of her numbers were pretty good. She had a check up at duPont on Thursday. She had also had a low grade fever on Thursday but thankfully nothing since then. The docs are a little concerned about her bili because since her transplant her bili levels have never been elevated. Her other liver numbers always bounce around but not the bili. We had not been too concerned because we know Ally is already listed for another liver but since her numbers have been increasing kind of rapidly they may need to look into things a little further (ultrasound and possibly a liver biopsy). First the docs will see how tomorrow's labs look. We all thought Ally looked a little better yesterday and today. Of course this may just be wishful thinking or we could just be getting used to her bronze tan.

We did talk to Boston this past week and had set up to go up there next week. Unfortunately later that day we received a call from our insurance to tell us that Boston is not considered a center of excellence for bowel transplants because they have not been doing the bowel transplants all that long (this does not mean that Boston is not an excellent hospital or that their bowel program isn't good it just means they have not been doing them long enough to receive this recognition). Unfortunately for us that means Boston would be considered an out of network hospital and we would be looking at a tremendous amount of out of pocket fees. Also we would not receive a travel and living expense fund like we can receive with Pittsburgh. We are still talking to Boston but it is looking like we probably won't be able to take Ally there to be listed.

At first I was very upset about the insurance thing with Boston but the more I think about it I think things will be okay. Don't get me wrong I am still frustrated with our insurance and the fact that this is even something I have to worry about. However, at the same time I think maybe my prayers have been answered. For months Shane and I have been struggling with the idea of double listing Ally. Then we decided to pursue Georgetown and that got us nowhere (and our insurance approved that trip). Then we decided to persue Boston and we finally get things arrranged and all this insurance stuff comes about. Deep down I would love to just stay at Pittsburgh and all of this time I have been praying for God to help us decide if we should double list Ally and where. Maybe through all of these road blocks God is telling us to just stick it out with Pittsburgh and that Ally's call is coming soon! Anyhow, I guess we will wait and see what his plan is for us!

Happy Father's Day!
Jill

I hate to update this site when things are going so well because it always seems to be a jinx. However, I know many people have been curious and asking how things are going with Ally.

The last 10 days or so have been extremely busy and the girls are enjoying the summer like weather. We made two trips to Grandmom's pool and the girls enjoy their baby pool at home. I took video of them in the pool so I will have Shane put that on the site. Also, today the girls sang togther in church and we video taped so hopefully he can put it all on this week.

As far as transplant stuff goes we talked to Boston again on Friday. There is apparently an epidemic at transplant facilities and all of the coordinators have lost their communication skills. Needless to say they have done nothing so far to get Ally up there for an evaluation. They called to ask for our insurance info ( which I had already given two weeks earlier) and to ask for a medical release form (which I had faxed back to them on Monday). So we are frustrated all around and at this point still just praying that her call will come soon from Pittsburgh.

Ally is looking good, as long as you can get past her yellowish hue. Which isn't terribly noticeable but her yellow eyes you can't miss. Her bili went up slightly with last weeks labs but not a huge change. Her liver numbers aren't really all that concerning to us because they probably will just continue to rise until she gets the transplant. They are still miles away from being critical or from her having bleeds like she had when she had needed her first transplant. Her bowel function is just so poor right now that she rarely stools so she can not excrete the bilirubin. So for now we will put her in a lot of pink clothes and avoid yellow and green.

Ally has been getting around pretty well and is keeping up with Ashley as best as she can. I think this week I will put a call in to her therapists and try to get some sessions started with OT and PT. As much as I miss our wonderful night nurse (and some of my sleep) I love having so much alone time as a family. Ashley loves having Ally in her room and Ally seems to be equally excited. It means everything to me to be able to tuck the girls in at night together. That is a huge change from three months of tucking Ally in at the hospital and either saying goodnight to Ashley by phone or tucking her in at the Ronald McDonald House.

So many times over the past week I have caught myself just sitting and watching the girls play together. Their laughter and giggles fill my heart with so much happiness. I feel so blessed to be a part of their lives.

Take care,
Jill

Yeah, we are heading home. This was by far our shortest and healthiest stay in a long time. Other than Ally's fevers Tuesday and yesterday morning, she has shown no other signs of being sick. She has been extremely active and happy. She has not had a fever since yesterday morning so we are all set to go.

Also I talked to Pittsburgh today and we straightened out the whole phone number thing. I talked to the transplant coordinator and she said that they had the numbers the whole time that the other coordinator was not looking in the right place. She was in the process of calling our regular coordinator to find more contact numbers for us when I called her back.

We will update sometime when we have time which, when we are at home is never!!! We are praying for a longer than 10 day stay at home this time!

Take care,
Jill

P.S. I keep forgetting to include this in my updates but I wanted to thank all of the wondeful nurses, clerks, and aides on 3Csouth. You guys have grown to be our extended family. We thought Ally's quality of care could never be as good as what it always was in the PICU but you guys definitley rank just as high on our list. You are all awesome and I can't begin to explain the relief I feel knowing Ally is always in such loving and capable hands! Thank you.

Well we had a few nice days at home the past week and a half. Unfortunately, as of now Ally is headed back to duPont and is being admitted for high fevers. All of her liver numbers are elevated, and frankly she looks awful. Put it this way, she is a nice shade of yellow/green! Means only one thing, liver issues!

Not sure what the plan is for the rest of the week(s) ahead, but we need to see if Ally can still make the trip to Boston to be evaluated.

We found out today that the organs that were available yesterday in Pittsburgh, went to no one! Turns out the organs had poor blood flow. So I'm guessing we are now back in the number 2 spot on the waiting list. Please continue to keep Ally in your prayers as she fights off these infections. Thanks!