Ally Heintz

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.

Ally had only a short stay this week in the PICU. The removal of her trache was uneventful. She is doing well, and happy to be home. All we need now, is that call from Pittsburgh!

Please continue to pray for our friends the Maichers, and that John and his liver make a full recovery very soon.

Shane

Well, so far Ally is holding her own and than some without her trache. I just left her upstairs in the PICU with her favorite night nurse Kara. She was going to go help gossip out at the nurses station. We let her be a night owl when she is at the hospital!

It is so nice to see her without the trache ties around her neck. She hasn't been talking any more than usual but she was already talking so much with the trache in.

She will stay tonight in the PICU and than move to the floor tomorrow. If things are fine both nights than she comes home Thursday, hopefully in the morning.

I'll try to update again tomorrow night.

Jill

Sunday was a big day for Ally. She learned how to crawl!!! Not far of course, but exciting to see her move a few feet on her hands and knees. Since she has been home, Ally continues to gain strength and determination to be just like her big sister. I think the time waiting to be transplanted is good for all of us. It has allowed us to enjoy each day and gain progress in strength for the fight of our lives in Pittsburgh. Ally has remained on antibiotics and is for now, feeling and looking OK. We continue to take each day, one at a time.

Some other news as you might of seen on the homepage, is the story of Courtney. Since updating this site for 2 years I have always been reluctant to point out or write about the great things people have done for our family. I guess I never wanted to hurt others or forget to say thanks for something I should have. Maybe its because I would have been updating the site 10 times a day with all the great things everyone has done in the past.? I finally thought, these stories of people deserved to be told and given some recoginition for their kind gestures toward Ally. Moving forward when I can, I plan to mention the gestures of goodness towards our family to say thanks, and to let you know that good people still do exisit in this world today.

Courtney is an 11 year old girl who is the daughter of Lisa, a co-worker on mine. Both Courtney and her mother have done many of things for us. The other week as I was working at my desk, I heard a little voice behind me say, excuse me, Mr. Heintz... as I turned around there stood Courtney with her hands extended out with an envelope of money, a hand full of art crafted easter cards, and a photo of all the girls at her 11th birthday party. Talk about a surprise. It took every part of me not to cry in front of her. Just like an angel, she explained to me how she decided that instead of the girls bringing gifts to her party for her, that she wanted contributions made to help Ally. Easter cards were made by all the girls for both Ally and Ashley, and they also took a group photo with the banner that said "We love Ally". Seeing the time and thought put into each card, and watching Courtney tell me the story, I couldn't help to realize that she had learned a great life's lesson through Ally. Maybe the other girls as well.? Courtney is really an Angel for Ally, and I thank her and her mother for acts of kindness from their hearts to ours!!

What a busy weekend it was! Friday we took some time during the day to enjoy the nice weather before all the rain. We took a 4 mile bike ride with the girls. Little did we know, later that night we would be spending our night in the hospital. If we would of known, we would of conserved our energy and rest.

Friday Ally started a temp. It went as high as 103. We took her to the ER at duPont at 2 am, and spent the next 9 hours treating her for yet another line infection. We returned home, found a few hours to rest and prepared for another busy day.

Ally continues to need oxygen, and is still battling a fever.Most of the day she was fine and had no temp but this evening her temp was up to 103 again. We did just speak to her doc and they probably will want to see her again tomorrow. He said as of now her cultures are still negative, we will see how things look in the morning.

Crazy as we are we were determined to all show up in Philly for the Donor Dash today! The weather held off and the day turned out great. It was so nice to see all of our team there supporting us and Ally. Thank you for being there and taking a few hours of your weekend off to show your support for not just us, but to help the community fund the education of donor awareness!

Our team was made of family, friends, co-workers, nurses, and kids! We had over 30 team members, 4 who ran, and the rest participated in the walk. It was great to see others in our area, who were either donors or recipients of the gift of life. The day made me realize we were part of something special today. Today was a day you spent sometime looking at others enjoying the day, happy that someone thought to make the right decision to donate life so that all these folks could enjoy life again, and together. To see those young kids full of life, dancing, laughing, and enjoying time without a care in the world, brought a smile and hope that Ally one day could be doing the same thing as they were. Chances are, you, yourself will know someone who will either need blood, or an organ donation to save a life, and I hope you remember to make the right decision to donate!

Enjoy the photos of the team, and one last thank you to everyone for joining us, and who contributed to help fund the team. We look forward to you joining us next year in the DASH again!

-Shane

Hope everyone had some time to enjoy the holiday weekend, and the nice weather we had. Our weekend was busy as always, but found time to enjoy ourselves as a family.

Ashley and I spent Friday night and part of Saturday in the mountains for the opening of trout season. It's been a few years since I had some time to go fishing. It was Ashley's first time fishing, and of course when we hooked her first fish she freaked out! Needless to say she caught two trout, even beating daddy for the biggest fish! We had a fun time together.

While we were away, Ally and JIll ate dinner with her parents and spent some time together. However, late Saturday Jill caught a virsus and spent most of the day sick.

Easter came and Ashley couldn't wait to see if the Easter bunny visited the house. She quickly hopped out of bed, ran to the window, hoping to catch a glimpse of him in the yard. The girls had a great day. We went to church, had lunch at grandma's, two easter egg hunts, and finally dinner at my uncle's house. It was busy, but we are always up for busy, it fits our lifestyle now.

Enjoy the new photos from this weekend. Also, anyone interested in the dash please let us know soon, the team continues to grow. It always amazes me to see all the support we recieve from different folks at the various events for Ally. Thank you to all who joined or contributed. If you are still considering joining, please don't wait much longer, we would love to have all of you there if you could make it. Also please continue to include John and his family in your prayers!!!

-Shane

Hi everyone just a quick update because I don't have all that much to report. Ally's sleep study went fine it was pretty much uneventful. Ally slept pretty much the whole night and no alarms went off so I think she will pass just fine. We will not know the official results of her study for about a week and a half.

Thanks to all of you for all the prayers for John. I got to see him twice during this visit and today he was awake and joking around with me. I have seen John numerous times over the past month since his transplant and today he seemed on his way back to being the old John. He still has a long recovery including a transport tomorrow to Jefferson for some further testing on his new liver. Currently they are treating John for a rejection episode hopefully this will be his only one! Anyhow, keep the prayers coming for him they are obviously working.

Also don't forget to sign up for the Dash for organ donor awareness. The link is at the bottom of Ally's site. Registration for the walk goes up until the start of the event but after the 17th the registration fee is increased from $20 to $25. Also thanks to the many people who have already signed up or who have made a contribution.

Take care and have a wonderful Easter holiday. We are decorating eggs tomorrow and than I think Daddy and Ash are heading to the mountains for fishing while Ally and I go hang out a Grandmom and Pop's. We will all be home together on Easter day though to see what surpirses the bunny brings!!

Jill

I know I said that I would not update until after the sleep study but I lied! Anyhow, I am not really updating on Ally because she has been doing fine.

What I need is for everyone to say a prayer for our dear friends the Maichers. John has been having some more difficulties this week. His respiratory status has improved slightly and he has remained off the ventilator the past few days. However, John is having some problems with his new liver. John and his parents have been on a roller coaster ride for about a month now even though for them I'm sure it feels longer.

Please prayer for the Maichers to have strength and patience through this difficult time and please pray that John's liver begins to function again as it should.

Jill

P.S. Remember there is a link at the bottom of Ally's site to John's website. Please feel free to check that out and offer words of encouragement to the Maichers. John's mom often reads the site's guestbook entries to him. From my own personal experience I know how uplifting some of these messages can be.

Also I will still try to update Ally's site on Thursday after the sleep study. Hopefully Ally will sleep because I know Mommy won't.

It probably seems like forever since our last update. I know last week we really didn't give any info on Ally we just updated about the Dash for Organ Donor Awareness. Thanks to all the people who have signed up for our team. There is still time if you want to sign up. Early registration is till the 17th of April for a fee of $20. After that you can still register up until the 23rd but the fee is $25. Visit the link listed at the bottom of Ally's site for more info and remember to email us at aajsheintz@yahoo.com if you are signing up for the team.

Now onto your Ally update! She has been doing great and we actually have a lot of news to report. On Monday Ally had a check up with her pulmonologist. My main question was, "could Ally be decannulated?" and my answer, "I see no reason why she couldn't be, let's try to schedule for late this month or early May." Needless to say I was ecstatic!!!

Next Wednesday Ally will be spending the night at duPont for a sleep study and if all goes well with that than she is scheduled for a bronchoscopy and decannulation on May 9th. She will have a two to three day hospital stay at that time.

We also found out some more info from Pittsburgh. They finally made up there mind and want Ally to have the motility study done. This is scheduled for June 20th and 21st out at Colombus Childrens' Hospital in Ohio. Ally will be an inpatient for those two days. She is also supposed to go back to Pittsburgh for more checkups in June so we are trying to schedule those for later that same week. WOW! Summer vacation in Colombus and Pittsburgh. We probably are just going to make a week of it and that way we will get to have sometime exploring around Pittsburgh and to get more familiar with our surroundings.

No word about Ally receiving exception points. Pittsburgh seems to lack good long distance communication skills. I am praying she gets the exception points and that she gets transplanted before the trip to Colombus. It certainly is an added expense that Shane and I still pretty much feel is unnecessary. However, we are not the experts and Pittsburgh certainly is when it comes to bowel issues so that's why we will go for the motility study.

We have been busy filling our days with a lot of play time. Ally has also been busy with her therapies and is even trying to figure ou how to crawl. Her vocabulary is blossoming and I can't wait to hear how much she has to say once the trache is out. Last week we took a trip to Elmwood Park Zoo (thanks Aunt Jeanne). The girls had a good time and sometime I'll get Shane to put up some pictures.

Take care and I will update next week after the sleep study.

Jill

Jill and I wanted to get this information out as soon as possible. We would like to invite everyone to join our team this year on April 23rd to run or walk in the DASH for ORGAN DONOR Awareness.

Today, nearly 5,000 men, women and children in this region and over 90,000 people nationwide, are waiting for life-saving or life enhancing transplants. The major limitation to saving lives through transplantation is the lack of organ and tissue donors.

Fortunately, the organ donor shortage is a "crisis with a cure." In the past few years we have made great strides in transplantation and each step that you take in the Dash for Organ Donor Awareness will help highlight the importance of organ and tissue donation.

This year Jill and I are committed to making a difference in our community by forming a team for the Dash for Organ Donor Awareness, which will be held on April 23rd in Philadelphia and consists of a 3k walk and a 5k and 10k run. If you would like to contribute to or join our team, please contact us at 215-234-9686 or email at aajsheintz@yahoo.com

To register for th Dash or for more information, please visit the link on Ally's homepage, or by visiting the Gift of Life Donor Program's website at www.donor1.org. Remember to select our team name "Ally Heintz" when registering, and if you do go ahead and decide to register online (which we encourage) please afterwards send us an email saying that you joined the team. This will help us determine how many people are on the team.

Thanks again for all the support, and look forward to the seeing all our friends, family and community coming out to join us on April, 23rd to let Philadelphia know, we care for the well being of others and want to help save lives through the creation of promoting the importance of organ and tissue donation!

Call or email us with any questions. Thanks, Shane

I know it has been a little while since the last update but that is just because things have been going pretty well this past week and I didn't have much to report.

Ally is still on her IV antibiotics and she will remain on them for another week. Her labs this week were okay her liver functions were elevated a little but not enough to be alarmed. She will have labs again on Monday. She has also had two negative blood cultures, one was from last Friday and one was from Tuesday.

Ally went on her first play date this week and had a lot of fun exploring someone else's house! We are all itching for Spring weather. Both the girls love to be outside on their swing set so even though it hasn't been real warm we have still been outside a little. Ashley is busy perfecting her bike riding.

Our friend John is doing better since our last update. his parents update his site at least once a day and sometimes twice a day. I know many of you have emailed your concerns for him. We do have a link to his website listed at the bottom of Ally's home page in the "Links" category. Feel free to check on him and offer words of encouragement. His site is not password protected so you are welcome to view it. John is still a long way from healthy. He will probably head to the OR again next week so that the surgeons can attempt to close his abdomen. John is stable but still critical. Please keep him and his family in your prayers.

Last night I had the opportunity to speak at an event for Miller Keystone. For those of you that aren't aware Miller-Keystone is our local blood provider. They provide all the blood and blood products for 18 local hospitals which include Pottstown, Reading, and Lehigh Hospitals. They do blood drives at churches and community events and also have local blood donation centers. There is also a link for there website at the bottom of Ally's home page. Blood and organ donation is so important to our family. Blood and blood product donation is something that is so simple for us to do. It is our way to give something back and it could very well be something you or a loved one may need one day. Only about 5% of people that are eligible to donate blood actually do. Please I urge you to consider giving the gift of life by donating blood!
Check out the video from WFMZ of the event!

Take care and I will update next week.
Jill

Ally's check up yesterday at Childrens Pittsburgh went pretty well. They recommended a couple of changes and they are concerned about the amount of line infections she is getting. They are going to see if they can get her more exception points due to the frequency of the line infections. Still no final word about the motility study they said they would try to get back to me this week about that. They want to see Ally back in about three months unless she gets her transplant first.

Just a quick reminder on Sunday March 19th the Styling Gallery in Gilbertsville is holding a cut-a-thon for Ally. It is from noon till 5pm. Haircuts will be $10 and manicures will be $8. Any questions please email us at aajsheintz@yahoo.com. The Styling Gallery is located on RT. 73 or East Philadelphia Avenue across from Williams Pontiac (at the intersection of Rt.73 and Rt.100).

Please continue to pray for John. He is headed back to the OR today and the surgeons will attempt to close his abdomen, this may take more than one attempt. John is somewhat stable now but still VERY sick. We will get a chance to see him again today. We must go to duPont on our way home from Pittsburgh because Ally's IV antibiotics need to be changed so we have an appointment in Day Medicine at 4pm.

Take care,
Jill

A quick update to let you know that Ally was able to make her trip to Pittsburgh yesterday to keep her scheduled check-up appointments for today. We will update again soon with how she is doing in the next few days.

Please continue to pray and provide strength for the Maicher family, as they continue to fight through a difficult week. Jill and I were able to spend some time in John's room the other night visiting, and lending as much support possible. John will make it through this, you could feel that as you stood in his room. He is a true fighter, and look forward to seeing him continue his life as a healthy 21 year old! Keep on fighting John!

Just wanted to let everyone know that Ally was admitted to the PICU late last night for a line infection. They had wanted us to bring her down early in the day to the ER and than to be admitted and we refused. Ally had been acting like her normal self and no longer running a temp. She was also even able to be off her oxygen while she was awake.

Her labs from yesterday morning had looked great. However, they called last night a little after nine to say that the blood culture was positive and they wanted her admitted now.

Ally finally want to sleep around 2am so I am exhausted. She thought it was play time and tried to entertain everyone all night. This is what frustrates me about coming in for these line infections. I know that Ally has the potential to become very sick from these but if we catch them early she always seems to respond quickly to the antibiotics.

I don't know what all of this means about our trip to Pittsburgh. We are supposed to leave tomorrow around noon. I plan on talking to the team this morning and hopefully will have some answers.

Again, I am asking for your prayers for John Maicher. I talked to his mom last night around 8:30 and John was critical and had been that way all day. They were not even able to really complete John's surgery because things had started to go so bad. Currently John is on the osciallator and has lost a significant amount of blood. They somewhat have his bleeding under control at this point and he has (with help) finally been able to maintain his body temp. This is the only reason I am glad to be at duPont. I am glad to be here for Sandy John and Al and offer my support and my prayers.

Please pray for John today.

Jill

Please say some extra prayers for our dear friend John Maicher. After nearly three years of waiting John went to the OR last night to receive his new liver. As I write this update we still have not heard from his parents to see how he is doing. I am praying that he is in recovery and that they are exhausted from their long night. Please pray for John to have a quick recovery and that he may finally have a normal healthy life.

As for Ally, she is currently running a temp so I am sure we will also be headed for duPont today. Right now I am headed to work and taking her labs and a blood culture with me. Hopefully we will get this resolved quickly so that we can head to Pittsburgh on Wednesday.

I will update again later today. If you get a chance there is a link to John's website off of Ally's so check is site for updates on him.

Take care,
Jill

Just wanted to let everyone know that Ii had made a mistake in the last update about the cut-a-thon. Following is all of the information about that event.

Cut-a-Thon will be SUNDAY March 19th from noon till five at the Styling Gallery.

The Styling Gallery
930 E. Philadelphia Ave.
Gilbertsville, PA 19525
610-367-6299

They will be doing haircuts for $10 and manicures for $8

Any questions please email us at aajsheintz@yahoo.com

Ally had labs drawn today and everything looked pretty good. She is scheduled to go to duPont on Thursday afternoon for a checkup. She will also have a blood culture done while we are there just to double check that the infectionis clear.

We just want to thank everyone who helped with the beef and beer and thanks to all the people that came out to support us. Shane and I had a wonderful time. It was great to see so many people and friends that we just don't get to see anymore since Ally keeps us so busy! It was also nice to see so many people that we did not know but who wanted to come out and show their support for Ally and our family.

I will update at the end of the week if there are any changes. Otherwise I'll wait until next week.

Jill

Also, I wanted to let everyone know that the Styling Gallery in Gilbertsville have contacted us and would like to have a cut-a-thon, with the proceeds going to Ally's receovery fund. Following is all the information.

Cut-a-Thon Saturday March 19th from noon till five.
The Styling Gallery
930 E. Philadelphia Ave
Gilbertsville Pa 19525
610-367-6299

The salon will be doing haircuts for $10 and manicures for $8.

The salon is located at the intersections of Rt. 73 and Rt. 100 across from
Williams Pontiac.

Please feel free to email us if you have any questions.
aajsheintz@yahoo.com

Well I am happy to report that we are all at home safe and sound. Of course, that is after a very eventful day!

It took me most of the morning to hunt down Ally's one doctor to find out if she would finally get to come home. Thankfully he said yes so my dad and I headed down to duPont to pick Ally up. Luckily Cheryl was taking care of Ally so she was very entertained and not missing me at all. However, when we got there and told her she was going home she wanted out of that room. Everyone that came in she said "bye-bye" to and when she wasn't saying goodbye she was saying "go"!

We actually made it out of the hospital, discharge papers and all, in record time and we were headed home around 2pm. I was beginning to think that we would be home early enough for me to be able to actually cook dinner. To my surprise luck would change those plans. As we were exiting RT. 422 and yielding onto Township Line Rd in Royersford, WHAM, we were rear ended!

Thankfully we were all fine and Ally even slept through the whole incident. The other driver had a lot of damage and was unable to drive his car. We have a good amount of damage and we can't open the rear door but the car was fine to drive. I am telling you I think there is never a dull moment in our lives anymore. We still managed to make it home by 4:30 but making dinner was out of the question!

Ally was excited to be home and played the whole evening and wasn't very happy when we told her it was bedtime. She will complete the rest of her IV antibiotics at home. They will do a blood culture next week once the antibiotics are complete. She also will have a checkup next week and than the following week we head to Pittsburgh for a checkup.

Hopefully the rest of the week will go smoothly and than we will update next week.

Take care,
Jill

P.S. There are only a handful of tickets left for the Beef and Beer this Saturday night. If you would like to go please call Mary Kay at 610-367-6693.

Unfortunatley Ally is still in the hospital and we just got the bad news that she will be in for probably another day or two at least.

On Monday Ally had a positive blood culture and they have been unable to identify the specific bacterial organism. Therefore they are not sure if she is taking the correct antibiotics to kill the bacteria. However, she had been having negaitve blood cultures, at least up until this morning when she had another positive culture. So more than likely the antibiotics are not working. This means staying until the organism from the new blood culture is identified.

It is very difficult to be back in the hospital after having such a long spell at home. I think the week has been especially hard on Ashley, she seems completely wiped out and she told me she just wants to go home!

Please pray that they identify this organism quickly and that there is a chance we could get out of here tomorrow or Saturday.

Thanks, Jill

Well, with no nurse Saturday night, everything of course on top of it made for yet another fun night. At 2 a.m. Sunday morning Ally started to run a temp of 102 degrees. This meant a trip to duPont Sunday morning of course.

As of right now, Ally is back in the PICU at duPont. She has another line infection in her new central line from last Sunday. She will remain here until she has a culture that is negative, and no temp. Her spirits are as always great. She is happy and loves seeing all the people. As for us, we are exhausted from all these long days and nights. The light at the end of the tunnel is getting further away, instead of closer!

We will update again soon.

Ally made a schedule trip on Thursday to have some additional tests done. One was for cystic fibrosis, and the others were for food allergies. We found out today some of those results.

Ally's one blood culture came back positive for yet another infection. Since she is acting fine, we will do nothing until her body tells us too. We also found out that Ally has food allergies to "wheat", "egg", "milk", and "peanuts". As if things could not get any more complicated, now we need to see an allergist! Yeah!!

I updated with some new snow day photos, and included links on the homepage to the new Boyertown Times News article, and the WZARTV link to the breakfast photos and video (Ally's info is on left side of WZAR's site). Enjoy.

Today it is one year since has Ally received her new liver and although we rejoice today another family is still grieving. Please say a prayer today for Ally's donor family and for all the other families who have made the choice to donate life.

Well Ally is back athome again and we are all trying to make up from our sleep deprivation. We got home Sunday night around 8pm and Ally had her new central line. Of course, we got a call to say we would not have a night nurse due to the icy road conditions. Anyway I forced Shane to take off work Monday I just couldn't see how he would make it for eleven hours in front of a computer on less than eight hours of sleep in 72 hours. I went to work Monday morning but only till noon. Ashley went to her Gram's in the morning so he could sleep and I got to nap in the afternoon. After all of that we enjoyed some play time in the snow. Ashley loved it and Ally hated it!

Ally has been well since being home. The docs were not concerned about the culture that was positive because it was taken from her skin and not necessarily a sterile site. The blood culture that was taken Sunday night was negative. However, when they remove the central line they usually send the tip of it for a culture and that of course was positive. As of now they are not planning on treating her with antibiotics unless she starts to act sick. Her new line is on the opposite side of her chest and since the blood culture was negative they are hoping that things will be okay. We have appointments down at duPont tomorrow so if things change they will begin antibiotics there and we can do the rest at home.

We took some pictures of the girls in the snow so Shane will have to put them up later this week. Thanks again to everyone who turned out to support us at the Breakfast last week. As special thanks to all the people who had volunteered to help I was amazed how smoothly everything ran!

Take care,
Jill

Fundraiser Info:

Beef and Beer Saturday March 4th at Keystone Fire Hall in Boyertown. Tickets are $20 each and should be purchsed in advance. DJ is Bruce Miller. If you would like tickets please call Mary Kay @ 610-367-6693 or LuAnn @ 610-367-0363. Tickets can also be purchsed at Bause's Super Drugstore in Boyertown. You can also email us for ticket purchasing and further info.

Longenberger Basket Calendars on sale now for the month of April. The calendars are $10 each or three for $25. A basket is given away each day. the drawing follows the PA daily number drawn at 7pm daily. For calendar sales call Mary Kay @610-367-6693 or LuAnn @ 610-367-0363. You can also email us for calendar purchasing and for further info.

Just as we should of guessed, Ally is currently in the PICU unit at duPont. Last night as Jill was trying to flush Ally's central line in order to connect her TPN, a clot in the tubing formed, causing nothing to be able to be flushed. We called the hospital, and they told us to go to Pottstown hospital where the duPont transport team would meet us to bring Ally to DE.

We left home at 10:30 p.m. and arrived at Pottstown at 11. Nothing like driving in a blizzard, with your child having a clot in her central line!! Not sure if this week could get any better.? I guess it beats having to drive to Pittsburgh on a night like last night.

After being at Pottstown for an hour we decided not to wait for a transport team, and drove to duPont ourselves. Pottstown turned out to be a big waste of time. Doctors there are never sure what to make of Ally when they see her.

We arrived at dupont at 1:30 a.m. We spent the next 4 hours in the ER. At about 5:30 a.m. Ally finally got into a room in the PICU.

Once again another spleepless night to finish off a sleepless week. Ovenight while transporting Ally she also had some strange fluid around where her central line enters her chest. They cultured it, and of course grew gram negative rods. As of now we are waiting until about 1 p.m. when Ally will go into the ER to have a new central line placed.

Hopefully later today we will be allowed to come home.

Thank you to everyone who took the time out of their day to spend a few hours with us at the breakfast. We had a great time and appreciate all the support shown towards our family and Ally.

We will update again soon.

Surprise, surprise, is what we had in store for us this morning at 2:45 a.m. We were awaking by Ally's nurse only to find out that her central line in her chest had exploded. Why? Who knows. Mostly I'm sure it's because we made plans for Ally to attend her breakfast later this morning, and her body had plans of its own. Needless to say Ally is currently at duPont, where a surgical team will hopefully attempt to repair the line. If this all goes well, Ally should still be able to make a small appearance at breakfast this morning.

We should of known this week was going to continue to be a week without sleep. With not having night nursing 2 nights this week, 3 hours sleep last night, and I'm pretty sure with the snow storm that is to arrive tonight, we will have no nursing, why not just finish off the week with a few more nights of no sleep!!

We will update again with how things have turned out with both the central line and the breakfast at church this morning.

Sounds like the snow storm will hold off for just enough time, to still have Ally's breakfast. We hope to see many of you there.

If you need the address to the church, it is:

St. John's Evangelical Lutheran Church
45 North Reading Avenue.
Boyertown, PA 19512

We still plan to have Ally attend the breakfast sometime in the later morning hours. Also if you have not yet seen the article, we did an interview with the Boyertown Times last week which is featured in this weeks paper in the Neighbors section.

Hope to see everyone tomorrow!!

Well Jill spoke too soon Monday morning. As usual, Ally had her own plans on what she was going to do yesterday.

Ally's feeding tube came out again yesterday, causing Jill and the nurse to make yet another trip to duPont to have it placed. If this keeps happening we may have to make a decision on what we want to do with keeping the tube in place. Since Ally is growing and becoming stronger, its getting harder for us to keep her from pulling at her lines and tubes. All of this is going to take time and patience to help her learn not to touch and pull on things attached to her. Easier said than done, trust me.

I went ahead and added some new photos of Ally's birthday parties this past weekend. She was a little unsure of the whole candle lighting and singing, as you can see her reaction in the photos. Not many smiles unfortunately.

Its hard to believe our little girl is two. It also amazes me to think back and realize just how hard we all worked, and how hard Ally fought to accomplish this milestone in her life.

This past weekend I took some time to organize all my home video footage of girls over these past two years. I couldn't help but wonder where all the time went. I watched some of our days back at Bryn Mawr hospital and watched Ally fight through some difficult times. As difficult as it was to watch her be so sick, it reminded me that even though it was two very long years of struggles, I still remember each and every day. Why? Because we changed the way we approach each day, stopping to enjoy every little moment, whether good or bad. Thinking back I would change nothing. Well . . . except for Ally to be healthy of course.

These two years have changed our family forever. We have had so many opportunities to learn life's lessons that I think we can only be thankful for what we have been given, two happy little girls! These days ahead of our family will most likely be the most difficult, but I now know, we can make it through any trial put before us, pulling together as a family.

Thank you to everyone for all that you have done to help Ally make it to her 2nd birthday. Whether you prayed for her, contributed to her fund, cared for when she was sick, or heck, if you even gave her some CPR to revive her when she was a nice shade of blue (thanks Karen!), I know she thanks you all. To reach this milestone took a whole town, a few hundred nurses and doctors, and grandparents who stuck with us everyday!
To all of you reading this... thank you for the part in which you helped Ally reach her 2nd birthday!!

Shane

Yeah, we beat our record!!! Last Thursday Ally officially beat her six week record of being home from the hospital. Up until last week that had been our longest spell home, along with a couple of four week and numerous two week spells. Of course we did still make two trips to duPont last week.

Monday morning Ally's G-J tube had come out so we made the trip to duPont to have it replaced. So, imagine my surprised when I looked in her bag Wednesday morning and saw that the tube was out again. Again we went back to duPont (both appointments weren't until late afternoon, so wwe got stuck in rush hour traffic too!) Thankfully Ally's tube has remained in since Wednesday, of course I am following her around everywhere and check it every two minutes!

We had a great weekend, with two birthday parties for Ally. Our family is a little too big to have everyone in the house at once so we split it between my family and Shane's family. Ally enjoyed herself and even managed to open a present or two by herself before Ashley took over. She also really loves seeing her cousins so that was nice too. I will try to have Shane put up some pictures one night this week.

The beef and beer tickets has been printed and are available. The event takes place on Saturday, March 4th from 6pm-11pm at Keystone Fire Hall. Tickets are $20 per person. If you would like tickets the can be purchased at Bause's Super Drugstore in Boyertown. You can also call Mary Kay Heimbach @ 610-367-6692 or LuAnn Reichart @ 610-367-0363, or you can email us at aajsheintz@yahoo.com

Take care, and hopefully this week will be less eventful. Don't forget Ally's breakfast is this coming Saturday February 11th at St. John's Church in Boyertown. Breakfast is served from 7-noon. We will be having pancakes, french toast, sausage, and scrapple. Plus juices, milk, coffee, tea, and hot chocolate. Adults are $6 and under 12 and senior citizens are $4. Hope to see you there, Ally will be coming by sometime that morning.

Jill