Ally Heintz

Just a quick update to say that Ally made it home late this afternoon. Ally had a good day today and seems back to her normal self. The area around her G-tube site has finally stopped bleeding and her hemoglobin is holding at 9 which isn't fantastic especially since she was just transfused but it is good enough for now. Unfortunately her liver numbers did jump some today so the docs thought it best to increase her rejection meds and follow up with labs tomorrow at home. Hopefully this as all just a little fluke from Ally being so sick (this has happened before and turned out to be nothing.)

Hope everyone is recovering from the busy holidays!
Jill

Ally did not come home today. The doctors changed some of her meds, and wanted two doses given in the hospital before going home. We should be able to come home tomorrow! We will update soon with any new information.

We added photos and some video of our Christmas in the hospital. Enjoy!

Merry Christmas from duPont!! Well, even though we had to be in the hospital for Christmas, we made the best of times. Santa paid a visit to both of the girls and both were very excited to open gifts this morning in Ally's room.

We could of came home today, but made the decision to stay. Ally has had negative blood cultures for the last 4 or so days now. She has continued to have small temps. but they are also on the decline. We think that she had some kind of viral bug on top of a line infection.

On Saturday, we went home to pack more clothes and stuff for the rest of the week, and while at home Ashley started throwing up. We got her cleaned up, made our way back DE, and along the way Ashley again was sick in the car. Lucky for us we were prepared with a bowl!! Ashely remained sick for about 12hrs, into Sunday. After Sunday morning she was fine. We think Ally may have gotten this same viral/stomach thing like Ashley. Instead, with Ally it presents itself in a more complicated manner.

Today Ally has had alot of blood out in her bag and diaper. We think a few people have caught the side of her stomach while emptying her bag, causing a small injury to the stomach area. Her belly was also slightly distended, so we had transplant look at it, and some xrays done to make sure everything was ok. So far the xrays show nothing! Ally was also on oxygen over the weekend because her SATs were low. As of last night she has been fine without the oxygen.

So for now we are going to see how tonight goes, and make a decision tomorrow whether or not to go home. We do not want to go home for a day, only to turn around and come back. It takes too many hours to clean and pack our hospital and Ronald McDonald room. . .come home. . .unpack, only then to have to return. We have done this before, and its not fun. It was actually nice to stay together today as a family and not worry about all the holiday running around. Not that we wouldn't want to be home, trust me, but Christmas turned out just fine the way it did!!

Hope everyone enjoyed their day as much as we did.
Merry Christmas!

Yesterday Ally recieved some blood due to some of her numbers being so low. She also continued to have high temps due to the infection in the line. We started given her Motrin, which seems to be helping her be comfortable for a least 4 hours or so.

We were told yesterday, that she needs to have a day without a temp, and one negative blood culture before she can come home. That leaves today as our only shot at making it home on time for Christmas! My guess is that there is no way we will be home. Right now our focus is saving the line. She has only had the line for 7 weeks. If we continue in this direction, it spells big trouble!

Our plans are pretty much made to spend the week here, including Christmas. The way we see it, as long as we are together as a family, that is all that matters. The girls have been having fun with all the activities for the kids here, in fact Ashley was on the 11 O'clock news last night playing her harmonica during a group lesson at the child life center in the hospital. As far as seeing family, well I guess if they really wanted to see us, they could visit. Our focus is keeping Ally healthy, and making a Merry Christmas for both the girls!! I'm sure our Moms and Dads will be here to keep us sane ;)

We will update again later today or tomorrow, and maybe even later this week, we will try to include video of our Christmas morning with the girls.

Well unfortunately things have gone from bad to worse for Ally. She continued to have a fever all day today and really slept pretty much the whole day. We managed to get her out of bed for a little this evening and she sat on my lap.

Her labs from last night were improved. Both her hemoglobin and her platelets were up. They both are still on the low side but at least they went up instead of down. The worse part is now her blood culture has grown bacteria. So we know we will not be going home before Saturday and that is if we can get a negative blood culture. As bad as Ally looked today I would say that so far the antibiotics are not killing the bacteria.

At this point we have made all our plans for Christmas in the hospital. We will make the best of it and the girls understand that Santa will find them wherever they are. Now I am just hoping that even if we have to be here hopefully Ally can at least feel better than she did today.

We will try to update again sometime tomorrow.
Jill

Ally the last few days has been running a temp. Monday we took blood cultures to be tested, and they came back negative so far. Ally's palettes are low, and last night she ran a temp of 103.8. We called duPont this morning, and they told us that they are admitting us to the hospital, later this afternoon. We need to find out what is wrong. Could be viral.? Who knows. What I do know is that if we can't figure this out in a few days, we will be spending Christmas in the hospital. Two little girls are going to be very disappointed. I guess we should just come to expect these things.

We will update soon with more news.

Ally's blood cultures from this week have come back negative. She has not had a temp since Monday. We are hoping we can make it past Christmas before the infection makes its way back. We really want to be home for Christmas. That in itself would be the best gift we could ask for.

Ally and Ashley are looking forward to tomorrow. We are taking them to see Santa and pick out our Christmas tree.

If your interested, tonight on the Discovery Channnel (not health) at 9 p.m. is a story of a young girl we know similar to Ally. Here is the description of the show.

Surgery Saved My Life
Six-Organ Transplant

Gretchen Miller has not eaten a meal for over a decade, living instead on bags of fluid fed intravenously. Her weight dropped to 67 pounds. She has to endure a six organ transplant in a 20 hour operation but the organs can only survive 9 hours.

This should give us some idea of what to expect in the near future.

We also learned today, the little girl who went to Pittsburgh before Ally did last December, and was transplanted with a small bowel in March and we had the chance to meet in June, died this week. News like this makes you wonder what fate holds for us.?
It also makes you realize we should all enjoy our time together now!

We will update again with any changes to Ally's health.

Ally has had a few great weeks this past month. She has become much stronger and is getting very good at walking. We had a nice Thanksgiving, and alot of family time these past few weeks.

We have not heard any news as far as transplant goes. Still waiting. In fact in another week or so, it will mark the 1 year anniversary of being on the waiting list.

As far as Ally's health, well I wish I could say all is well. But as of a few minutes ago, she was running a temp. She has not been herself the past few days, and I'm sure we are looking at days in the hospital soon. It seems we can only spend about 3 weeks away from the hospital before having to go back for infected lines. So we are going to draw blood cultures tonight and drop them off tomorrow morning to get tested for a line infection.

Continue to keep Ally in those prayers! I know we haven't updated lately, but when there is no update, usually that means things are ok. We will continue to keep you posted on this weeks events!