Ally Heintz

Today at 2p.m transplant called from Pittsburgh to say they were looking for us because they had Ally's organs available!!

We were excited and scared, but after talking with them they said they had tried calling our cell phones but got no answer. The reason why they got no answer was because they were calling our old cell numbers from 12 months ago! Why? Good question, especially since we had given our cell numbers again to Pittsburgh this past Friday!

Long story short, transplant first called another child for transplant and got no answer, so then they called us, no answer (wrong numbers) then the other child's parents got the message and accepted the organs, leaving us with alot of questions!

I guess the good news is now, we should be first on the list!!! Talk about getting your heart rate up this afternoon. We never really stressed, its just that this afternoon left you with alot of mixed emotions. We want this transplant to happen, and it needs to happen, but its a scary place to be heading with no warning. So today is our sign to get ready!!! We're next!!!

Please pray for the child who lost their life today, their family in making the right decision to donate life, and pray for the child who is now accepting those organs as I write to live a much healthier life thanks to the kindness of others! Continue to keep Ally in your prayers and that her turn happens real soon!!

Nothing but good times this weekend to report. We had a great few days at home. You could tell we have been locked up for most of the year when you here all the things we were doing.

Saturday, Ashley had her first dance recital! It was great to see her on stage doing what she enjoys most, dancing in circles! We are so proud of her and all she is able to handle as a four year old! To see her on stage with no fear was amazing!

Also on Saturday, we decided to buy Ally a "big girl bed" and put Ashley and Ally in the same room. Not sure how this will work, because tonight is the first night, but without night nursing we need Ally upstairs with us. The last two nights Ally has not slept very well. She wakes up about every hour or so screaming. Getting her off her hospital stay hours of staying up all night will be tough, but hopefully within a week she can sleep through the night again.

Sunday we went to a trout rodeo, and Ashley caught one fish. Missed a few others, but that was daddy's fault. Ashley did however help Daddy clean and gut the fish. That was a shocker!! Later Sunday afternoon we had cousin Luke's birthday party to attend. The girls had a great time playing on the moon bounce and just being out with other kids.

Be sure to check out the new photos added from this weekend. We will update again with any changes to Ally. Continue to pray for Ally to stay healthy and home, and for all our friends at duPont!

Tonight will be another busy night for our family of packing. However this time it will be to come home. That's right...we will be coming home again with the hope we can stay home for a little while. We know our days at home will be minimal, but we can hope for a few.

Ally is doing much better. She had a new central line placed in her chest late last evening. Since she has been fine for the last 24 hours, we are able to leave the hospital. Ally's poor wrists and feet are badly bruised from all the sticks from placing temporary lines, but other than that she looks to be ok for now.

We talked again to transplant today about what is taking Georgetown so long to consult with us, and it seems that they are busy. My response...so are we, and our family is the one's with the burden of watching our child die! There's no excuse in the world of medicine for not even giving us a call back! We need to list a second time, and if we do not get a response soon, our next move is to Boston. Dealing with insurances and hospital politics is not much fun! All of this causes alot of frustration and stress when people don't understand the importance of time, and how little we have. Each day that goes by without a call from transplant, is one more day closer to losing Ally. We need to do everything in our power to ensure we did everything possible as parents to save Ally's life. I will not sit idle and wait any longer for someone to call me, its time to get things moving, and that is what we will do early next week.

We will update again soon with any changes to Ally's health. Please continue to pray for our friends Gavin, John, and Kierra! Each of them need prayers of strength, guidance, and hope for a better tomorrow! Oh yeah, Ally could use some help from above also ;)

Sorry for the delay in updating about Ally but it has been such a down kind of week.

After a torture session on Monday afternoon Ally's line was finally removed. Ally has never before had a line removed without being sedated and after they way things went Monday probably won't be having one removed again without sedation. Her line had only been in about 6-7 weeks but it was stuck and they had to make a small incision to remove it. This of course came after the morning torture session of placing a peripheral IV. Ally is not an easy stick so this took two attempts. Needless to say it is not Thursday morning and Ally will shortly be getting yet another IV because the one placed early this morning has already failed. This makes four IVs in less than four days.

Since having her line pulled Ally has had negative blood cultures which is fantastic. Unfortunatley she has still been having significant fevers. We are all very concerned by this because we have no cause for the fevers and this is exactly what she did two months ago when she became so sick. Her spirits have been good so I am holding on to that. On top of all of this Ashley had a stomach virus over the weekend and I was lucky enough to have it all day yesterday. Sometimes I think the big black cloud that follows us around is trying to consume us!

Ally is supposed to go to the OR tomorrow for a new central line. The docs are a little hesitant about placing a new line while she is still having fevers but since they have tested her for everything and everything is negative they decided to go through with placing it. Ally really can't be without her line much longer becasue her peripheral access is so poor and she can not receive the amount of nutrition that she needs.

No word yet from Georgetown, really you don't even want to get me started on that subject. Pittsburgh has been keeping pretty close tabs on Ally through transplant here at duPont.

I have never really been able to pray for Ally to receive her organs because I know the loss that it means to someone else's family. So, I typically just pray that God helps Ally to be healthy. However, over the last few weeks I find myself often thinking about praying for Ally to receive her organs and then maybe my prayers for her to be healty could be answered.

Jill

Just wanted everyone to know we won the airline tickets and share the letter below from the Gift of Life. Thanks again to everyone who contributed or participated in this year's event! The hope is that we can continue this annually, growing and setting our goals higher. Thanks again. Letter is below:

Dear Shane:

On behalf of Gift of Life Donor Program, thank you and your family/friends for raising over $24,000 for the Dash for Organ Donor Awareness. Your family is an inspiration to so many people and we thank you for your commitment to organ and tissue donation, especially during this hard time. Ally's story has touched so many lives and we wish nothing but the best for Ally and your family.

It is no surprise that you are the top fundraiser for the Dash for Organ Donor Awareness and I want to personally congratulate you on a record breaking amount of money fundraised. I have never seen anything like this before in the history of the Dash. Congratulations and thank you for all of your hard work. I will be sending you a package next week with two airline tickets, complimentary of AirTran Airways, in which I hope you and your family will be able to use them to go somewhere special.

This is a very small thank you for all you and your family have done. I just wanted to touch base and let you know to expect the tickets via UPS next week. It was a pleasure to meet you and your team at the Dash.

Again, thank you and best wishes.

Sincerely,

Megan

Mommy,

Ashley said that I had to write a quick message to you to let you know how special you are to both of us. We are two of the luckiest little girls I know to have a Mommy like you!!! Your days are always difficult, filled with things many mothers will never understand. You continue to amaze all of us with your never ending love. I wish our day could of been spent outside the hospital playing and having fun, but somehow we always manage to make our days special just as long as we are together as a family!

One day Mommy when you look back at Ashely and I and see what amazing things you accomplished raising both of us through such difficult times, you will finally relax and enjoy life and all that God has given our family!

Without such a special Mommy like you, our times in the hospital would not be as fun, not only do you care for Ashley and I, but you always find time for others to help them cope with their troubled times as well when their in the hospital. Mommmy I hope your day was filled with joy knowing that we love you forever, not matter what tomorrow brings!!

Happy Mothers day to Mommy and all the mom's reading this update.

Love, Ally

I know this may sound strange but thank God Ally has a line infection. Last night we got a positive read back from Ally's blood culture. Although blood infections used to make us nervous and definitely used to make Ally's docs nervous we are all feeling a little relief about this one. Since Christmas time Ally has been having these episodes of really high fevers but we never find a culprit and yet she has been a lot sicker with all of them than what she ever gets with a line infection. Why that is who knows but at least this time we know what we are treating however I won't be cheering to loudly until we see a negative culture otherwise I'll end up eating my words.

Ally was of course started on IV antibiotics and today she received some blood. She has been very pleasant and playful during the day even while having fevers. She and Ashley have made a new friend on South so Ally has spent most of the day playing with her. Tomorrow I am heading home for a little to try to catch up on some things and to bring Ashley down. Hopefully Ally will get that negative culutre soon and stop having fevers. I am hoping we will get out of here early next week and than can finish up antibiotics at home.

Hope everyone has a nice weekend and a wonderful mother's day.

Jill

Ahhh, the torture continues....after two nights with not much sleep, unpacking everything from the hospital, Ally last night ran a fever. Guess what that means? You guessed right!! Back to the hospital we go this morning!

Well if I were to look at the positives, I guess I could say instead of just 1 night in our home, this time we had 2. On the negative side...well that list could go on forever. I'm telling you, someone really likes to create challenges for our mental and physical well being through all this!

We will update again later with what is going on with Ally.

Ally came home yesterday!!! Now we will see how long it is until we have to return back. We're hoping to stay home for at least a week or two. I guess will see. As soon as Ally arrived home, the first thing she wanted to do was to play on her swing set. She had a blast!!

As far as her health, Ally has been ok. Looking a bit yellowish/green, so that is some concern. Not sure if its her liver or her possibly needing some blood. I guess we will just wait to see how she is the next day or two.

It is so nice to be home...we did not get much sleep last night, maybe 4 hours, because Ally has been waking up every hour wanting "mommy". I think its just a comfort thing she is going through, wanting to know someone is there watching over her. These last few months in the hospital Ally has grown more fearful, and is wanting family to be with her more. So the whole sleeping thing is going to have to be worked on over the next few days. On top of all that it looks like we may not have much nursing help at night...can't blame the nurses, they can't wait around for months on us, and not make a living. So for now we are going to tough out each night ourselves taking care of Ally. At this point we are not interested in having new nurses come into the house, and build yet again more relationships with new people, and hope that we can trust in them to care for Ally.

Please continue to pray for Ally, and that her call from tansplant comes soon.

Ally is doing much better as the days pass along here at duPont. We are getting close to having the smiling and happy Ally back! Currently we are keeping a close eye on Ally's blood pressures, and if they can continue to stay in a normal range, we may be able to go home early this week.

No word from Georgetown yet. The doctors at Georgetown have been reviewing Ally's information and health records this past week, and it should be only a matter of time before we make the trip. I think it is our insurance company that is holding up the process...don't ask me, it's always something to do with paperwork. These people don't care about the time needed to get on a transplant list, their more concerned about how they will get paid!

I'm sure the call to go to Georgetown will be right after we unpack all our things from duPont at home, to only turn around and have to repack and go back south to Washington, D.C. That usually is how our world works. Someone always likes to make us work harder in a day then needed. I often wonder what a day would be like without so many challenges? When your days are filled from morning til night with always being on the go, and many of people around you wanting your attention, you sometimes forget what a normal day is like. Three plus years, with no end insight, creates a focus that is so driven to get through a day, that you really forget about yesterday. Time is going by so fast, yet so slow.

Please pray for Ally, and all the sick children and families in the hospitals that deal everyday with such extreme challenges at watching their kids suffer. No parent should ever have these burdens to face, but if you are so lucky to do so, their is a reason God choose you and your family to walk this path. That I do believe!!

On another note: If you have not noticed, we put some information on Ally's site to let you know about the upcoming Corvettes for Kids fundraiser. Many of you asked why we put some much effort into the Gift of Life event, when all that money was not even going towards Ally's Recovery Fund. Well, the answer to that is because it does support Ally, just in a less direct way.

Corvettes for Kids in a local event held every year that sponsors one child/family in the community that is in need of help. For 2007, Ally will be that spokes child! All proceeds will go to helping Ally and our family with housing and travel expenses, either to Georgetown or Pittsburgh. Please let us know if you are willing to help us make this event the largest Corvettes for Kids show ever!! There are all types of ways you could help. If we put as much effort or more into the event as we did the Gift of Life, we should be able to reach our goal of a successful benefit!

If you would like to help, please email us at aajsheintz@yahoo.com There are plenty of ways to help...selling t-shirts, asking local businesses to advertise or be a sponsor for the event, help with organizing games, donating items for the silent auction, volunteer if you like, any help is always welcomed!!

We will update again soon with any changes to Ally's health, and or Georgetown news.

Ally is still very irritable and pretty much sleeping most of the day. She takes about an hour nap, gets up for an hour or so, then has to lay back down. We think the steriods and naroctics may be causing the huge change in her demeanor. We miss the happy, smiling Ally. The Ally we have now is not so nice. Oh well...we hope to continue to wean the meds so that we get the old Ally back soon!

Yesterday we started the process of sending all of Ally's health records to the University of Georgetown to double list her for transplant. Currently Georgetown does not have any AB blood types on their waiting list. The hope is that we can take a trip to Washington D.C. for a consultation in the next week or so.

We have thought about this decision, and it may be our only hope at saving Ally. Double listing increases the odds of a call coming sooner rather than too late. Time is limited. Very limited! Ally will only continue to get worse from here, not better. In fact, we may not come home from the hospital at all until we get the call. Having said that, times will be tough on all of us, especially Ashley. It's very hard to expalin to her everything we must do in order to get Ally healthy. How we balance life this year remains to be seen. If the call does not happen soon, we will lose the battle we fought for so long. Please pray that we can get to Georgetown, or that the call from Transplant comes very soon!!!!

Reminder:
The next blood drive set up in honor of Ally will be on Monday April 30th at JDR Fixtures Inc., located at 232 Shoemaker Road in Pottstown, Pa 19464. The blood drive will from 7 a.m. to 5:30 p.m. To schedule an appointment call Tracy Diachynsky at 610-323-6599.

I know, I know, you all have been waiting patiently or maybe some of you impatiently for an update. Unfortunately, Ally has not been giving us much free time to update in the past few days.

Ally has not had a temp since Saturday morning which is wondeful and all of her culutres have remained negative so we at least know we are not headed back into septic shock. Unfortunatley like the start of the last infection we still do not know where it is coming from. I think starting the steroids immediately and stopping her immunosuppression meds helped tremendously. Unfortunately the extremely high doses of steroids have turned our sweet, loving, laid back child into a behavoiral nightmare! However, that said I will gladly take this nightmare over the nightmare of septic shock.

Ally has episodes were she is content but far from pleasant. Most of her time awake is spent crying, screaming, yelling "no" or throwing things. Put it this way Ally's behavoir has been emotionally and physically draining for me to watch and just like the withdrawl there is nothing I can do. Also since she has been so aggitated they have had to increase her narcotics which means they will have to be weaned again. However she is on fairly low doses of narcotics and hopefully will not have to struggle with withdrawl symptoms again.

Otherwise Ally is pretty stable. She did need blood products over the weekend (FFP and platelets). She has been off of the nasal canula and although her respiratory rate is still high she is maintaining her oxygen saturation. She has also gone from not being able to maintain her blood pressures to excessively high blood pressures. This is probably due in part to her steroid dosage. They will be starting to wean her steroids today so hopefully that will help her BP and her overall temperment.

Hopefully we will be moved back to the floor today. This way Ally will be able to leave her room and that distraction may help her to be happier!

Thank you to everyone who supported us in the Dash for organ donor awareness. We had a great day and a nice escape from the hospital. Unfortunately since we had so many people Shane and I felt like we didn't really get the chance to talk to anyone that much. We really want to let everyone know how much the day meant to us. Also thank you to everyone who sent in a donation to support our team. The link is still set up on Ally's homepage if you want to view our total amount raised. Our team reached our goal by exceeding $20,000!!!

Also I want to say a special thank you to the members on our team who were living donors, organ and tissue donors family members or transplant recipients. Thank you to Ginny and Nikki, for the memory of Chad's gift. Thank to Melissa and her gift to her mother. Thank you to Rick and his gift to his sister Roxanne. Thank you to Paul and the gift of life he was given by his kidney donor. Finally thank you to Ally's donor family. I remember your child and the loss you are still experiencing, everyday when I look at the gift of life that has been given to Ally.

Remember to sign up to be an organ donor and discuss your wishes with your family. You can also sign up to help someone now by giving blood today. The next blood drive set up in honor of Ally will be on Monday April 30th at JDR Fixtures Inc., located at 232 Shoemaker Road in Pottstown, Pa 19464. The blood drive will from 7 a.m. to 5:30 p.m. To schedule an appointment call Tracy Diachynsky at 610-323-6599.

Take care,
Jill

P.S. Don't forget to watch the video of Ally's interview on Fox. The link is at the bottom of Ally's home page.

As Shane stated in yesterday's update Ally was re-admitted to duPont yesterday afternoon. In hindsight I wish I had never brought Ally home (even though it was nice to sleep at home for one night in a six week stretch). I was already concerned about Ally Thursday evening because she was acting so lethargic and was extremely pale. She also had a low grade temp but because they had stopped her narcotics I assummed it was a side effect from the withdrawl. She did go on to have a good night's sleep in her own bed and had no fever throughout the night.

Needless, to say yesterday morning she spiked a temp of 103. Of to duPont we went, back to our old room on 3CSouth. IV antibiotics were started and labs and cultures were drawn. Ally's blood pressures were significantly low but not critical so she was given a bolus. She spiked another temp 104.2 and has had a couple of 104 temps since then too. Her respiratory rate was increased but not her work of breathing. She was also extremely tachy and tremorous.

Around midnight the PICU team came up to the floor to see Ally even though an official consult had not been put in. They had heard Ally was back and wanted to see for themselves how she was doing. Obviously they were concerned and do not want to head back down the same road as last time. Dr. Bink decided that it was best to get Ally downstairs to the ICU so she could be monitored more closely and if needed could be given some additional meds or bolus. Always better to air on the side of caution.

For now Ally is resting most of the time. She has on a nasal canula which is helping to keep her oxygen saturation up but her respiratory rate is still about 60-70 breaths a minute. They have also restarted Ally's narcotics just to help keep her comfortable. Her rejection meds have been stopped so that she is not more immunosuppressed and will be better able to fight this infection. She has also been restarted on IV steroids and her blood pressure meds have been stopped due to her low blood pressures.

We are still planning to attend the walk tomorrow. Grandmom has offered to stay with Ally but I will see how Ally is tomorrow. Shane and Ashley will definitely be attending. We are planning to arrive between 8-8:30. I know most of you have gotten your shirts already. For those of you that did not receive one, we will be bringing your shirts along to the walk. As Shane mentioned before we will be in "Green' shirts, so look for our team. Please try to arrive by 9:30 so that we can have the team picture taken around that time.

Online registration for the walk is closed. You may still come to the walk and register the mornig of the walk. Online donations received today will count towards are team. We are about $900 away from reaching our money raising goal which is just awesome!

I know Shane informed everyone in the last update about Ally's story on Fox 29 news. The story will air tonight on their 10 o"clock news. However there is a Nascar Race on that channel tonight so the news will probably be delayed a little. We will add their link to our site and you will also be able to view the video there.

Please keep Ally in your prayers. We are so concerned that she may be heading down the same infection route as she was six weeks ago. Please pray for her body's strength so that she is able to fight this infection. Also, please keep Ashley in your prayers. She struggled so much with this last admission. Yesterday it broke my heart to tell her Ally needed to go to the hospital. She was doing anything in her power to will Ally to get better. Not to mention Thursday night she was on top of the world because she was at home and got to play with "her" toys and a take a bath at "her" house. I know most days I worry about Ashley just as much if not more than Ally. I think I feel I should be able to control what is going on with Ashley and how she is feeling but with Ally I know I have no control over the situation.

We are so looking forward to seeing so many of you tomorrow. Thanks to everyone for your support.

Jill

Well, were going back to dupont, in case you didn't read the earlier update. Its always so much fun to spend a day and a half packing, then unpacking, only to repack to go back. Looks like we will spend the next 8 hours in the ER until we can get a room in hospital. Ally will not be at the walk.

Ally came home yesterday. It was a very busy day with packing and unpacking and getting settled again at home. Ally had an Ok night, but this morning is running a fever of 103 degrees. It could mean we will be back at duPont by later today. Please pray that we can stay home, and not need to go back for a while. Ashley and Ally were both upset hearing that we may need to go back. Both of them cried and said they wanted to stay home. Ally asked "why do I have a fever"...she of all people wants to stay at home. Ashley is being super sweet to Ally, taking care of her by rubbing her back, letting her have any toy she wants, anything to help keep her sister home. It's really ####### all of us when we go through these times of just wanting to be home. I guess we will see what happens in the next hour of so.

So that everyone knows, Wednesday we did a FOX 29 news interview that will be airing Saturday night at 10 o'clock. We did this to help promote the Gift of Life and organ donor awareness. FOX will also cover our team on Sunday. If you miss the segment, we will put a link to the video off of Ally's site later in the week.

As for the walk, we will still be there.

We will be there early at 8:30ish and will be meeting on the Art Museum steps. Look for the green shirts, or our team sign "Allys Angels".

**Also check out the new photos of our last 8 weeks in the hospital.**

Please read if you are on the Ally's Angels Team!

Just some reminders: If you are planning on joining the Gift of Life walk next Sunday with our team, please sign up today! Registeration fee is $30. You have until today to make the team.

Also, if you have not done so, please email t-shirts to aajsheintz@yahoo.com

T-shirts should be distributed later this week after we get the delivering from the printer. If we are unable to see you or someone that knows you before Sunday of the walk, don't panic...we will have your shirt waiting for you when you arrive at the walk/run.

The plan is to meet between 8:30 and 9:45a.m. on the steps of the Philadelphia art museum. We will have a sign with our team name "Allys Angels". You can also look for the green t-shirts (with a team so large I'm sure we will be easy to find!).

A team photograph will be taken between 8:30 and 10:30. Try for 8:30 to 9:45 to be there, so we can take the photo by 10:00. I would love to have everyone included in the photo!!!

Also please remember to bring your own cameras!! After the event we would love for you to email some your own photos to add to Allys site to capture all the great times and moments and share with folks who could not make it.


Event times:


5K run begins. Participants should meet at the steps of the Philadelphia Art Museum at 9:45 am.

10K run begins. Participants should meet at the front of the Philadelphia Art Museum at 10 am.

3K walk begins. Participants should meet at the steps of the Philadelphia Art Museum at 10:45 am.

Awards will be given to the top three male and female 5K and 10K runners in the following age categories: under 16, 16-19, 20-29, 30-39, 40-49, 50-59, 60-69, 70+. An award will also be given to the top male and female 5K and 10K runners.

This is a rain or shine event!!! We will be there no matter what!!

We are still on track to come home tomorrow. Of course we have all of today to get through. We know by now never to get our hopes up until we are actually out the doors of duPont!

In case you have not seen the race to be top fundraiser and team has tightened up a bit and we are coming down to the last days of fundraising for the Gift of Life. Every dollar counts, so if you can and have not done so, please think about making a contribution to the Gift of Life via the link on Allys homepage. Also if you have time please email the Team link, (or if your on the team the link to your contribution page) to all your friends and family asking them to support you and the Gift of Life help save lives. I know I continue to push the importance of this event, and the reason is that this organization will ultimately save Ally's life!!!

I'm sure you think that some of these updates all I talk about is beating the competiton in the fundraising event...and sure we all like to win, but the real prize in all of this is seeing the overwhelming support from our family and friends and all you have given to Ally! Without you we would not have acomplished what we have so far. Even though we may never know, I'm sure we have saved a few lives along the way!! Awesome job team!!!

In the next few days, please take some more time to speard the word and continue to share Ally's story to raise the awareness needed to save more lives. Too many people are waiting for transplants, and dying everyday because our communities are not educated enough to make the right decision at the most difficult time in life. The Gift of Life and you can make all the difference at letting people know just how important it is to be an organ and blood donor. Yes, I know you have it on your drivers license saying "organ donor", but when you die, you don't make the decision to give life, your family will. Take time this week and discuss with your family your wishes, so when the time does come, your wishes are carried out!!

Thank you and see you Sunday!


Please read if you are on the Ally's Angels Team!

Just some reminders: If you are planning on joining the Gift of Life walk next Sunday with our team, please sign up today! Registeration fee is $30. You have until Friday to make the team.

Also, if you have not done so, please email t-shirts to aajsheintz@yahoo.com

T-shirts should be distributed later this week after we get the delivering from the printer. If we are unable to see you or someone that knows you before Sunday of the walk, don't panic...we will have your shirt waiting for you when you arrive at the walk/run.

The plan is to meet between 8:30 and 9:30a.m. on the steps of the Philadelphia art museum. We will have a sign with our team name "Allys Angels". You can also look for the green t-shirts (with a team so large I'm sure we will be easy to find!).

A team photograph will be taken between 8:30 and 10:30. Try for 8:30 to 9:30 to be there, so we can take the photo by 9:45. I would love to have everyone included in the photo!!!

Also please remember to bring your own cameras!! After the event we would love for you to email some your own photos to add to Allys site to capture all the great times and moments and share with folks who could not make it.


Event times:


5K run begins. Participants should meet at the steps of the Philadelphia Art Museum at 9:45 am.

10K run begins. Participants should meet at the front of the Philadelphia Art Museum at 10 am.

3K walk begins. Participants should meet at the steps of the Philadelphia Art Museum at 10:45 am.

Awards will be given to the top three male and female 5K and 10K runners in the following age categories: under 16, 16-19, 20-29, 30-39, 40-49, 50-59, 60-69, 70+. An award will also be given to the top male and female 5K and 10K runners.

This is a rain or shine event!!! We will be there no matter what!!

Not too much to report from this weekend.

Today we are looking at making some weans to Ally's narcotics. If we can continue to wean and Ally does well, we should be out of here by end of week! Ally is still having withdraw symptoms, such as tremors and trouble sleeping, but for the most part is happy. She also has her days and nights mixed up and is sleeping much of the morning away today.


Please read if you are on the Ally's Angels Team!


Just some reminders: If you are planning on joining the Gift of Life walk next Sunday with our team, please sign up today! After today, the registeration fee goes up to $30 instead of $25.

Also, if you have not done so, please email t-shirts to aajsheintz@yahoo.com

T-shirts should be distributed later this week after we get the delivering from the printer. If we are unable to see you or someone that knows you before Sunday of the walk, don't panic...we will have your shirt waiting for you when you arrive at the walk/run.

The plan is to meet between 8:30 and 9:00a.m. on the steps of the Philadelphia art museum. We will have a sign with our team name "Allys Angels". You can also look for the green t-shirts (with a team so large I'm sure we will be easy to find!).

A team photograph will be taken between 8:30 and 10:30. Try for 8:30 to 9:00 to be there, so we can take the photo by 9:15. I would love to have everyone included in the photo!!!

Also please remember to bring your own cameras!! After the event we would love for you to email some your own photos to add to Allys site to capture all the great times and moments and share with folks who could not make it.


Event times:


5K run begins. Participants should meet at the steps of the Philadelphia Art Museum at 9:45 am.

10K run begins. Participants should meet at the front of the Philadelphia Art Museum at 10 am.

3K walk begins. Participants should meet at the steps of the Philadelphia Art Museum at 10:45 am.

Awards will be given to the top three male and female 5K and 10K runners in the following age categories: under 16, 16-19, 20-29, 30-39, 40-49, 50-59, 60-69, 70+. An award will also be given to the top male and female 5K and 10K runners.

This is a rain or shine event!!! We will be there no matter what!!


Don't forget on Monday there will be another blood drive in honor of me. This drive will be at New Hanover United Methodist Church on Swamp Pike in Gilbertsville. For appointments call Sue or Harvery Hohl at 610-385-6671 or Don Green 484-945-0232. The drive will be from 2-8pm and I am sure walk ins are welcome too!


Thanks to everyone for your support and prayers!
Shane, Jill, Ashley, and Ally!

It's me again, Ally! Guess what? I was able to leave the intensive care unit yesterday to move up to a regular hospital room. You know what that means! I could be going home by the middle of next week!!! I can't wait to go home.

After settling into my new room yesterday, I quickly remembered that being on the floor, means being able to go to the playroom. We spent about an hour there last night, mommy, daddy, Ashley and I. While there it was obvious that my legs have lost alot of strength. I wasn't very good at walking, so it looks like I will need plenty of PT when I get home.

The next few days I need to remain stable, and continue to get better. It's been a tough few weeks for me and my family, but I still am fighting as hard as I can to keep pressing on.

Mommy and Daddy have keep telling me that if we get out of duPont soon, I may be able to go to the Gift of Life walk!!! I can't wait. Last year we had a blast, and by looking at what you have done so far to raise money to support the Gift of Life is amazing. Keep up the great work!!!

Daddy's not sure if we will beat Penn Transplant, but I know in my heart that we can continue to spread the word and let people know just how important this fundraiser is. Even though the money does not go directly to me, you are helping raise the awareness of our community of the needs that could save my life or another persons. Please continue to ask your neighbors, family, and friends to help me and the team be #1!! Every dollar counts!! If people do not want to contribute via the web and the link to our team and would rather send a check; please have them make the check out to the Transplant Foundation, and include a note that they would like to either sponsor someone on the team list or Shane Heintz.
Checks can be mailed to:

Gift of Life Donor Program
401 N. 3rd St.
Philadelphia, PA 19123-4101

Money needs to be to the Gift of Life by next Friday 4/20. All contributions are tax deductible!!

Don't forget on Monday there will be another blood drive in honor of me. This drive will be at New Hanover United Methodist Church on Swamp Pike in Gilbertsville. For appointments call Sue or Harvery Hohl at 610-385-6671 or Don Green 484-945-0232. The drive will be from 2-8pm and I am sure walk ins are welcome too!

Well, got to go...my gram should be here soon to visit. I look forward to seeing and meeting some of you for the first time at the wallk!!! LOVE, ALLY

Hi everyone, I thought I would give Mommy and Daddy a break and write this update on my own. I am doing okay today, I had a rough night because I had a hard time getting settled and falling asleep. So needless to say I was not all that pleasant this morning. Mommy says she will let me sleep for a little but then I have to get up for PT and OT (my therapist made me work hard yesterday so maybe I'll just try to sleep through it today!)

Yesterday the docs took my bi-pap machine away and I was breathing so well I didn't even need my nasal canula. They didn't wean any of my narcotics yesterday and I am thinking they won't wean them today either since I have been having a lot of tremors. They did increase my rejection meds because my liver numbers have not settled down yet.

I wanted to thank everyone for participating in the walk. A lot of my nurses signed up too so it will be nice to see them outside of the hospital (if they ever let me out of here). Mommy and Daddy told me how much money has been raised and how many people are on my team. This makes me feel so good because I know so many people love me. It also gives me a chance to promote organ donation and kind of helps me to pay back some of the gift of life that was given to me. I was very lucky to receive my liver so quickly but not everyone is so lucky. Everyday about 18 people die waiting for organ transplants due to the shortage of donated organs and about every 12 minutes a name is added to the national transplant waiting list. I have now been waiting almost 16 months for my multi-visceral transplant.

Today my grandmom is coming to stay with me while Mommy goes home to see my new cousin. Yesterday Mommy showed me some pictures of baby Peyton and she is very cute. Mommy still thinks that one day Daddy will let her have another baby like that and Peyton is definitely cute enough to convince anyone to try.

Also and this is very important, please say some prayers for my buddy Andrew up the hall from me. Although I have never met hime Mommy and Daddy told me about him. It sounds like we were maybe cast from a similiar mold because we are both fighters. Today Andrew is having lots of tests and a trip to the OR. His dad said that Andrew needs to bat 1000 today so that is what I am praying for.

Take care, I hope you liked my update, maybe Mommy and Daddy will let me write more often.

Love,
Ally

I hope everyone had a nice Easter holiday. The child life group here helped the Easter Bunny deliver baskets to all the rooms and big sis Ashley got a special basket too! We are now over flowing with candy and all kinds of other goodies.

Having Christmas and Easter in the hospital seems so bizarre. I have missed my weekly trips to church and had so hoped to get home last week for the holiday but with Ally's respiratory status and withdrawl I was too worried to leave. It just feels like some of the meaning of the holidays gets lost in the hospital. Not to mention they no longer have a chaplain in the hospital so they no longer have regular services.

Well that is enough complaining. We did manage to get some decent pictures of the girls. Ally had her bi-pap machine off for most of the day yesterday so we could actually see her face. The girls enjoyed their Easter baskets and got to play together in Ally's bed. Gram and Pop and Grandmom and Pop all came down to visit and spend a little of the holidays with us. Shane and I would be lost with out our parents and all the support they have given to us and to our girls. We also got a special delivered Easter ham which was delicous and the nurses enjoyed too!

Ashley got to do two egg hunts this weekend. On Saturday all of her cousins (minus the new baby) came down to the hospital and we set up an egg hunt on the playground. The all seemed to have a lot of fun and Shane and I were grateful to all of our siblings and theire families for giving us such a wonderful day. Yesterday Ashley ventured over to the Ronald McDonald House for an egg hunt. There was only three kids there for the hunt so needless to say she found a lot of eggs.

Ally's respiratory status has improved greatly since last week and they are now going to try to wean the narcotics again. The docs are in agreement for a very slow wean and they will probably only go down about every other day. Her blood pressures have been much better and today they will try to switch her one BP med from IV to her g-tube. She is still on a lot of BP meds and still needs to be monitored closely for all of the meds and sedation wean so for now we will be staying in the PICU. The docs here in the PICU are a little possessive of Ally and said they will not be sending her up to the floor until she is just about ready to go home.

Thanks to everyone who attended the blood drive on Saturday. The next blood drive will be next Monday April 16th at New Hanover United Methodist Church on Swamp Pike in Gilbertsville. The drive will be from 2pm-8pm. To set up an appointment contact Sue or Harvey Hohl at 610-385-6671 or Don Green at 484-945-0232. Another blood drive has been set up at JDR Fixtures locate at 232 Shoemaker Road in Pottstown, PA. This blood drive will be on Monday April 30th from 7am-5:30pm. To schedule an appointment for this drive please contact Tracy Diachynsky at 610-323-6599 or email her at tracyd@jdrfixtures.com.

Please continue to pray for all the kids here at the hospital, especially the children in the PICU. There have been a couple of codes in the unit over the past week. I talked to the one nurse yesterday who said they are using the dialysis circuit again (this is not a typical dialysis set up that is used with kidney disease but instead it is used in people who are starting to go into organ failure). The nurse told me that in 2006 they used the circuit four times and this year they have already used it seven (maybe I switched those numbers but, put it this way there have been a lot of sick kids lately). Also please pray for the staff's strength, wisdom, and patience.

Some of our regular website readers have probably been wondering about the messages we have been receiving from the McDonough family. Andrew McDonough is a patient two rooms up from us. Please pray for Andrew's eyes this week. Wednesday he will probably be making another trip to the OR to check on the infection in his eyes. He and his family so desperately need this to be a successful trip with good news. If you would like to visit Andrew's website go to caringbridge.org and click on visit a site than just type in andrewmcdonough.

Thanks to everyone for everything!
Jill

Ally had a better night than last. She is still on her by-pap machine to assist her breathing. We may try a few hours today off the machine to see how she does. The doctors are making no changes to her medications and thats fine with us. Ally is still struggling through withdraw, but she is resting comfortably this morining. Not much else to report.

Please continue to let friends, family, church, and neighbors know about the Dash for Organ Donor Awareness and how a small contribution could save so many lives, including Allys!! I know its a huge feat, but we would love to show the entire Philadelphia area just how one small young girl such as Ally can have an overwhelming effect at such a great cause. The competition is tough and Penn Transplant the areas largest transplant center is not far behind Allys Angels. Keep up the great work of spreading the word, raising funds, and letting folks know how important the Gift of Life is!! Every dollar counts!! You can visit or contribute to our team off the link on Ally's homepage.

Thanks for the continued support, and for everyone who has contributed of joined the team already!!!

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

Yesterday, turned out to be a very long day but the good news is Ally is tolerating the bi-pap (at least to some extent). Unfortunately she is having a lot of withdrawl symptoms. The docs are going to re-evaluate her meds for the withdrawl later today and possibly start her on methadone.

Watching Ally struggle through the withdrawl symptoms is so difficult. Numerous times yesterday she was awake for long spells and could not get settled. She is constanly itching or picking at something. Then she'll start to cry when you try to keep her from picking. Not to mention she is pretty much having continuos tremors in her extremities. The worst part is when she gets so upset she needs to be suctioned and then the suctioning makes her even more upset so the whole cycle starts all over again. The key is finding another narcotic that can help to minimize the withdrawl symptoms.

Ally's liver numbers took a jump today so they may restart her rejection meds later today or try to hold off till tomorrow. The rejection meds are very ####### her kidneys and they are still recovering from the other week when she was so sick and had to go on dialysis. She has now been off her rejection meds for about 18 days. The docs say that the good thing is when you get very septic the body kind of ignores the liver so they very rarely see rejection at the same time.

For today Ally will probably stay on the bi-pap. Originally the docs thought they could maybe give her some breaks from the machine and use it mostly when she is sleeping. Unfortunately,last night Ally required some additional support from the machine so her settings were increased. This is of course fine with us, we would rather her stay on the bi-pap and not have to work so hard. The docs are on the same page as us and will do whatever it takes to keep her off the vent.

Now,onto the good news. Late last evening Ally and Ashley got a new baby girl cousin. Congratulations Uncle Clint and Aunt Jen! We are so excited the new baby is here and we are hoping Ally has a nice stable weekend so we can escape home and visit.

In case we don't update before Sunday, we hope everyone has a wondeful Easter holiday.

*************************************************

Reminder:


Walk information is below. Let's try and make Ally's Angels the #1 team and if we can, have Shane's contribution area be #1 so that we can win both categories for the top fundraising awards! Top single fundraiser wins two airline tickets this year. Would come in handy for Pittsburgh when Ally gets called for transplant! You can see our progress via the homepage link on the gift of life site. Keep up the great work at raising funds and awareness. Every dollar helps, and just might save a life, even Ally's!!!

If you do not feel comfortable making a donation on the web via a credit card, you can either download the online form and mail your contribution to the Gift of Life, or make a personal check out to Transplant Foundation, and we can then send your money to the Gift of Life for you. Just make sure the check gets to us in the next week.

Remember also, that if you join the team to send us your t-shirt size(s), even childrens, at aajsheintz@yahoo.com Thanks!

If anyone is interested in participating in the Donor Awareness Walk on April 22nd 2007 as a part of the "Ally's Angels" team, below are some details. If you cannot walk and would like to make a general contribution, please visit the general contribution area after you have clicked the link off of Ally's homepage.

*************************************************
Registration is $25 per person. This will entitle you to a FREE Gift of Life Walk t-shirt. Unfortunately they do not have children's sizes.(Children under 5 are free; however, they will not be eligible for a t-shirt). Strollers are permitted for the walk.

Remember that if you join the team to send us you t-shirt size, even children!

To Register: Visit the link off of Ally's homepage. You can join the team or click the general donation tab to Shane's area and make a small contribution there. When you register, they will ask you to do it w/a credit card. After April 16, the registration fee goes up to $30 if you plan on walking.

Walk/Run Details: The walk is a 3K (1.8 miles) walk, everyone needs to meet at the steps of the Philadelphia Art Museum at 10:45 a.m.(rain or shine) on April 22nd. The walk will begin at 11 a.m. There will be an award ceremony & refreshments afterward. You can also decide to join the 5K (3.1 miles) and 10K (6.2 miles)runs.

Sponsors: They would like everyone who walks to make a personal donation or to get sponsors to raise money for the Gift of Life.

Incentives will be given: 100-149 raised - Dash baseball hat; 150-249 raised - Dash bag; 250-349 raised - Dash hooded sweatshirt; 350-499 - Dash jacket; 500+ raised Dash warm-up jacket/pant set. Top fundraiser will receive 2 round-trip tickets from AirTran Airways. To receive an incentive all money must be received by April 22nd.

**********************

How else you can help:
You can add the donor designation to your license at anytime in Pennsylvania and Delaware by visiting www.donors1.org.

The ability to save or enhance the quality of life for patients depends on more families giving consent to organ and tissue donation. Quite simply, to ensure your wishes are fulfilled, the organ donor designation should be added to your drivers license or state ID and also discussed with your family members so they understand your decision. Then, and only then, will more lives be saved and improved through transplantation, which is why education on donation is so important.

Thank you! Please email (aajsheintz@yahoo.com)with any questions of if you are interested in walking.


Take care,
Jill

Well if Tuesday I updated with a happy heart today I am updating with a breaking heart and a worried mind. Ally has had an up and down couple of days. Tuesday night and Wednesday morning she seemed to be tolerating her narcotic wean very well. Unfortunately by later yesterday afternoon Ally was starting to show signs of withdrawl or respiratory distress.

Ally's heart rate became significantly higher and her respiratory rate also increased as the day wore on. Ally had also stopped coughing and was no longer clearing her secretions on her own. The nurses and respiratory therapists deep suctioned her quite a few times throughout the night (this is done by inserting a catheter through her mouth and trying to insert it in her trachea).

By this morning it was obvious that Ally was extremely uncomfortable and working too hard to breathe. The doctors thought it best to place her on a Bi-pap machine (bi-pap is a type of mechanical ventilator that can be used without an endotracheal tube). Bi-pap is not as effective as a ventilator but it does deliver pressurized oxygen and hopefully it will do the job for Ally so that she can stay off of a conventional ventilator.

Please say extra prayers for Ally today. If the bi-pap is not effective Ally will need to be placed back on a ventilator. (Due to Ally's already compromised airway an endotracheal tube could be difficult to place and further trauma to her trachea could lead her back to a trache.)

Ally has now been on the bi-pap machine for about an hour and a half and she seems comfortable. The doctors are also loading her with some Lasix so that she is able to get some of the extra fluid off of her lungs. Ally loves Lasix so while praying do a pee-pee dance too! The biggest challenge with the bi-pap is keeping Ally calm so that she does not fight the machine. It is quite a contraption for a three year old to wear and the more upset she becomes the less effective the machine will be for her lungs.

Please do not think that this update is negative in anyway. I am still very hopeful that Ally will do well on the bi-pap and that this is just a little dip in the roller coaster ride of life with Ally. However, that being said I need to stay realistic and think ahead about what could happen if things do not improve.

I will try to write a short update later this afternoon. Please pray.

Jill

It is with a happy heart that I write today's update. Late last evening Ally was extubated and free of the ventilator!!! The first minutes of extubation are always a hold your breath moment for us and the docs. Ally of course was also upset so that didn't help her breathing. We could hear that her airway was swollen but once we had her calmed down and she had some steroid treatments she was able to relax and breathe better. Ally also did well during the night and right now is still on her nasal cannula with just two liters of oxygen.

Ally continues to amaze us with her strength and determination. The rest of this week the docs will continue to try and improve Ally's breathing with chest PT and extra breathing treatments. She is also having a lot of blood pressure issues so the renal docs are working on solving that problem. She will also start to wean from her narcotics which is always a touchy situation. Ally has become addicted to these narcotics in the past and has had to go through withdrawal like symptoms. These days can be some off the most difficult as a parent. Watching your child struggle through drug withdrawal is something parents of a three year old should not have to think about. Please pray that Ally's wean from the narcotics goes smoothly and that she will not have to suffer from withdrawl.

Shane and I are ecstatic to see that our team is in first place for the donor walk. We have even received emails from other teams commending us on our fundraising for this event. Shane and I are so proud to be the leaders of such an awesome team of people. We will be ordering shirts later this week so if anyone would like one please email us your shirt size. Also, if you are not walking but sent a donation and would like a shirt we will gladly order one for you. Our email is aajsheintz@yahoo.com

Don't forget the upcoming blood drives in honor of Ally. The first one is this coming Saturday April 7th from 8-noon at St.John's Lutheran Church in Boyertown. To schedule an appointment call Carol Meeker at 1-800-486-2566 x125. The second drive will take place on Monday April 16th at New Hanover Uninted Methodist Church located on Swamp Pike in Gilbertsville. This drive will be from 2-8pm and for appointments you can contact Sue or Harvey Hohl at 610-385-6671 or Don Green at 484-945-0232. A third drive will be taking place on Monday April 30th at JDR fixtures in Pottstown. I will be posting more info on this drive later this week.

Thanks again for your support. I know we are always saying thank you but that is because we could never thank everyone enough!

Take care,
Jill

Ally has remained stable throughout the weekend. She has been awake often, and wanting to watch alot of TV. Her first smile came yesterday when she was watching her favorite movie "Cars". She really likes Mater the tow truck, and after a few scenes of watching him, she gave a big smile. That made the weekend for us. Only Ally would give such a huge smile with a breathing tube down her throat!

Ally has been added to tomorrow's OR schedule for a central line placement. No one has decided if we should work on fixing the g-tube site yet or not. Please say a few extra prayers that this trip to the OR goes smoothly, and Ally recovers easily.

As a reminder, please think about making a small donation or joining our team this year for the Organ Donor Awareness walk. Your efforts can help the Gift of Life continue their educational programs to create awareness on the importance of giving blood and becomimg a organ donor. The information is below. If you donated or signed up already, thank you!!!

Reminder:

If anyone is interested in participating in the Donor Awareness Walk on April 22nd 2007 as a part of the "Ally's Angels" team, below are some details. If you cannot walk and would like to make a general contribution, please visit the general contribution area after you have clicked the link off of Ally's homepage.

*************************************************
Registration is $25 per person. This will entitle you to a FREE Gift of Life Walk t-shirt. Unfortunately they do not have children's sizes.(Children under 5 are free; however, they will not be eligible for a t-shirt). Strollers are permitted for the walk.

Remember that if you join the team to send us you t-shirt size, even children!

To Register: Visit the link off of Ally's homepage. You can join the team or click the general donation tab to Shane's area and make a small contribution there. When you register, they will ask you to do it w/a credit card. After April 16, the registration fee goes up to $30 if you plan on walking.

Walk/Run Details: The walk is a 3K (1.8 miles) walk, everyone needs to meet at the steps of the Philadelphia Art Museum at 10:45 a.m.(rain or shine) on April 22nd. The walk will begin at 11 a.m. There will be an award ceremony & refreshments afterward. You can also decide to join the 5K (3.1 miles) and 10K (6.2 miles)runs.

Sponsors: They would like everyone who walks to make a personal donation or to get sponsors to raise money for the Gift of Life.

Incentives will be given: 100-149 raised - Dash baseball hat; 150-249 raised - Dash bag; 250-349 raised - Dash hooded sweatshirt; 350-499 - Dash jacket; 500+ raised Dash warm-up jacket/pant set. Top fundraiser will receive 2 round-trip tickets from AirTran Airways. To receive an incentive all money must be received by April 22nd.

**********************

How else you can help:
You can add the donor designation to your license at anytime in Pennsylvania and Delaware by visiting www.donors1.org.

The ability to save or enhance the quality of life for patients depends on more families giving consent to organ and tissue donation. Quite simply, to ensure your wishes are fulfilled, the organ donor designation should be added to your drivers license or state ID and also discussed with your family members so they understand your decision. Then, and only then, will more lives be saved and improved through transplantation, which is why education on donation is so important.

Thank you! Please email (aajsheintz@yahoo.com)with any questions of if you are interested in walking.

Sorry for the long delay in updates but thankfully there has not been much to report on the past few days.

Yesterday Ally had her dialysis catheter pulled and thankfully with it out the bleeding has subsided. Unfortunately her need for blood products has not. Since the bleeding has stopped she has not needed as many blood transfusions but she still received platelets about three times yesterday and already she received them twice today. She also received some more IVIG (immun oglobulin) due to the amount of platelets she is receiving.

Yesterday and today Ally has been awake quite a bit. Most of the time she is just quiet awake and enjoys when we read her books or play a video for her. She is still responding appropriately to yes and no questions. It is hard for Shane and I to see her awake because her eyes show the fear that she must be feeling. We can tell she looks scared and sad so that breaks our hearts. On and off she becomes aggitated and begins to cry. Of course you wouldn't know she is crying if it weren't for her face and the tears. The ET tube prevents her from making any sound which also must be a little frightening for her. Right now Shane and I would be happy if she would just sleep because it would be easier for all of us.

The plan right now is to take Ally to the OR early next week (hopefully even Monday). Place a new central line and then get her ready for extubation. As of right now we don't think we will go ahead with any surgery on her stomach. We have dealt with it this long and it doesn't seem to be the source of any infection it just added to the problem a little.

Before I forget, people have been emailing about blood donation and how they can help, well we have the answers. Two blood drives have been set up in honor of Ally. Both drives were coordinated by Miller Keystone. The first drive will be at St. John's Lutheran Church in Boyertown. The drive will take place on Saturday April 7th 8-12. To set up an appointment please contact Carol Meeker at 1-800-486-2566 x125. The second drive will take place at New Hanover United Methodist Church located on Swamp Pike in Gilbertsville. The second drive will be on Monday April 16th from 2-8pm. To set up an appointment contact Sue or Harvey Hohl at 610-385-6671 or Don Green at 484-945-0232. If you have any other questions please feel free to contact Shane or I.

We will update again sometime this weekend. If you don't hear from us you can assume that no news means good news or at least it means no change. Thanks again for all the support.

Jill

Another status quo day for Ally. The docs were able to wean some of Ally's heart meds and some of her ventilator settings. Unfortunately, she has needed platelets 4 times in the past 36 hours and blood 2 times in the past 24 hours. We are not sure why her body is not recovering by now and not starting to make new platelets and new red blood cells.

Speaking of blood, today I contacted Miller Keystone Blood Center which is our local blood center (there is a link off of Ally's website). We informed them that we would like to set up a replacement blood drive to help replenish the blood supply that Ally has been using up. They are working on a date and it could be within the next two week. I will post the date as soon as I have it.

Not much else to report right now which is fine with me.

Take care,
Jill

Today was another good day for Ally! She was awake for a little on and off this morning and afternoon. She is just kind of quiet awake, she is still on a lot of sedation meds. Tonight she is resting very well and her heart rate is nice and low so we know she is comfortable.

Ally has made huge strides from where she was a week ago, but while listening to rounds today I was reminded how sick she still is. Of course, we will only focus on the positive and that is exactly why I should not listen to rounds. The docs present all the best and worst case scenarios for everything during rounds.

Ally has stayed off of the dialysis machine and is really holding her own as far as fluids go. She did receive platelets twice today and blood again tonight so I am hoping she can keep up with the extra fluid volume. She was weighed today and she still is up a little over 2 kilos from when we came in (which is about 4 1/2 pounds). I can't even imaginge how much she weighed last week. Considering for three days she had about a liter and a half of fluid pulled off (which is about three pounds worth of fluid each day).

Since the dialysis has stopped and Ally has had to clear her own fluid she has gotten some fluid on her lungs again. The docs are trying to control this with some other diuretics and by increasing the support she receives from the ventilator. If she continues to produce enough urine then tomorrow they will probably pull the dialysis catheter (one less place to get an infection). Also, tomorrow the docs may restart her rejection meds. She has been off of these for about a week but they can also be very ####### the kidneys so we'll see how her numbers are tomorrow morning.

Shane and I are very excited about all the support we are receiving for Ally's Angels team for the Dash for Donor Awarenss. Ally's social worker from transplant was down today and she said she is jealous (I think last year we had more people than duPont's team so we told her we just may take over their team). Anyhow, Shane and I really enjoy watching the team grow and we are thrilled to see people support such a great cause. One quick note about the walk, kids are welcome in the walk but you don't have to register them. Just make sure you email us t-shirt sizes for everyone that will be there the day of the walk.

Thanks again for keeping us in your prayers. Today I would like you to say a special prayer for all the nurses here at duPont they really are such a special team and it seems like lately they have been run ragged. Not to mention half the PICU nurses are pregnant and I can't imagine the mixed emotions they must feel when caring for such sick children. The worries they have must be ten fold compared to other expecting mothers. Please pray for all of them to have strength and to stay positive.

Take care,
Jill

Another good day for Ally! She is no longer on the dialysis machine, and the amount of meds is decreasing. Her kidney function is getting better, and she is producing much more urine. Ally is still sedated and on the ventilator, and most likely will stay that way until we figure out what tests or procedures she will have done later in the week to get a diagnosis of what caused her to become so sick.

Ally was awake a few times today and was answering "yes" and "no" questions. She was happy and asked to see Ashley. Ashley was doing much better today seeing Ally in better health. Sometimes I think people forget that Ashley has paid a huge price for having to deal with Ally's illness, and that was clear as we watched her this past weekend. Please say a few extra prayers for Ashley as she trys to cope with Ally's illness.

Please, also continue to pray for Ally as she makes her way to becoming more stable with her health these next few days.

Walk information is below. Let's try and make Ally's Angels the #1 team and if we can, have Shane's contribution area be #1 so that we can win both categories for the top fundraising awards! Top single fundraiser wins two airline tickets this year. Would come in handy for Pittsburgh, if you know what we mean! You can see our progress via the homepage link on the gift of life site. Keep up the great work at raising funds and awareness. Every dollar helps, and just might save a life, even Ally's!!!

If you do not feel comfortable making a donation on the web via a credit card, you can either download the online form and mail your contribution to the Gift of Life, or make a personal check out to Shane and Jill Heintz, and we can then send your money to the Gift of Life for you. Just make sure the check gets to us in the next two weeks.

Remember also, that if you join the team to send us your t-shirt size(s), even childrens, at aajsheintz@yahoo.com Thanks!

*************************************************

Reminder:

If anyone is interested in participating in the Donor Awareness Walk on April 22nd 2007 as a part of the "Ally's Angels" team, below are some details. If you cannot walk and would like to make a general contribution, please visit the general contribution area after you have clicked the link off of Ally's homepage.

*************************************************
Registration is $25 per person. This will entitle you to a FREE Gift of Life Walk t-shirt. Unfortunately they do not have children's sizes.(Children under 5 are free; however, they will not be eligible for a t-shirt). Strollers are permitted for the walk.

Remember that if you join the team to send us you t-shirt size, even children!

To Register: Visit the link off of Ally's homepage. You can join the team or click the general donation tab to Shane's area and make a small contribution there. When you register, they will ask you to do it w/a credit card. After April 16, the registration fee goes up to $30 if you plan on walking.

Walk/Run Details: The walk is a 3K (1.8 miles) walk, everyone needs to meet at the steps of the Philadelphia Art Museum at 10:45 a.m.(rain or shine) on April 22nd. The walk will begin at 11 a.m. There will be an award ceremony & refreshments afterward. You can also decide to join the 5K (3.1 miles) and 10K (6.2 miles)runs.

Sponsors: They would like everyone who walks to make a personal donation or to get sponsors to raise money for the Gift of Life.

Incentives will be given: 100-149 raised - Dash baseball hat; 150-249 raised - Dash bag; 250-349 raised - Dash hooded sweatshirt; 350-499 - Dash jacket; 500+ raised Dash warm-up jacket/pant set. Top fundraiser will receive 2 round-trip tickets from AirTran Airways. To receive an incentive all money must be received by April 22nd.

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How else you can help:
You can add the donor designation to your license at anytime in Pennsylvania and Delaware by visiting www.donors1.org.

The ability to save or enhance the quality of life for patients depends on more families giving consent to organ and tissue donation. Quite simply, to ensure your wishes are fulfilled, the organ donor designation should be added to your drivers license or state ID and also discussed with your family members so they understand your decision. Then, and only then, will more lives be saved and improved through transplantation, which is why education on donation is so important.

Thank you! Please email (aajsheintz@yahoo.com)with any questions of if you are interested in walking.

Another fairly stable 24 hour period. Actually it was nice to see that Ally's two nurses were slightly bored this morning.

Ally's clotting factors have finally stabilized so no more plasma exchange for now. Today they have worked on weaning some of her heart and blood pressure meds. They have been up and down so it will be a slow wean. Also they have weaned her oxygen a little and got rid of the nitric that they had been giving her through the vent.

She is still on the dialysis machine and we are not sure when they may stop that. As of now there is no talk of stopping in the next day or so, we'll just wait and see. She is still just having a tiny bit of urine out so keep praying for her kidney function to return to normal.

I think the plan over the next couple of days is to keep getting Ally more stable and wean some of the meds she is on. She may also head to the OR for some tests to see what got her so sick in the first place. The docs are putting in for a referral with a hemotologist and they may aspirate to get a bone marrow sample to look at. Also they had talked of a bronch to getter some deeper lung samples for testing.

Thanks again for all the support, prayers, and food. We couldn't have made it through this past week had it not been for our family, friends, and prayers.

Take care and we'll update tomorrow morning.
Jill

Another long day in the PICU for all of us.

For the most part a fairly quite day with some progress. Ally has lost some more fluid, needed more blood due to some of her line wounds and clotting factors. Her ventilator settings have dropped some, but not much. She is still on the dialysis machine, which had some mechanical issues today, but is back and running now. The doctors thought they could stop her paralytic med today that keeps Ally from moving, bad idea! Ally became very restless and was trying to get up and out of bed. She even opened her eyes a few times, but only for seconds. Needless to say they knocked her out to keep her calm and peaceful. She needs this in order to heal and get better. There is still some concern for her kidneys, and are keeping close measurement on her urine output. We need the next few days to continue to improve so that Ally can maybe get a call from Pittsburgh at a Status one on the transplant list to be transplanted.

Thanks to all our visitors the last few days, and those you have sent gifts, food, prayers, and support! Without your help we would have had a much more difficult weekend. We are looking at a very long and difficult road ahead of us and will take whatever support you can offer. Balancing Ally, Ashley, our jobs, hospital and insurances, and just our daily way of life is very stressing at times. We do our best to remain positive, but sometimes are so exhausted from the day we just need to lean on others. Thank you!!

As long as we have your attention to the site, we will also continue to remind you of the donor walk and the difference you could make by joining our team or just by donating a few dollars to support the Gift of Life. This is extremely important to both Jill and I, and should be to you also.

To see first hand, someone have to come from the Baltimore area to bring blood product to duPont, rather than Philadelphia to give the gift of life to Ally all weekend concerns us. We as an entire community take for granted that blood will be readily available if we would need it. It's just not the case. Through Ally we can make a difference and are shooting to be the leading fundraising team at the Gift of Life walk. Please help if you can. The link is on Ally's homepage to make a donation that is tax deductible!!! Thanks!

Ally has managed to remain in critical but stable condition over the past 24 hours. The docs were able to lower her ventilator setttings more and to decrease some of her heart meds. Yesterday the plasma exchange was put on hold because the docs felt it was more important to keep her on the dialysis machine all day. We think this is why we got behind on Thursday on the fluid removal because during the plasma exchange she is off the dialysis for 4 hours.

Ally was the incredible shrinking baby, Thursday she had puffed up again over night but during the day Friday they pulled off a lot of extra fluid. The docs got a little to aggressive with the dialysis so we had to back off a little but that is helping to keep Ally more stable. Unfortunately she is still barely making any urine so we are a little concerned about her kidney function and how well it will return after we get through all of this. For now that can't be something we worry about though.

The docs may opt to do the plasma exchange today. Ally's clotting factors have been holding were they are at but they are still out of normal range. The good thing is she is now only oozing blood from the dialysis catheter site and her g-tube stoma, and the bleeding there has diminished.

Thanks to all of you for the prayers and words of encouragement for Ally and for the rest of our family. Also thanks for helping to build our team for the donor walk. Shane and I have been keeping track and noticing how many people are signing up. If you have signed up remember to email us your T-shirt size so that we can get you a T-shirt for our team (this is different than the shirt you get for registering for the walk). Our email is aajsheintz@yahoo.com.

Since Ally is looking a little bit better today maybe we will get some pictures and try to post them when we can. Here's praying for a good day!

Jill

Just another quick update to say that things have remained status quo during the night. We made some progress yesterday with the plasma exchange but had some issues transitioning back to the dialaysis. Later they were able to pull of some extra fluid through dialysis but than had issues with other numbers so they needed to give it back.

Today Ally will be having the plasma exchange done again and we will keep trying to get the fluid off. The vent settings have stayed the same mostly because Ally has been very stable with them (at least for right now) so since she is not going to be extubated for quite some time there is no reason to push her. Also right now her pressures and oxygen settings are kind of moderate or at least not as high as they had been so they are not causing damage to the lungs while trying to ventilate her.

We will post later this afternoon. Keep the prayers coming. Please pray that they can continue to pull off fluid and that while doing that all her vitals will remain stable. Also pray that they can relieve some pressure and distention in her abdomen so that her bladder could do some work on its own. Finally please pray that God gives the nurses, docs, and all the support staff the strength to care for Ally and all the other children (right now the PICU seems to have so many children stuggling.)

Jill

Ally is back to being very unstable. She had a procedure done this afternoon that took all of the blood plasma from her body and replaced it with 600cc of new plasma, (courstey of the Red Cross).

When the docotors make any small changes, Ally's blood pressure increases or she then starts with low saturations. We are having a hard time keeping up with her and getting a balance that will stabilize her. The plan tonight is to get her back on the dialysis machine to lose some more fluid every hour, which will help her breathe much easier. Tonight will be just like last night, longggggg!!

Please pray that God gives her the time to lose the fluid so that she can rest more comfortably.

We will update again later with any more changes.

Please remember if you have not had the chance to think about joining us on the Donor Awareness Walk this April 22nd, or maybe just a small donation to the team. Without the Gift of Life support we would not have Ally today, nor would many others be able to continue living. Your donations help support the Gift of Life continue their education programs to help save lives. The link is on Ally's homepage to our team. You can join the walk, or just a small donation is greatly appreciated!!!!
Thanks!

Ally has made it through the night!!! She is slowly improving, and I mean slowly! She has lost some fluid on her body, the dialysis is working and she is urinating much more. Her blood clotting is getting better, she is off the osalator machine, her settings on the ventilator are also improving. We are heading in the right direction, but the road ahead can always change within a second, this we know.

Last night was the most difficult night we have ever faced! Not much sleep, alot of crying, and thankful for the huge team of doctors, nurses, medicine, and prayers that kept Ally alive. Without the support from everyone, we would not be able to do this.

Today looks to be another long day. The doctors are working around the clock to bring Ally back to health. Ashley is also here today, and will be getting a small lesson with some great people here on some medicine and what Ally is dealing with. Ashley has not seen Ally in this condition in a very long time, and needs some education before coming into the room to see her little sister.

On top of all this, Pittsburgh has been well aware of the situation, and Ally has moved to a status 1 on the transplant list. Not that it means much now, because she is too sick for the surgery, but if we can get her just a little better by next week, hold that status, we could be going from here to Pittsburgh.

Another decision being made is whether or not to close her g-tube site while she is on the vent. This would help with some bleeding issues we where having since Ally likes to pull at her stoma site, causing it to bleed. We have to weigh the decision on do that surgery, run the risk of a set back, or hold steady and see if transplant calls.

On a more positive note, before Ally was sedated on Tuesday, she was watching her favorite Disneyland video saying she wanted to go there. Well, starting today we are going to contact the Make a Wish foundation to see if her dreams will come true after she awakes from sedation. We want to make sure she gets there before we may never have the chance.

You never realize how precious life is until your back is up against the wall like last night. Be thankful for all you have, tell the people you love, just how much they mean to you, because all I could think about the last few days was what I said last to her before I went off to work, thankfully we both said I love you to each other!

We will update again later this afternoon with any more changes.

Please remember if you have not had the chance to think about joining us on the Donor Awareness Walk this April 22nd, or maybe just a small donation to the team. Without the Gift of Life support we would not have Ally today, nor would many others be able to continue living. Your donations help support the Gift of Life continue their education programs to help save lives. Last night was a perfect example just how important it is to do all we can to help others. The blood bank was pretty much out of Ally's rare blood type AB negative, but somehow managed to save her through miracles of medicine. To here that you may die because someone could not take the time to donate blood, and realize that impact is mind blowing. Something so simple we take for granted, could one day effect your life in a huge way. So please consider helping the Gift of Life today! The link is on Ally's homepage to our team. You can join the walk, or just a small donation is greatly appreciated!!!!

Thanks to everyone for you words of encouragemnent, we look forward to reading all them when we have time during the day. It's very comforting to know your there, and were not alone! Thanks.

This entry is difficult to write without becoming overwhelmed with emotion. Ally is still fighting. She needs to lose alot of fluid over the next few hours in order to live. I ask that if you are reading this, please, please, please pray for her!! The strength to do this is just too much. No parent should have to see or deal with what we are having to endure tonight.

Ally is now hour by hour. We are not giving up! However, we need alot of hope, faith, prayers, and support to make it through tonight.

Medically everything is done what can be done, we now have to wait and pray.

I can't promise when the next update will be, but the hope is it will be good.

We will try to keep updates steady and short through out the day so we can keep everyone informed. Today is not much better, in fact worse than yesterday. Ally needs prayers for her kidneys to start functioning, lungs to clear and her heart to keep fighting!!

She is about to go on a more critical ventilator (osalator) and may even start dialysis for her kidneys. There is a ton of work going on here to keep Ally fighting.

This is got to be the toughest day yet we have ever faced. Please keep those prayers coming!!

I am not even sure where to start with this update because it has been such a long day.When Ashley and I arrived at the hospital this morning Ally was wearing her oxygen mask and was obviously in respiratory distress. By ten o'clock it was clear that Ally would not be able to continue breathing on her own. Grandmom got here just in time to wisk Ashley out of the room while Ally got intubated and placed on a ventilator.

It is not like we haven't been in this situation before but it is so much harder to go back when a month ago Ally was looking and acting better than she ever had. Ally's vent settings are pretty significant and we are sure she will remain on the vent for the next week or so. She has still been having a lot of bleeding from her g-tube stoma site. Because Ally's clotting factors are so high we are having a difficult time getting the stoma to stop bleeding. She has received more platelets and fresh frozen plasma today and her clotting factors are slowly improving.

Another major dilema is Ally's IV access. Her central line has become infected, which is scary because Ally is already on so many IV antibiotics so it must be a very resistant bacteria. The docs thought it would be best to not waste any time trying to clear the line so today her line was pulled and another central line (femoral) was placed. She also has a couple of peripheral IVs. Ally is being sedated but not paralyzed and she is on a couple of continuos med infusions.

The main goal for tonight is to try and stabilize her clotting factors and possibly wean her oxygen (she is currently at 90% which is down from 100%). The vent settings they will leave alone for now unless Ally's condition worsens. She is also having some issues with electrolytes and her glucose so we will try to straighten that out as best we can. Actually because her electrolytes are so off balance Ally's TPN was stopped (hopefully just for today). Also due to the fact that Ally is so sick the docs thought it was in her best interest to stop her immunosuppression meds (rejection meds). They told us not to worry to much about this causing any kind of liver rejection because typically when kids are this sick with infection the body kind of ignores the liver.

I hope this brings everyone up to speed a little. I am sure it makes for some unanswered questions but that's the best I can do right now. We are beyond emotionally and mentally exhausted. Had it not been for the PICU staff's (nurses, doctors, clerks, aides, social workers, everyone!!!) exceptional skill and emotional support we would not have made it through the day and I mean that literally. Right now they are doing just about everything medicine has to offer so mostly Ally needs lots of prayers.

We will update tomorrow when we have some good news.

Jill

Ally had an okay day today. Most of the day she spent trying to get some rest only to be disturbed by yet another doctor or nurse. I forgot how chaotic the PICU can be and today was very busy! She is resting comfortably right now and I am hoping she will have a good nights sleep. Last night she was up a lot due to fevers and because she is on so many meds plus needing blood products, they needed to start another IV and Ally is not an easy stick.

Most of the day today she had a fever. The docs are trying to keep tylenol and motrin to a minimum because they can effect your bleeding time (platelets). They will only give her tylenol every 6 hours which helps to maintain her temp but doesn't really bring it down much. When I left her room she was 103 but like I said she was surprisingly resting comfortably. She will also need to get platelets again tonight. Ally has a rare blood type (AB negative) so they can not match her platelets exactly. Therefore she also needs to get a special med called immunoglobulin to protect herself from antibodies. Her blood type is okay for a regular blood transfusion because AB is a universal recipient so she usually is transfused with type A blood. All of this reminds us how important it is to donate blood. Tonights platelets will be Ally's fourth blood product she has received in the past nine days.(To find out more about blood donatiion go to Miller Keystone's Blood Center link at the bottom of Ally's home page.)

Today Ally was needing more oxygen than yesterday but not as much as she needed Saturday when she was really in respiratory distress. She also had an ultrasound done of her kidneys (I am still not sure why but hopefully I'll find out tomorrow). Dr. Dunn would like to have an upper GI done with a small bowel follow through but its takes quite some time for contrast to pass all the way through Ally's bowel so he feels she is too sick to have this done right now.

I don't forsee Ally moving to the floor anytime in the next day or to. It is hard to adjust to life in the PICU again. It also makes it more difficult for Ashley to be here so she will be heading home to school and to Grandmom's and Gram's for the next few days. It is nice to see all of Ally's old nurses and we know that right now this is the best place for her to be.

We'll update again tomorrow hopefully with all good news! Don't forget to go to the link for the Dash for Donor Awareness. We already have people signing up to be Ally's Angels!

Take care and please keep our friend John Maicher in your prayers. John and Ally were both admitted the same day two weeks ago and now John too is battling some kind of infection. Although we wish both John and Ally could be at home it is nice to have someone else here that we can talk to, misery loves company!

Jill

Well so much for a smooth and easy recovery. Ally has started back with fevers again late yesterday. Early this morning at 3 a.m. the hospital called to say she needed blood and platelets. We will just have to see how today goes.

We also added a link on Ally's site for you to join us again this year as we will form a team to help support the cause of Organ Donor Awareness. Please consider making a small donation or better yet, join us on April 22nd as we walk as a team to support the Gift of Life. This cause means a great deal to Jill and I and would love to see our team grow in size!! Please consider taking the time to show your support!

If you plan to register for the team, please do so early (by April 1), so we can have the correct number of t-shirts made.

Thanks!! Shane, Jill, Ashley and Ally.