Ally Heintz

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I'll update again tomorrow. Take care, Jill

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

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

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

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

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

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

Happy Mothers Day!!

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

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

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

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

LOVE ALWAYS. ALLY

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

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

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