Ally Heintz

Wow, thank you everyone for coming out yesterday to my church to have breakfast in my honor. I wish I could have been there to meet and greet all of you.

Mommy and Daddy could not believe how many people cared for me. In fact, they said they really didn't know that many of you. To think that complete strangers to our family would take the time to show just how much a loving community can be, really makes getting haelthier an easier job for me. All your prayers and support I know are being heard from God. Daddy says there is with no doubt a plan in store for me. I can't wait to let you know what it is.

Thanks to everyone who made the breakfast a success and took the time to help serve the 1,203 people all those yummy pancakes and french toast.

So you all know, today I was feeling much better. I was laughing, playing, and reading my fan mail that Mommy and Daddy brought to me from the breakfast. I am no longer needing any oxygen, and maybe in a day or so I will be back to my old settings on my vent. The doctors were in today and said I will be making a trip to the OR on Tues. at 2pm. This is to remove a stint from my liver transplant, and then maybe the docs will place a G tube in my belly for feeding. That still is undecided if that will happen. Cross your fingers and say a prayer, and maybe I will get it!! Other than that, today is a day of rest, and healing.
I will try to write again soon.

Love, Ally

Hi everyone, mommy said that I could write my own update today because I'm feeling much better. Since the update on Tuesday I have been doing very good. When my mommy arrived today I was awake and I played with her, I even gave her two smiles!

My doctors have stopped some of my meds and my most recent culture for influenza was negative. Unfortunately,I'm still on two meds that keep me really sedated. I am usually only awake for about an hour or two each day. The doctors had restarted my feeds but they had to stop them because I was vomitting. They think this is because of the sedating meds slowing down my GI system. My transplant docs are still very happy with my liver functions. Today my bilirubin was 0.9!!!

My mommy just told me that on Tuesday I'm making a quick trip to the OR. The transplant and GI docs will perform a scope to remove a biliary stint that was placed during my transplant. They are also going to try to place a G-tube endoscopically. Having a scope is not much fun but, if I get a G-tube I will no longer need a NG tube. That means for the first time in my life I would have no tube on my face, YEAH!!!

Mommy and Daddy said that I can't go to the breakfast that my church is having for me tomorrow, but they said that they would go and Ashley would eat some breakfast for me! Talk to everyone soon. Take care and thanks for all the prayers. Love, Ally

So sorry for the delay with this update. Ally has been keeping us and especially her nurses very busy. Fortunately, so far today has been a pretty good day.

The last update we posted was early Saturday afternoon and Ally was not doing so well. By later afternoon and throughout the evening she was doing much better. Mostly Ally was having respiratory distress with a lot of wheezing and difficulty moving air in and out. Sunday she had seemed much more stable. However, stability went out the window on Monday. Ally had a very up and down day yesterday and she ran Kelly, her nurse, ragged! Last evening the docs made yet another change to the ventilator but, this change seems to be helping alot.

Since last night Ally's heartrate has come down to the 120's and her carbon dioxide levels or end titles have come down from the low 90's to the high 50's. She was awake for a little this morning which amazes me since she is on numerous sedating meds. Also this morning Ally's feeds were restarted at a very small amount basically just to stimulate her gut. She also looks much better today and seems to be more comfortable. She is almost back to her weight that she was admitted at so the docs have decreased the continuous Lasix that she was receiving.

Again I'm so sorry we did not update sooner but, I will try to update by Thursday. I will be busy though, big sister Ashley is coming down tonight to see Ally for the first time in 10 days. She is very excited about staying at Rondald McDonald House and seeing her sister!

We arrived this morning to the hospital to find Ally doing even worse than yesterday. Ally has tested positive for influenza A (basically the flu). She has been having major respiratory issues, and is extremely uncomfortable. The docs are now giving Ally continous meds to help her get rid of the extra fluid she has on her body. They also put her back on continous meds to keep her sedated.This is because it is easier to ventilate her when she is not upset and fighting the ventilator support. The doctors said the next few days things could get really bad. So Ally is receiving constant supervision by a huge number of people.

Besides all the respiratory and Flu issues, the liver seems to be Ok for now. I won't say much more than that, because if I do, I will just jinx things, you know what I mean? Ally's bilirubin level is down to 1.5!!! Amazing!

Before I go, I must send a big Thank You to Lisa Reynolds (my boss from Vanguard) who stopped by today to visit and bring us lunch & goodies to get through the day. Just the time she spent talking with us was much appreciated, thanks Lisa. Thank you also for being so understanding with my time away from work, that in itself has been a life saver for our family.

Keep praying for Ally, and we will update again soon.

Ally today is not doing as well as the last two days. We kinda of expected this, since Ally's worst day after all her past surgeries was always the third day. She is much more swollen today in around her face and upper chest area. She also is very uncomfortable, and seems to be crying much more. Its been a very difficult morning to have to watch her feel so much more pain all over again.

Later today we are going to work on getting rid of some of that extra fluid, and making her more comfortable. Ally also has started back on her TPN fluid his morning. Remember, even though TPN was the cause of her liver failure, she still needs her nutrition. We just now need to start her formula feedings, and hopefully with time those feeds will increase enough to get rid of that TPN forever. GI has said that maybe this week we can think about slowly starting to feed her. I guess will wait and see. Ally will also have PT and OT coming in soon to start working with her again.

This weekend we will be posting some pictures of Ally so you can all see how she is doing.

Before I leave to go back to be with Ally, I thought I would post the next "Ally Event". Jill and I never have really mentioned to much about past events on the site, but a few people have told us they wanted to attend previous events and did not know or here about it on the site. Sorry for the late notice on this event, and I'm sure many of you may have already known, but our church has decided to have a breakfast for Ally to help support our family through this difficult time.

BREAKFAST FOR ALLY

Saturday Feb. 26th
St. John's Luthern Church
North Reading Avenue, Boyertown PA

All You Can Eat (served buffet style)
*Pancakes
*Texas French Toast
*Sausage & Scrapple
*Orange & Apple juices
*White & Chocolate milk
*Coffee-Decaf-Hot tea-Hot chocolate

Plus a great selection of take-home baked goods.

OPEN TO THE PUBLIC! Take out available

Adults: $6 Under 12 and Senior Citizens: $4

Tickets available in advanced and day of event.
For tickets call 610-367-0363.

Directions:
From King of Prussia
1.US-422 WEST - go 19.5 mi
2.Take the PA-100 NORTH exit towards ALLENTOWN - go 8.2 mi
3.Take the NEW BERLINVILLE exit - go 0.2 mi
4.Bear on MONTGOMERY AVE - go 0.3 mi
5.Continue on N READING AVE - go < 0.1 mi
6.Arrive at N READING AVE, BOYERTOWN. Church is on the right.

For other dirctions, please ask when purchasing tickets. Thank you.

We look forward to seeing, and meeting with all of you next Saturday at church. Hopefully by that time we may have caught up on some sleep.
You all have truly been Ally's Angels. Thank You!

Ally is having another good day. Some minor problems have come up but all in all things are looking good. I have just spoken to one of the transplant docs and both of them are very happy with how things are looking.

Ally has been having some issues with high glucose levels. This is not uncommon with the steroids so they have started her on an insulin drip. This morning they turned off her fentanyl(narcotic) and are now just giving her morphine when needed. They also took out her Arterial line and her foley catheter.

Of course Ally is Murphy's Law so since the catheter has been out her urine output has dropped considerably. Also her carbon dioxide levels had been on the rise and with out the arterial line they have been more difficult to monitor. They have made some changes in her ventilator settings and also changed her trache. She now has a cuffed trache in and that has eliminated her leak and is making it easier to ventilate her.

I am very happy to report that Ally's billirubin level today was 3.0 direct and 3.5 total. She is definitely loosing her golden orange glow. She is a little puffy today, mostly just in her face. I am still amazed how small her belly is even with a liver three times the size it should be. She opened her eyes a little today. The docs took down her dressing and although her incision is very large I think it looks fantastic.

We will update again tomorrow unless there is a change before than.

We know you all have been anxiously waiting this update. Nurse Karen, Shane said not to get your panties all in a bunch, he is too tired to update!

Ally is doing very well, actually I think we are a little surprised as to how well things are going, so far. She had an ultrasound done this morning that showed great blood flow to the liver and all the blood vessels look good. Her ventilator settings are pretty close to what they are at home except she is on some oxygen. The docs are optimistic that they will be able to wean that within the next 24hrs.

Ally was taken to the OR around 7pm, she was sent off to dreamland and the OR team started putting in some peripheral IV's and Arterial lines. Around 9pm her incision was made and they began working on freeing up her liver. At 11pm we saw a man walk into the hospital with a box marked "Fragile, organ and tissue for transplantaion". Needless to say it was Ally's new liver. Around 2am we were told that the liver was in and they were stitching it in place. Ally arrived from the OR to the PICU at 3:45am.

We spoke with Dr. Dunn and he was happy with how the procedure had gone. He advised us that nothing would be happening in the next 12hours and that it was in our best interest to get some rest. We stayed at the hospital till about 5am then checked into a hotel and then checked out around noon. When we arrived back at the hospital Ally was in good hands with Miss Barbara. (Thank you Miss Barbara for coming in today just to take care of Ally).

So far Ally really hasn't had any 3rd spacing (fluid retention) however, her urine output had dropped so they were giving her some albumin. She has three JP drains which have all been draining a minimal amount of fluids.

We know that Ally's liver came from Texas from an older child who suffered some kind of trauma. We thank god for helping this child's family choose the gift of life! We pray for their family and hope that their choice to donate helps them in their greif.

We also want to thank all of you for your prayers and words of encouragement. Our parents who spent the entire night here at the hospital, uncomfortable, with us. We also thank all the doctors and nurses that were called in to help care for Ally during her surgery. Thank you to Deb Frock (works in pre-op) for staying till 11:30, to check on Ally and to give us updates. Thank you again to Miss Barbara, we never have to worry about Ally when she is in your care. Also thank you to Aunt Jen and Uncle Clint for taking excellent care of Ashley.

Sorry for the long update and all the thank you's the update was starting to sound like an award show acceptance speech. We will try to update the site once a day. Take care,
Jill, Shane and Ally

Quick update, before I leave work to get to the hospital. Ally is scheduled for a liver transplant at 7pm tonight. She also did not have any bowel obstruction. Thank You GOD!!

We will try to update the site, tomorrow morning after the transplant.

Sorry for not updating sooner, but Ally is back in the hospital. This past weekend she was not feeling well, and in the middle of her second birthday party on Sunday, we noticed Ally had a high temperature. Needless to say, the party ended with us leaving for the emergency room Sunday evening. We finally we're able to get Ally into a room in the hospital at about 3:30am Monday. She seems to be doing a little better. The bad news is, the doctors are concerned Ally might have a bowel obstruction. The doctors took some x-rays last night, and if they can't determine anything from them, today she will have a barium study.

Jill and I asked the transplant team yesterday, that if she does have an obstruction, if it were possible at the time of surgery to fix the bowel, that we also just take a part of my liver so that Ally can get both surgeries done at once. We don't know the answer to that yet, because first we need the answer to whether or not she has an obstruction.

Later today, we will try to update the site with the results of the tests. Please keep Ally in your prayers today. She really needs all she can get.

Hi there everyone, thank you all for my happy birthday messages. Mommy and Daddy are still having a hard time believing that I am one year old. I am looking forward to my other birthday party coming up this weekend.

I am writing this message to you from duPont. I had to make another trip down here so I could get some more blood. My mommy and my nurse are hoping it is the last trip because I haven't had any blood in my diapers for about five days. Unfortunately the medicine that I'm taking to stop the bleeding makes me vomit, alot. Mommy told me she is going to get a job washing clothes because that is all she does anymore.

I'll get some more labs drawn on Monday and then we will see if I need to be transfused again. Other than that we are just waiting for our call.

Hope you all enjoyed my pictures, I think they are pretty cute! By the way my molars on top just broke through so now I have 10 teeth!!!

Wow!! Can you believe I am One year old today. Daddy and Mommy say this past year has felt more like 5 years rather than one. Needless to say, today is my big day.

Yesterday, we had one of my first of many party's that included my grams,pops, and even my Big pops showed up. We all had a great time. Mommy baked me a cake the night before and decorated it as my favorite character ELMO. I must admit, I was not sure what to do with the cake. My sister helped me blow out the candle, and she also didn't mind in helping me open my gifts too. I did however get some cake icing on my face. Not to worry my GI friends, I did not swallow any :)

After the party was over Mom and Dad cleaned up, and sent me to bed. I think I still had a few hours of partying in me, but Dad said to save it for next week, when we have our second party with Mommy's family.

Anyway, this morning, I thought it would be nice to let Mom and Dad know that even though I am now one, I still have many tricks up my sleeves for them.

Daddy was on duty this morning watching me, and I thought it would be funny to see if he noticed anything different about me. Oh course he did. I should of known he figure it out. It must of been all that great training he got at duPont to keep him on his toes, even with such a large lack of sleep.

You see, I thought it would be funny to pull my trach out and leave it tucked under my shirt as if it were still inside me working. Except Daddy figured it out when he heard me making sounds that were not like me. He quickly got Mommy to help, and when they tried to put the trach back in, it would not go back. Mommy however, was fast on her feet to get a smaller size trach, and finally got it back in place and hooked me to my vent. Through all that, I must say, I did very well at breathing on my own for about 5 minutes. My SAT level never left a 100%. Pretty good I must say, for pulling out my trach for the first time.

Well, the day is young, and I still have many of hours of partying left, but before I go, I would like to let you in on my birthday wish. The wish I have is to someday be able to thank each and everyone of you personally for helping me fight through the toughest year of my life. Wait, it's the only year of my life, right? Anyway, thank you for helping me, loving me, taking care of Mommy, Daddy, and Ashley, and for just praying and thinking of me. Without your love, support and care I know I wouldn't have made it this far. I bet you thought I was going to wish for a liver, huh? Well, not to be greedy in anyway, but that too would be a great wish to receive. Maybe soon... Love Ally.

Ally has had an okay week. However, I am writing this update from duPont while Ally is busy sleeping during a blood transfusion. Her nurse and I were hoping it would be a fairly short visit but they are giving her the blood over a four hour period.

She had some bleeding every day this week and the doctors are working on increasing some of her meds. They also set it up so we can draw blood at home for lab work and then I take it to Phoenixville hospital and they run the labs STAT. Her next labs we will draw on Monday morning and I can drop them off on my way to work. Ally is also set up to have another transfusion next Thursday here at duPont.

Otherwise things have been okay and we have been able to wean Ally's oxygen. So now she is just dependent on the vent but needs no supplemental oxygen. We are having a Birthday/Superbowl party for Ally. Shane's parents and his brother's family will be attending. Her 2nd party will be next weekend for my family because Grandmom and Grandpop are reluctantly heading out of town for a few days. I insisted they go because if they leave we will definitely get a call for a liver!

Hope everyone enjoys their weekend. Maybe there will be some Birthday pictures on the site on Monday. Ally says "GO EAGLES"!