Ally Heintz

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.

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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.

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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.


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.

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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.