Ally Heintz

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