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.
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!!
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!
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 firstname.lastname@example.org; or 215-234-9686.
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.
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.