Ally Heintz

Ally and all of us are having a good time here in Ocean City, MD. The weather is nice, and too much surprise Ally is enjoying the sand and ocean. Yester she sat by the water playing in the sand, counting shells in her buckets, and all the airplanes that flew past. It's so nice to see her having such a good time. Ally even went on some rides at the amusement park the other night. I don't think much could scare Ally after all she's been through. She's for the most part very easy going.

We will be returning home on Saturday. A few days on the beach I think is plenty for all of us. Even though we enjoy seeing the girls have fun, doesn't mean there's not alot of work involved to make that happen.

Enjoy the photos, and we will update again soon.

Ally finally had enough hours of negative blood cultures these past few days to go to surgery early this morning at 11 a.m. She did very well in surgery, and a new central line was placed in her upper right chest area.

Ally dealt with the pain very well and was out of the hospital by 2:30, not before Ally saying her good-byes to our buddy and neighbor on the floor John Maicher, who we hope can come back home soon. Days at duPont just become more difficult once you are home and have to return. It makes getting home even that much more important.

The plan for the days ahead are to keep Ally on some anti-biotics in the hopes that come Wednesday Ally will be able to make a short trip to the shore with all the other family there this weekend. This would be Ally's first trip ever to the beach, and we hope we can make it there this year, and come home to share with you the great photos and times we had.

Keep John in your prayers that he can return home soon, and that Ally's infection continues to stay away as long as possible.
Your prayers must have worked this week to get us home, so keep'em coming for John and Ally!!

Shane

Just a quick update. Ally had blood cultures drawn on Monday. Yesterday they were still negative. That doesn't mean too much until at least 48 hours have passed. So, if later today they still remain negative and remain so until Friday, Ally will then have a new central line placed and be able to come home. If they come back positive, the plan is still unknown.

Today Ally will have a bone scan performed to see if the infection is within her bone marrow. I'm not sure what will happen if they find anything. All we can do is continue to hope that all test and cultures remain negative.

We will update again soon with any other results or changes.

Shane

Some bad news. Ally did not have her surgery today for a new central line. It seems after the weekend without the old infected line, Ally's latest blood cultures turned up positive again with the same blood infection. The plan right now is not real clear.

First we will try to wipe out the infection with a different anti-biotic, in the hopes it will work. Also in the meantime we can place pic-lines in her arms and legs to get her the TPN (food) she needs. At the earliest a central line could be placed would be Thursday.

Please pray that Ally can clear this infection and a new line can be placed. Without a line and with an infection, puts us in a very difficult and scary place!

Nothing has changed the last few days, except Ally is feeling much better without that old infected central line. If anything she is bored and keeps wanting to go outside to play and swing. Lucky for us, we are in John Maicher's old room with the patio just outside our door. So Ally likes going out there for some fresh air and sunshine. She also is spending her time winning the hearts of all the new nurses on the 3c floor!

Surgery for the new line is still scheduled for tomorrow, and if all goes well Ally will be allowed to leave shortly after the procedure.

Next update will be after surgery.

Well we knew this day was coming. Ally is currently in the PICU at duPont. Jill and I brought her yesterday, because Ally was having difficulties breathing Thursday morning. Needless to say our trip to duPont was nothing short of excitment. On the way down Ally had some episodes where she really was retracking hard to breathe. Making daddy drive all that much faster. Instead of waiting for a room on 3C south at 3p.m. as scheduled, we called the hospital to get her directly into the ER. Once there we were seen by many of docs. After stabilizing Ally, she was off to the OR at 3p.m. to have her central line removed from her chest, and to have a temporary line placed. The line obviously the source where all her bacteria collects from her gut not working. These infections are very serious, and deadly if not treated fast enough.

Ally did well in surgery. She had a peaceful night and rested well. Her heart rate and breathing improved greatly after removing the line. She is still on some oxygen, and in a few minutes will be trabsferred out of the PICU to the floor. This will be great for both her and Ashley, because when your on the floor you can go to the playrooms!! Yeah!!! Can't wait!

The plan now is to keep Ally over the weekend, pray for no more infections of the blood, and at 11a.m. Monday back to the OR for a more permanent central line to be placed in her chest.

We will update again soon with any new changes!

Shane

Yesterday was by far one of Ally's longest days at duPont. Thankfully though she was allowed to come home last night so in the end the long day paid off.

We left for the hospital around 8 and arrived close to 10 (love the morning traffic and an accident on 422 to make it even more fun!) Luckily the nurses in day medicine were on the ball and took Ally's labs, culture, and blood sample right away. Apparently the blood bank was not in such a hurry. It took almost three hours for Ally's blood to arrive. So around 1pm it was finally started. So I was hoping to make it out of there around 5:30 or so.

In the meantime Ally's labs started to come back. Her white blood cell count and platelets were up and even her hemoglobin had gone up a tiny bit on its own. This meant that Ally would be allowed to come home with me as long as she continued to look so well. Her magnesium had dropped yet again and was now almost non-existant so they decided to give her a magnesium infusion when the blood was over. Plus our infusion company sent a new bag of TPN for Ally that had more magnesium added to it.

Unfortunately just as we were packing up to leave at 5:30 a nurse form the IV team arrived and said that she had orders to place TPA (clot busting medicine) in Ally's line and than leave it sit for two hours and than pull the medicine back off. I was very confused why there was such a rush to do this at 5:30 when we had sat there all day and there had been no mention to me about this. The nurse that had her in day medicine was just as upset because she was not informed of anything and day medicine closes at 7:00. It is not a 24hour unit, hence the name day medicine.

Finally after paging Ally's doc he came down to explain why this had to be done right now. Apparently the blood culture that was taken that morning at 10 had already gorwn and they received a call about it around 4:30. Needless to say the TPA is probably the last ditch effort to save this line. In theory the TPA sits in the line in the hopes that there is a fibron type sheath around the bacteria. Than in theory this would break that sheath up allowing the anitbiotic to reach and kill the bacteria. There are studies that proves this work but it has been tried with Ally a couple of times and we haven't had any luck. Besides the fact that Ally's blood culture grew that fast shows that she has pretty signifcant blood infection.

So since day medicine was done for the day we were shipped over to the ER to be held until 8pm when they would pull off the TPA. There was no problems pulling off the TPA but now Ally's temp had spiked to 102. Now the attending in the ER didn't feel comfortable sending her home without speaking to her primary doc again. More paging and more waiting for a call back. Needless to say we thankfully got to come home. We finally left the hospital around 9:15 last night.

To day will hopefully be a quiet day at home and than labs on Thursday. However if Ally spikes a temp again today than we need to do labs today and another blood culture. I am not very optimistic about saving this line. I think it will have to be pulled but we will see. I know I would love to be proved wrong.

Again sorry for the long update and I'll try to write on Firday to keep everyone posted on whether we are at home in spending the weekend at duPont.

Take care,
Jill

So much for not having to update for a while. I think I update last Tuesday night and since Thursday night Ally has kept me going non-stop.

Thursday night just before her nurse got here she started running a fever but had no other symptoms of being sick. Friday morning I gave duPont a call they wanted her seen for some labs and a blood culture plus they decided to start her on IV antibiotics and not wait the two days for the blood culture to come back (especially since it was going into a weekend). Ally still ran a low grade fever Friday and than spiked a high temp Friday night. Saturday was more of the same thing but I was hoping after being on the antibiotics for 24hours things would improve.

When Sunday morning rolled around Ally still had a temp and was looking very pale and just over all not too good. I called duPont and they were concerned but said it was our call to bring her in. Her blood culture was postive but they had not identified the organism so therefore they were not sure if the bacteria was sensitive to the antibiotic that she was on. As the day went on she seemed to be acting fine so we decided to keep her at home. We also managed to keep her from spiking a temp during the night by giving her motrin and tylenol around the clock.

Unfortunately, this morning she had yet another fever. It was lab day so she had all her regular lab work plus a blood culture. Aunt Jeanne was at home with Ally so she kept me well informed why I was at work. It was too hot for Jeanne to go outside which was probably good for Ally so they took it easy indoors and Ally was acting like her usual playful self. However, around noon I got a call at work from duPont saying that Ally's hemoglobin had dropped significantly and they wanted her to come in to be transfused. Plus her other labs were all over the board. I worked till one so I told them I'd head home pick her up and we'd be down around 3:00.

At 12:45 duPont called me at work to ask if I could be at the hospital by 2:00 in day medicine. This of course would be impossible. I know somedays I feel like I should have super human powers but this would have meant driving from Phoenixville to home and than back down to duPont by 2:00. So they said they couldn't see us today because there wouldn't be enough time. A blood transfusion takes four hours and before they do that they most take a blood sample and check your blood type in the lab. Put it this way an appointment for a blood transfusion usually takes anywhere between 6-8 hours depending how fast everyone is moving. Needless to say they do the transfusions in day medicine and they are only in until 7:00.

We are now headed to duPont tomorrow for Ally's blood and some more lab work. We were also told that Ally still may need to be admitted. They identified her organism today and it should be sensitive to the antibiotic she is on but obviously it is not (this means that the antibiotic she is on should be killing the bacteria in her blood but it seems the bacteria is resistant to the antibiotic.) They decided to start Ally on an additional antibiotic tonight in hopes that together they two can get the job done. If tomorrow she still has a fever she will probably be admitted and than they will have to decide if they will try to save the line and keep her on the antibiotics a few more days hoping that she doesn't get more sick. Or they may have to pull the line an place a PICC line and than eventually place another central.

We'll see how tomorrow goes. Sorry for the never ending update but that is how the last few days have seemed! Please pray that Ally's fever goes away and that this infection can clear with the help of the antibiotics that she is on.

Take care and I'll try to update tomorrow or the next day.
Jill

Happy 4th of July everyone! We hope you all had a wonderful day we know we certainly did. We spent the day at Grandmom and Pop's enjoying the hot weather by cooling off in the pool. Ally has just recently started liking the pool and now she can't get enough. We had to make her get out tonight because her teeth were chattering and she was covered in goose bumps. She even managed to keep up with her sister and cousins by going without a nap. Of course, ten minutes into our ride home she was sound asleep and went straight to bed (yeah for mommy and daddy)!

Mostly things have been pretty quiet and slightly relaxed for us. We made one trip to duPont early last week because Ally had a fever, but thankfully her labs were good and her blood culutres remained negative. She finished her lastest round of antibiotics on Saturday so hopefully she can have a long spell off of them.

Ally's motility study in Columbus has been rescheduled for the last week in August. We haven't really made any plans towards this yet. We hate for Shane to have to take vacation again but I am not looking forward to a long drive by myself and buying plane tickets and than having to cancel is such a hassle. Plus just having to take all of Ally's equipment and pumps plus medical supplies on the plane seems like so much work. I am figuring it will all work out and it is certainly not something I am worried about because at the rate Ally has line infections she will never be healthy enough to have the study done!

Hopefully things will stay uneventful for a while, we kind of like it that way. So we will update sometime when we have some news again. In the meantime say some prayers for our buddy John Maicher and his family. John has had one bumpy ride the past few months but he is supposed to come home from the hospital tomorrow. Please say a prayer that John can come home and that his family has the strength and patience that they will need to care for John.

Take care and enjoy the hot weather. I love it so of course Shane hates it!

Jill