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!

Ally is doing ok this week. She continues to need her blood pressure monitored, and medicine to control it. A week in the hospital, has also had a noticable effect on her physical strength. Ally is not wanting to walk now, and struggles more to stand. It's amazing how a week in the hospital can take such a toll on her strength. The therapist said not to make her work so hard right away. We will have to work up slowly again to building her strength in her legs again.

Enjoy the new photos, and we will update again soon with any new changes.

Ally was able to come home yesterday! The fevers stopped, and all her issues without TPN subsided. The only issue she has yet is that her blood pressure has been high. This can been from the TPN also, and something we need to watch the rest of this week. All in all, it was a tough week for all of us, but we pulled through it. Ally is one tough little girl!! How she does it, I'm not sure. All your thoughts and prayers, this past week were greatly appreciated. I know it's one of the things that keeps us going, and remaining strong and positive. Thanks!

We will update again soon, and I will try to get the Halloween photos up this week.

Ally went to the PICU last night because her magnesium and calcium levels were extremely low. So low, they were afraid she might start to seizure. She was really sick and uncomfortable last night. Her temps continued through the night, reaching as high as 102.

This morning Daddy stayed with Ally, while mommy went to work for a few hours. Ally was better today. She has not had a temp. since 4 a.m. and we think we have her magnesium and calcium stablized. The reason for the drop was not having TPN all week. The pituitary gland in her brain was slow to act to the change without TPN. The gland becomes lazy, thinking it will get the minerals it needs. When she didn't get the TPN, we had issues. Ally should of been weened from the TPN.

As of now, we are waiting to see what some of the blood cultures continue to show. We still need to know why the temps continue to occur. There was mention of going home tomorrow, but we know better to get excited about that.

We will update again soon with more changes.

Ally recieved her central line today. I'm not sure why she got it, because she still had a temp. After surgery, Ally is still not herself. They ran some blood cultures after surgery, and they came back not so good. Ally may need to be transfered from the floor to the PICU. We will update again soon with any new information.

Ally ran another fever this morning, and the placement for the central line was canceled for today. If she can remain the rest of tonight and tomorrow morning without a fever, she will have a line placed at noon tomorrow. So far today she has not had any temps., but just awhile ago she started feeling warmer than usual.

Early tomorrow holds all the answers to whether or not she gets the line. Please pray that she gets this line to start TPN soon. She needs this in order to survive! This week has been long, both stressful and time consuming. Please excuse us if we have not received or answered your emails or calls. Maybe after tomorrow we can catch up on everything else around us. We will update again soon.

As of right now Ally is scheduled to have a new line placed tomorrow. This morning I was told the line would not be placed before Friday because Ally had run a temp all day yesterday and spiked a temp again this morning. This afternoon they changed their minds since Ally did not have a temp all day they felt they should try to place a new line.

Finding the perfect time to place the new line is a little tricky. With out a central line Ally is unable to receive her usual IV fluids (TPN) and therefore is losing weight and nourishment. However they can not place a new line if she still is positive for a blood infection because then her new line will be infected.

Overall she was definitely feeling much better today. Yesterday she did not want to be held or touched she just wanted to lay in bed. Today she was out of bed a lot and even went to the play room for about an hour. Unfortunately, she just lost her peripheral IV so another will need to be placed tonight so that she can receive IV antibiotics, some more fluids, and sedation for the OR tomorrow. It will not be a fun night.

Please pray that Ally can get her new line tomorrow and that we can come home tomorrow evening.

We will update again sometime tomorrow.
Jill

The past week has had its good times and bad for Ally. Ally returned home from Pittsburgh Thursday night very exhausted and tired from the long trip. The doctors there said that they have not had any calls for intestinal transplant for almost 2 months now. Ally is grouped with two other younger children with a blood type AB in our region waiting for an intestinal transplant. Ally being the oldest and having the longer time on the wait list, will put her closer to the top. Her points as of now are 28 out of 40. That's ok, more in the 30's would of been better.
All we can do now is wait, just like we have for the past 10 months.

Friday, Ally ventured out with her sister to do some Trick-or-treating. She had a great time! Pictures will come later this week.

Saturday and Sunday were not that great of days for Ally. As the weekend progressed, the more frequent and higher her temps. became.

Sunday night, was the worst night of the entire week. Of course right before a long day in the hospital Monday. Ally ran high temps. all night long, we lost power at home with the high winds, and somehow got 2 hours of sleep.

Monday at 5:15 a.m. Daddy and Ally made the long trip to dupont to have her infected central line removed. Surgery was at 8:45 a.m. Everything went fine with the removal of the line. It was quite the experience for Daddy and Ally to go at this alone without Mommy around (working). Needless to say after surgery in the recovering area, there were alot of Mommy's been yelled from Ally! As Monday passed, Ally still has not cleared her temps. This is a great concern, mostly because in the past as soon as the source of infection (line) is removed, signs of high temps disappear. Today will tell us more of what is to come. As of last night she was very tired and sick! Please pray these temps and infection clear, so Ally can have a new line placed tomorrow.

We will update again with any further news.

Ally is making a scheduled trip today to Pittsburgh for a follow-up appointment. She will return home Thursday night. We hope to find out more at where she is on the transplant list, and get a better idea of her health status.

Yesterday, duPont called and told us that Ally's central line turned up another positive culture. The line will be pulled from her chest and a new one will be inserted next Monday. This means all next week we can look forward to a weeks worth of hospital time. Looks like the girls will yet again spend Halloween at duPont.

If we find out any news from Pittsburgh, we will update with that information later this week.

The past week or two have been really busy. Ashley had her 4th birthday party last week, which turned out to be a great time for all of us. As you can see from the pictures, this year's theme was Ariel!

Ally has been doing ok. Friday we got called to say that her last blood culture was positive. Again with the same bacteria which has caused us to lose her central lines. She is not showing signs of being sick, so we are hoping we caught it early enough to treat with antibiotics before things turn for the worse.

Ally and Ashley are both growing up fast. They both are enjoying the days home together learning just how to be sisters. So many times watching them play together, I wish alot of this hospital stuff was behind us. Knowing what difficult times are ahead, make these days that much more meaningful!

We will update again soon with any changes.

Ally made it home yesterday. She went the last two days without a fever. Nothing turned up positive on her blood cultures, but they still put her on an anti-biotic. She will be on that the next few days. She is back to being her happy self and doing fine. Our job now is to try and keep her that way until the call comes from Pittsburgh.

We will update again with any changes.

So much for making it through the surgery without any issues. Ally started feeling very warm last night, and by the early morning hours was running a temp of 103! Needless to say she has been admitted to duPont and will remain there until we can determine what the cause is. Best guess would be a line infection. Please send her your prayers, so that she can return home soon.

We will update again soon with any new results.

Ally had a good nights sleep last night. Of course a night where we thought we could sleep in until 7 or so, we were awaken at 6 a.m. by the nurse taking care of Ally saying she was crying and wanted us by her bedside. By the time we got to her this morning she was fine. The doctors checked her trache site and gave us the ok to go home. The rest of today Ally has been pretty good. She handles pain like a champ!!! I think this surgery was small potatoes too what she is used to going through. None the less, she is still in pain, and will heal within a week or so.

Just a reminder Basket Bingo is this Sunday. Also if you noticed the password has been removed from the site. The reason for that is it became too much work to maintain. Hopefully we will not have any issues not having the password in place.

Ally went into surgery today around 3:00 p.m. The procedure lasted about an hour and a half.

The procedure went well. They had a hard time getting her to wake up, but after a half hour she was ok. She is in alot of pain, and is getting pain killers around the clock for the next day or so. There was alot of crying for Mommy when she finally awoke in the PACU. She also wanted water and wanted to be sitting up. After a few sips of water she closed her eyes and was asleep sitting upright. She didn't want to lay down once she was up, but once we put Disney on, she decided it just might be better to be lying down to watch TV instead of sitting. Sometimes she can be so stubborn, and thinks she can fight anything without help.

As of right now we are waiting to be moved to the floor into a room. The hope is that Ally can come home tomorrow. The night should determine what is in store for us tomorrow.

We will update the site tomorrow.

Today Ally is scheduled for surgery at around noon to have her tonsils removed, and her trache hole closed. She will spend tonight in the PICU, with the hope of only having to stay one day in the hospital. Of course we know better than to expect everything to go as planned, and are packed and ready to stay a few days rather than one. We will update later today, and let you know how she is recovering from surgery.

Ally spent a few days at duPont this week seeing doctors. For the last month she has had a difficult time sleeping. Many of nights she would hold her breathe causing her monitors to alarm. So, after Thursday's meeting with the ENT doctor, it was determined that Ally needs her tonsils removed. The surgery is planned for 21st of September. Also during the surgery she will have her trache hole closed. This should be great! Ally may find she will be able to speak much clearer with this hole closed.

You would think the kid could keep at least something of her own that she was born with. Oh well, whats another surgery and a few nights in the PICU to us at this point?

No news from Pittsburgh. Just waiting for the call. Hopefully the call can wait till after the 21st.

If you haven't had a chance to get tickets to the bingo, please do so soon. Tickets are still available. Thanks again for all the support and prayers.

BASKET BINGO FOR ALLY
SUNDAY SEPTEMBER 24TH, 2006

Bally Fire Company

Doors open at noon, Bingo starts at 1 PM

If you would like a ticket(s) please send a check payable to ALLY HEINTZ RECOVERY FUND for $20.00 per ticket along with a self addressed stamped envelope to: LuAnn Reichart, 356 Mill Street, Boyertown, PA 19512. Tickets will also be available at Bause’s Drug Store and Body-Borneman Insurance, after August 10, 2006. You can also call LuAnn at 610-367-0363 or Jill's mom at 610-367-6693 to purchase tickets.

Happy Labor Day!
Ally made it home from Columbus just fine. The test were done in one day rather than two, because they were having trouble keeping the tube in her stomach. The test results showed that Ally had a very slow moving bowel, which include the whole small bowel, not just a portion. The stomach was aslo slow to empty. This all confirms that Ally does need an entire small bowel and stomach when transplanted. At least now we know we are doing what is right to ensure the best options for Ally's continued health.

On other news we just returned home from a small trip to the mountains. Not very nice weather, but a chance to be with family.

Ashley starts pre-school tomorrow, and is very excited. Ally will soon be able to start Sunday school in the coming weeks and is also just as excited to be like big sister Ashley!

Not much else happening, which is fine by us. Update again soon with any new information.

These past few days and weeks have been busy ones for our family. Ally, Jill, and our nurse left Monday morning for Columbus, Ohio for a schedule trip to have a motility study. The test is being done to see how much function Ally's small bowel really has, and to determine whether or not she will need a stomach when transplanted.

The study was to last two days, but since they had trouble keeping Ally's tube in place inside her stomach, they completed the test in one day. We should learn more today, and what the results showed. Ally and Jill, hope to be able to leave today, and make it home later tonight.

As of right now there has been no news from Pittsburgh. We just are continuing to enjoy our days outside of all the hospitals, and trying to get Ally stronger physically so that she will be ready for the transplant.

I hope everyone had a great summer, and if you have time and a chance we would love to see you at the next Basket Bingo!! Pittsburgh is going to be one major expense hurdle we could use a much help as possible. Between an apartment that will cost $2500 a month, traveling expenses back and forth across the state, and all our everyday bills at home, this next battle is looking more and more expensive everyday. Any help is very much appreciated!!

We will update again soon with test results.

BASKET BINGO FOR ALLY
SUNDAY SEPTEMBER 24TH, 2006

Bally Fire Company

Doors open at noon, Bingo starts at 1 PM

If you would like a ticket(s) please send a check payable to ALLY HEINTZ RECOVERY FUND for $20.00 per ticket along with a self addressed stamped envelope to: LuAnn Reichart, 356 Mill Street, Boyertown, PA 19512. Tickets will also be available at Bause’s Drug Store and Body-Borneman Insurance, after August 10, 2006. You can also call LuAnn at 610-367-0363 or Jill's mom at 610-367-6693 to purchase tickets.

THANKS for caring about ALLY and our family, as we prepare for our biggest battle yet; living in Pittsburgh and getting through transplant, in the hopes for a full recovery and healthy little Ally!

PLEASE PASS THIS INFORMATION ON TO ANYONE YOU KNOW WHO MIGHT BE INTERESTED IN HELPING ALLY.

HOPE TO SEE YOU THERE.
Shane and Jill

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

The week trip was a busy week of fun, lots of driving, kids crying and fighting, and appointments.

We started the trip Monday and went to the mountains to enjoy a day of fishing. We spent Monday night in the mountains.

Tuesday morning we drove to Knoebels amusement park so that the girls could have some time to have fun before Pittsburgh. Ashley loved the park, Ally on the other hand wanted nothing to do with the rides. Be sure to check out the new photos on the site. You can see who was having fun, and who was not.

After about 4 hours in the park we drove another 4 hours to Pittsburgh. We finally made it to Pittsburgh Tuesday night at 8 p.m.

Wednesday morning was another busy day. We took the girls to the Childrens Museum for a day of fun and a chance to be creative. They both enjoyed themeselves. You can also see these pictures in the new album.

Thursday morning, we looked at some apartments, and made the trip to the hospital for our appointment. Everything was pretty much routine. Ally is still being treated for a line infection. Pittsburgh transplant still wants us to go to Columbus for the motility study to be sure that Ally is or is not having issues with her stomach emptying. The docs said it is important to see this because when she has surgery, replacing the stomach makes the procedure much more complicated, so if we can avoid replacing an organ, we should try to do so. So we get to take another trip west! Yeah!!!

Not much else was discussed. Ally has had some calls for organs, but the docs have declined them for reasons they did not say. They expect us to sometime in the next three months get a call that will fit our needs for transplant. So we will just keep on waiting.

Also while we were there in clinic, we got to met a little girl who we have seen numerous times at duPont. She also had bowel issues and was at Pittsburgh the same time we were in December for a bowel transplant consultation. The difference this time seeing her, was she had her bowel transplant three months ago. It was nice to see her walking around looking so good, and to have a chance to say hello. It gave us a little more hope that soon we too can get where they are. One step closer to seeing Ally healthier!

We will update again with any new changes. Enjoy the photos.

Saturday we spent about 4hrs in the ER, while Ally received her first dose of antibiotic. After that was complete we headed home to get ready for the long week ahead.

Today we had a somewhat normal day. Spent all of the day with family hanging at the pool and watching racing. We also found out that we will not be making our trip to Columbus, Ohio for Ally's motility study. The doctors at duPont called Ohio, and once they found out that Ally had a line infection, they declined to see us. Not sure what will happen now that we are not having the study.

The plan for this week is to leave tomorrow for a trip to the mountains, spend a night or two there, maybe stop off at an amusement park so the girls can enjoy some rides, arrive in Pittsburgh Wednesday afternoon, then onto our appointments for Thursday with transplant. After that we may spend another day looking for an apartment to live in later on, and Ashley is dying to go back to the childrens museum in Pittsburgh. Sounds like a vacation, but most times turns into work. Some how we are always on the go. We thought since we had the time off and have to go to Pittsburgh anyway, why not try to make the trip enjoyable for the girls, and make a mini vacation. Who knows when we will ever get a chance to take another family trip, so why not now.

We will update again from Pittsburgh sometime Thursday or Friday. Until then...Happy Father's Day!

Another quick update. Last night at 11:30 duPont called to say Ally had another line infection. They wanted us to bring her right away, but we refused. Instead we are headed to the ER this morning, and may return home later today, hopefully.

This could really change the palns for the rest of the week. Monday we are to leave for Columbus, Ohio for three days so that Ally can have a motility study done of her small bowel, and then on the way home we have two days of doctor appointments at Pittsburgh. A week to really look forward to. Looks like the fun starts today instead of Monday. Yeah!!!

We will update again soon.

Sorry for the long period of time without an update. Just know that if there is no update, things are going ok. Ally is doing much better after a week of antibiotic treatments to fight off the last infection.

Ally is scheduled for appointments at duPont tomorrow, and hopefully Jill and her will have time to stop by and see the Maichers.

We will update again tomorrow with any results found, and fill you in on the upcoming plans that we have for next week and all the hospital visits.

Stay tuned . . .

Not sure why I would think that we would ever get a break or vacation from a hospital, but Friday we had all planned to take some time and spend it with our families in the mountains. Of course Ally had plans of her own.

Friday, after spending the morning packing the car to the roof, we finally were on our way to the mountains. When we got there the weather was not so great, but we made the best of it. We spent a few hours fishing, and then ate dinner with gram and pop. The whole day Friday, Ally just did not seem right. Thursday night she was up tossing and turning and even had a slight fever. This should have been our warning, but when she woke Friday, she was fine. So we continued our plans. Friday came and gone and as night came, Ally started down hill. First needing oxygen, then came the high heart rates. Needless to say we spent another night without much sleep.

Saturday morning we knew we had to make the long 4.5 hour trip to duPont to have Ally checked. Ashley stayed behind to continue her vacation with the family, only making our trip that much harder knowning we couldn't be together as a family. On the way to duPont the excitement continued. Just before arriving at the hospital, we were pulled over by a state trooper. Quick thinking and getting some alarms to sound off in the car with Ally's equipment does wonders for getting out of tickets! The cop realized the situation and left us go. Yeah!!!

We spent the next 4 hours in the ER getting blood cultures from Ally's central line to check for an infection. After waiting and finding nothing from the results, we were allowed to go home. But the fun didn't stop there.

Sunday morning at 4 a.m. the ER callled to say we had to bring Ally right away that her results finally grew out an infection in her line. So we again packed the car and arrived at duPont only this time we were admitted to the floor. We spent most of the day Sunday in the hospital receiving antibiotics for the line infection. After getting clearance to do the rest of the treatments at home, we finally made it back home later that night.

Then there was Monday. As we were getting ready to give Ally another dose of antibiotics we discovered that her line was unable to be flushed. Right then you know you just bought another ticket to the ER. So off we went this morning. I think today was the worst, mostly because we were exhausted from the days before. We spent another 5 hours in the ER for the third day straight, and with a little luck we were able to use TPA to open the line and draw back blood from it. Great news!!! If this hadn't had worked we would be there for a least a day or two, and would have most likely needed a new central line.

After missing the entire weekend off, we were still able to keep Ally home!

Its funny we drove a total of about 800 miles, spent $120 or more in gas, didn't get much sleep, missed time to enjoy ourselves as a family, and yet still feel lucky to just be home as of tonight. I guess we learned that at anytime things could change for the worst and that you should enjoy anytime that is a good time when you have the chance!

Ally will continue the anitbiotic treatment this week in the hope that the infection clears. Hope everyone had a great holiday, and we will update again as things progress.