Ally Heintz

A huge thank you to all who supported our family today by joining our Angels for Ally team or contributing to the effort of raising yet another huge amount of money, that will no doubt save many lives in our community!!! Over the next few days the total will be complete. There is still time to donate, if you like.

Today as we walked, we remembered and took time to honor our donor families from Texas and Michigan, both of which have provided Ally the Gift of Life! Without their decision to say "yes" to donation, Ally would not be here today. We also honored our little buddy Logan Davis who passed away in December from complications after his transplant. His mom also flew in from Ohio to join us in our walk.

We had a very busy weekend with the walk, having friends from Pittsburgh in town, and just making time to enjoy each other as a family.

The event today went very well. The team was well represented with many of our friends and family. Having so many people attend an event like this, makes it difficult at times to just get a quick hello into some of the team members. If we missed talking or catching up with you, please forgive us! We were being pulled in many directions today.

Ally's day was fairly good. When we arrived at the event and she had seen the amount of people, the first thing she said was "go home"! Ally does not do well with large crowds, alot of attention, and hates loud noises. Most of this is due to being confined to a hospital setting for so long. Something we will need to work on over time (as well as many other things).

The think worst and most terrifying moment of Ally's life did happen to her today. Some of you were witness to it. As the walk was about to start, Ally was sitting in her double seated red wagon, with her back to me, when all of the sudden out of no where came the Philly Phanatic. Without realizing Ally was seated in the wagon, the Phanatic jumped right into wagon. Remember Ally is in the wagon, so that meant he was sittting on her with his belly covering her. If Ally would of just seen him from a far, she would have be terrified, but to sit on her, well I thought she may just need a heart transplant! I quickly gave the Phanatic a push and wisked Ally away from the scene! It took about 15 minutes for her to calm down and remove the hands from her eyes. The poor kid can never just have an uneventful day!

Anyway, the rest of the day went well. Weather was cool, not to hot, and no rain!! Jill, Ashley, and Ally left tonight to go back to Pittsburgh, so I'm sure the girls will be exhausted tomorrow from the long day today.

We will update with photos in the next couple of days. If you were at the event, and captured some photos, please pass them along to us at aajsheintz@yahoo.com. We would love to include them to the website.

Thank you one more time to everyone for such a huge effort to Angels for Ally and the Gift of Life! You are all truely the best friends and family one could have!

Next year, we have some bigger ideas for the event, so plan now to mark the calendars to join us again in 2009!!!

Shane

Thank you so much to everyone who has joined or contributed so far to the Angels for Ally team! There is still time to make your donation. Remember, every dollar counts. The link is on Ally's homepage. You can donate to by clicking Shane's name, or by joining the team Sunday!

The schedule for the Gift of Life Walk/Run this Sunday 4/20 is as follows:

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If you want to Register at the event and not online you can. The times for open registration are 8:30-10:45a.m.

5k runners need to be at the art museum by 9:45a.m.

10k runners need to be at the art museum by 10a.m.

Walkers, we would like to have you there by 9:30a.m.-10:00a.m.
Walk begins at 11a.m.

If you want to be part of the team photo, we are scheduled for 10:30a.m. We would love to have as many people in the photo as possible. Please try and arrive as early as possible.

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Angels for Ally t-shirts

If you have not gotten your Ally shirt(s), don't worry... they will be available at the event. If you have not emailed your sizes to us, please do so at aajsheintz@yahoo.com

If would like to pickup your Ally shirt(s) before the event, they will be available for pickup at our house between the following hours:

Friday (today): 3p.m. to 7p.m.
Saturday: 10a.m. to 4p.m.

Please call first: 215-234-9686

Address you can map to for directions:
2500 Deep Creek Rd.
Perkiomenville, PA 18074

Team colors are Black & Gold!!
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As for how Ally is doing ...well she is healthy enough that she is going to be there at the Gift of Life event!!!! Ally missed last years event because she was extremely sick and in the hospital. For some, Sunday is your chance to finally meet our little angel for the first time!

If you have not thought to contribute, or cannot join us, please at least keep our little buddy Zac Johnson in your prayers. I know all your prayers in the past have healed or gotten Ally this far, and now our friends the Johnson's need your help! You can follow Zac's progress via the link off of our site. Let them know you are praying and thinking of them. They really need our help!

Thanks, Shane

Not too much to report since my last update. Ally has remained at home and seems to be doing great. She has had a busy week of appointments with PT and OT, transplant, and she also got fitted for some orthotics or possible braces that her PT had recommended she get. Otherwise the weather has still been beautiful so we have been on a lot of walks.

Today Ashley had a playmate over and then her friend's mother invited us all over for dinner. She also has a younger sister so Ally got a chance to play with her a little. It is always nice to get out and do something normal. Ashley's school is planning a trike-a-thon event to help raise money for our Ally's Angels team. The event will not take place until May but the sponsor sheets will be turned in next week so that the money raised will count towards our team at the Dash for Donor Awareness.

I am so thankful to have found Ashley's school, they have been such a wonderful support system for both Ashley and myself and really to Ally too. They have helped to make things so much easier for all of us. This month her class is learning all about their bodies so it goes perfectly with talking to the kids about organ transplantation and why they are participating in this event. The kids are already very excited and have been asking their teachers a lot of questions.

All that being said about organ donor awareness, I have a great story that shows how many people in this world still have no idea about what it means to wait for an organ transplant. Yesterday Ally's equipment company sent someone out to deliver oxygen to us. Now this guy is definitely familiar with seeing people with a variety of medical problems. So he asks me about Ally and I say "well she is trached but her main issue is that she had a multi-organ transplant this past summer that she is still recovering from.I then proceed to tell him what organs she had transplanted and he says "well why did they wait till she was four and not do it when she was a baby? Were they waiting for her to get healthier and stronger?"

By this point I must be looking at the guy like he is crazy! First of all no one that I know gets stronger when they have end stage liver disease and a bowel and stomach that do not even function!!! Second, has this guy never heard of people waiting for an organ transplant. So I say "well she was on a waiting list for over a year and a half." His response, "there is a waiting list for something like that?" (apparently he has never heard of this)!!!

This story is exactly why the Dash for Organ Donor Awarenss is so important to us (and by us I mean all of us). There are currently over 98,000 people on the transplant waiting list in the United States. Everyday approximately 18 people will die while waiting for organs and almost everyday I encounter someone who does not know the first thing about organ donation. We are talking about something there is a cure for and yet still people are dying.

If you are still planning to sign up for the walk make sure you do so before April 14th. After that date the registration fee will be increased from $25 to $30. Click on the Ally's Angels link that is located on the homepage or go to www.donors1.org to register. Thanks to everyone who has donated to our team and to all those that will be joining us. We have almost reached our goal of 120 team members!

Jill

Just a super short update to say that Ally did come home, again. She never really did have an additional line infection all of her repeat cultures stayed negative. She came home on Saturday and we have just been busy with appointments and getting out. The weather in Pittsburgh has been gorgeous the last three days so we have been out a lot.

I will update again before the end of the week, or at least I will try.

Jill

Okay, if you thought I was frustrated last week that pales in comparison to how I feel right now. I don't think there is enough silly string to make me feel better. I will warn you this will be a long update. Where to begin...

Around 7:30 last night Ally was discharged from the hospital (Please hold your applause, rule number one, always keep emotions in check when dealing with a chronically ill child!) After three days of negative blood cultures I was sure Ally was good to go. Afterall she will be treated with IV antibiotics for 42days so that should definitely equal about 6 weeks out of the hospital, right? WRONG.

3 p.m. my phone rings (rule number two and this one I am going to start following more! If your chronically ill child is with you and a call comes from the hospital, DO NOT ANSWER! There is nothing wrong with screening calls and then playing dumb and saying you never received a call!) When I answer (stupid me, forgot rule number two) I hear, "okay, just remember I am only the messenger!(already a bad sign, I knew I should have thrown my phone out the window) Ally's blood culture from yesterday is positive you need to bring her in to be admitted for a different IV antibiotics. Come to admissions around 4!" Are you kidding me NO, NO, NO!!! Now the tears start. Oh yeah, did I mention Ashley is in the car the whole time so now we are both crying. Hang up. Curse, curse, curse!!! Ashley crying and saying "You told that doctor no, right mommy? I don't want Ally to go back to the hospital. It is not fair!"

Seriously, this is our life and today it was not fair, not fair, not fair! Trust me I am so grateful just to have Ally and Ashley but come on, we need a break! The plan now is to add another antibiotic and get more cultures. That is it, still not symptomatic but we have to stay until we get a negative culture. Oh yeah and it is the start of the weekend which translates to us having to stay at least until Monday.

Okay I am done complaining. If you did not get to read my donor story earlier this week be sure to read it. Besides it puts into perspective what I am really trying to say here, that my life is crazy but I will take it anyday as long as at the end of the day I have my girls.

Thanks to everyone who has signed up for the walk we are now up to almost 100 team members!!!

Take care,
Jill

April is organ donor awareness month and I thought it would be nice to start the month off with another story about organ donation. However unlike the other stories I have shared with you, this story comes from the donor's family. I hope this story will honor the memories of Chad's life and bring to light the wonderful person he was. Ginny, Denny and Nikki, thank you all for letting me share Chad's story.

On April 30th 1998 on his way to work Chad was involved in a car accident and both he and the driver of the other car were killed. Chad was just 19 years old when he died, a life cut way too short.

I have lots of memories of Chad from when I was a child. His mother and my mom have been best friends since grade school. I remember endless shopping trips (definitely our mothers ideas), summers at the pool, and one trip to a water park. Mostly I remember Chad loving the outdoors. Whether it was hunting, fishing, camping, or just hanging out, Chad was always outside. In fact I can still picture him running around the woods behind his house. I think the only memory I have of Chad inside is of him in school in a weaving class that we had together my senior year in high school. Knowing Chad, school was probably about the only time he spent indoors.

When Chad was 16 he got his driver's license and he made no hesitation in checking yes to be an organ donor. His mom asked him are you sure you want to do that and Chad looked at her as if she was crazy and said "sure, why not?"

Chad's words are so simple but so true. "Why not?" Why not change someone's life for the better? Why not give someone else a second chance at life? In the end, when the doctor approached Chad's family about donating, there was really no decision to be made. Chad had already done that for them. Chad's mom said "he never questioned it and therefore we never questioned it either."

Chad was able to donate bone, bone marrow, skin, and ligaments. His corneas were also donated and his family has received letters from both women who received these. The letters stated how grateful they were for the decision Chad and his family had made to donate. They also said that they thought of Chad everyday. Chad's parents said that they felt both proud and happy that their son had made someone's life so much better.

Chad's story definitely shows us all the importance of organ donor awareness. Had Chad's parents not have discussed organ donation with Chad prior to his accident they would have had no idea how strongly Chad felt about organ donation. Perhaps they would have made a different decision about donating. Please remember to talk to your family about your wishes to be an organ donor. If it is marked on your license that is great, but your family ultimatley has the final decision to make. Let them know how important it is to you that they carry out your wish to be an organ donor.

Thank you Chad and Happy 29th Birthday!


If you have not done so please sign up to participate in the Dash for Organ Donor Awareness. You can click on the Ally's Angels link that is on the homepage of this site or go to www.donors1.org to sign up under Ally's team. Time to sign up is running out. As of now the registration fee is $25 but it will soon be increased to $30 for all those procrastinators. Also remember to send us your shirt size so that we can order you a shirt with the Ally's Angels team logo on it. Email shirt sizes to aajsheintz@yahoo.com. We have youth xs to Adult 2X available. We would like to place the order for shirts on Friday so please try to get your shirt sizes to us by Thursday. Also if you can not participate in the walk you can still donate to the cause. Click on the same link (Ally's Angels) on the homepage and the you can donate under Shane's name on the team page. The website is secure so all credit card info is safe. Also if you make a donation and you would like an Ally shirt please just let us know. If you have any questions please email us.

Thank you all for your support.
Jill

Well so much for updating this when Ally came home, because as of now we are still in the hospital and I am really not sure when she might get discharged. Before I go on I must say thank you to all of you for listening to my complaining the other day.

All that being said (and everything I said the other day too) I have come to my senses and realize that there was no need to really complain because transplant (thank you Dr. Kyle) was really just looking out for Ally's best interest. Afterall, that is what I like best about the transplant team, the fact that they always tend to lean towards the safe side. Plus after we got the official NO for going home on Friday, Ally's wonderful nurse Patti, thought of a very constructive way for us all to workout our aggression. She supplied numerous cans of silly string for us and after Dr. Kyle delivered the official "NO" we showered him from head to toe and glasses to coffee with silly string! He was a very good sport about the whole thing and even came back to let me empty my can:) I will now be keeping a silly string supply handy to workout all of my frustration I think it worked better than complaining.

Speaking of frustration,(where is that silly string anyhow) things did not seem to improve as the weekend progressed. The first bad news we got was that as of Friday all of Ally's cultures from both lines were now positive. Due to the positive cultures and what was growing (coag-negative staph for all those interested) from her line, transplant ordered an echocardiogram. The echo was done late Friday afternoon and before 5 o'clock someone had already come to talk to us about the results (FYI: fast results in a hospital almost always equal bad news). Ally's echo showed a definitive area of bacterial vegitation in the right atrium of her heart. This area of vegitation is more commonly known as bacterial endocarditis. Some of you may remember that Ally was treated for endocarditis back in the fall but it was later the cardiology team determined that this was not a true area of bacterial vegitation. However, this legion is much larger and it is in an area that looked perfectly normal on her last echo done back in December. Therefore the docs can definitively say that this is endocarditis.

On to the plan. As of now Ally was placed on IV vancomycin and she will remain on that for at least six weeks. This is the drug off choice to treat endocarditis but it is also a very renal toxic drug so her drug levels will need to be followed closely. Plus as of now (this being the fourth day) Ally is still having positive blood cultures. Chances are another antibiotic will be added if the cultures do not clear in the next day or so. Thankfully Ally is still acting well and clinically that is always the most important thing. As long as that remains the case her central line can stay in place and even if the line had to be pulled another line would need to be placed so that Ally could receive the IV antibiotics. An echo will be repeated sometime this week or early next week to see if the antibiotic is shrinking the size of the legion. Then she will have another echo done later in her course of antibiotics. The infectious disease doctors describe this bacteria as something that is very sticky and often difficult to kill but does not tend to make the patient as sick as other bacteria or line sepsis often do.

So for now we will just continue to sit and wait. Ally has been escaping her room as much as possible and both the girls are busy playing with Ally's neighbor (a wonderful little girl that the girls go to know back in the fall). Ashley had a breakdown Thursday night when she realized Ally would not be sleeping at home but since then she has handled things well. I will continue to dream of life outside of the hospital and try to keep focusing on being positive!

Oh I almost forgot to share this great story! My weekend ended on a great note with Ashley vomiting all over Ally's hospital room:(

Staying positive:)
Jill

This will be a real quick update because I refuse to use this site to rant and rave about how frustrated I am right now. So I know if I write too long I will end up doing exactly that.

So here is the latest. Ally's surgery was cancelled, which I am fine with becaue if she really does have a line infection we could risk causing her more problems and possibly a much worse infection. However I do not understand why yesterday I was called and told that Ally would have to be admitted for IV antibiotics and now we can not leave until there is a negative culture! Never mind Ally has not had a temp since Monday night and has acted better and looked better this week than she ever has!

I don't know why yesterday there was such a change when on Tuesday no one seemed to be concerned about the culture. Plus if I could have repeated cultures Wednesday liked I asked to, we could have started antibioitcs a day sooner and have been out of here by now. Of course now it is the weekend and we all know nothing gets done in the hospital on the weekend. So instead of keeping Ally at home (only two minutes away from the hospital) we are stuck here and risking exposing her to even more germs and infections. Not to mention last week Allegheny county (where Childrens is located) had more reported cases of Influenza then they had all winter long. So I certainly hope we get out of here with Ally looking as great as she did when we came in.

Alright that is it I am done complaining it gets nothing accomplished anyhow. I will update when we are back home and I am feeling less frustrated.

Well I hope everyone had as great of an Easter weekend as we did! The girls of course got way too many Easter gifts (it was Easter and not Christmas right?). Plus it was my niece's birthday party so my family also combined it and had cake and presents for Ally since no one got to see her for her birthday. Make sure you check out the pictures to see the big Lighting McQueen car Ally got from Grandmom and Pop!

It really was just wonderful to be at home and to get to visit with so many friends and family. Plus I got to sleep in a comfortable bed for once. Well maybe sleep isn't the right word considering I think the most sleep I got was Sunday night and that was only about 5 hours. The other nights we were having lots of problems with Ally's feeding tube and her nightmare ostomy bag so I only got about 3 hours of sleep the other nights. Anyhow, at least I got to lay down in my own bed!

Unfortunately the great weekend came to an abrupt end yesterday when we arrived back in Pittsburgh and went directly to transplant clinic. In hindsight it was not a very good idea to get the girls up at 6a.m. put them in the car then drive two hours, then stop for a break to go to the bathroom, give meds, and draw labs. Then get back in the car and drive three more hours to the hospital. Then sit in a waiting room for about an hour to be called back for an appointment that would probably only take about 10 minutes! Definitely a bad judgement call on my part. Not to mention that by the time we did make it to the hospital Ally's ostomy bag (did I mention what a nightmare it is) was leaking (again). Then the appointment did not go as planned and we got some news none of us were prepared to hear (I'll explain in a minute). Needless to say, by the end of the appointment both the girls were in tears and I was in desperate need of a glass of wine and it was not even 2 o'clock in the afternoon.

So the wonderful news I got in clinic has a lot to do with Ally's nightmare ostomy bag. For some time now we have been struggling to keep a bag on Ally for more than 24 hours. She has a large area of granulation tissue above her stoma that keeps growing down over the top of her stoma and making it very difficult to attach an ostomy bag. We have used silver nitrate and it starts to go away and looks like it has healed but then the skin starts to break down and the process starts all over again. Last week in clinic when the surgeon looked at it he said that they should just remove it and pull the skin down to the stoma and suture it in place. It sounded easy enough so I figured it would be a short little out patient procedure, wrong. Apparenlty she will need to stay a few days to make sure it is healing okay and that they can get a bag to stay on the area. It was definitely not in any of our plans to have Ally admitted back to the hospital. Well not much choice there considering later yesterday I got a call to say that Ally was added to the OR schedule for Wednesday, this Wednesday!

So when we finally did get home later yesterday afternoon there was no chance for me to get that glass of wine. When Ally realized (even though I had been explaining it for a week) that we were staying in Pittsburgh and not going back home, the crying started all over again. "I miss my kitties, I miss my daddy, I want to go home, NOW!" Then it was Ashley's turn "I am so hungry, I don't want Ally to go back in the hospital, why can't YOU make Ally's belly better?"

Well if you thought that was enough drama for the day you are wrong. I guess Ally didn't really like the plan of going to the OR so soon so she helped by spiking a temp last night. Nothing too high, 101 but definitely high enough to raise a red flag. I refused to call the on call person for transplant last night because there was just no way I was going back to that hospital and thankfully other than the fever (which did subside with tylenol) Ally had no other symptoms. I did however call transplant this morning and Ally was removed from the OR schedule on Wednesday and placed on for Friday.
They also asked if I would draw some blood cultures, just to be safe.

I was hopeful the whole fever thing was a fluke because all day Ally was great and back to her normal happy self. How dumb on my part, a fluke honestly would we be that lucky? Well here it is 10:30 and transplant just called to let me know that Ally's blood culture has already grown something (in less than 12 hours). Not surprising considering everytime her ostomy bag leaks stool is getting all over her central line! Transplant said that they would not make me bring Ally in right now since she currently was not symptomatic.(Thank you, sitting in the ER all night with two tired little girls would not be very much fun). I will have to wait until tomorrow to find out the latest plan for the OR.

Well I hope I didn't bore you all with the details of my life. I will try to update again soon with news on when we are going back into the hospital. Make sure you check out all the pictures from the weekend and some new pictures of Ally in Pittsburgh. I am going to bed now and I am hoping I will have a wonderful dream about me being on a vacation. Of course right now sleeping long enough to have a dream would be a good enough vacation for me!

Jill

P.S. The Gold Ally's Angels logo is the color of our team's shirt for this year's donor walk. We decided to go with a little bit of a Pittsburgh theme considering it is such a big part of our lives now. Don't worry you don't have to be a Steelers fan to participate!

We are home!!! As Ashley would say "our real home". Which is why I have not updated at all this week because if I would have mentioned home before we were actually home it never would have happened. I did not even tell the girls about it until late yesterday evening because I was so afraid it would jinx the plan.

I think Ashley was in shock that we were all going home. I picked her up at school early today to head home and her teachers told me that she had spent the whole day smiling and telling everyone "I am going home, to my real home, all of us, Ally too! Ally was equally as excited as Ashley and even broke down in tears a couple of times to say that she really missed her kitty cats and wanted to go home.

On July 22nd we had packed up and left for vacation in Ocean City Maryland and on July 28th we got the call for Ally's transplant and headed from Maryland to Pittsburgh. So it has basically been eight months since Ally has been home and eight months since we have all been at home together!

When we pulled into the driveway both of the girls were out of their seats before I even stopped the car. I tried to explain to both the girls that on Monday we need to head back to Pittsburgh and I know Ashley can understand this, even if she does not like it, but I am not so sure that Ally will understand why we have to go back. For right now I really don't care about Monday because today was just wonderful and it will be so nice to be home for a long weekend and to catch up with all of our family and friends.

Thanks to everyone who has signed up for the team. I guess Shane's pep talk last week paid off because our team grew a lot this past week (over 50 members!). However, for all of you procrastinators there is still plenty of time to sign up. Just click the Ally's Angels link at the bottom of the home page. Also remember that if you signed up or made a donation you need to email us your t-shirt size so that we can order you an "Ally's Angels" t-shirt. Email us at aajsheintz@yahoo.com

I will catch everyone up on all the boring medical stuff next week. Plus we should have some new pictures and maybe some video to post from Easter. Also I will try to have another donor story ready to share with you all.

Have a great weekend, I know we will:)
Jill

Ally continues to do well at home. She is very busy playing, taking walks around town, and just having fun with her sister Ashley. Her latest labs looked good, and we are hoping on bringing Ally home to the eastern side of PA for Easter later next week. This will be just a weekend visit, but a very busy few days.

I know many of you have said you plan on joining us for the Gift of Life walk on April 20th, and or plan on donating to the team. If that is true, please send us your t-shirt sizes and quantity to aajsheintz@yahoo.com, so that we can plan on ordering the Angel for Ally shirts in the next week or so. This year shirt will also have a special design.

April is a very important time for our family. It's donor awareness month, a time to reflect on how much we appreciate the decisions two families made to save our Ally!

Last year, someone made a comment to me that maybe the only reason we were such a success last year at being such a dominant force at raising funds for the Gift of Life was that Ally needed organs. I said no way!! The reason we were so successful is that we have such a huge caring support system that will always be there when we call upon them. Everyone that reads this website daily, knows the impact Ally has played in their lives.

So now we are down to one month left to try and prove last years comment wrong. Can you help us do it??????

Any amount helps, really! You can donate from the Angels for Ally link off the homepage, and clicking Shanes name, join the team, send a check to Jill and Shane made out to the transplant foundation, or just email with what works best for you.

This event takes a huge amount of extra effort from both JIll and I and we are looking to YOU to help make this a success!

PLEASE JOIN NOW, or MAKE A DONATION TO SAVE ANOTHER LIFE!

Thanks to everyone who have joined or donated already!!!
Shane & Jill

Jill and I wanted to share another family's journey and experience with you on just how important organ donor awareness is to families from our area.

Brian & Deanna Johnson are a family we have grown to know in the past few months while staying in the hospital at Pittsbugh. Their story like ours and so many other children waiting for the call for organs, is one of courage, hope, and love for their children.

Please read the message below from both Deanna and Brian....


At night I walk the hospital hallways. One arm holds a small boy clinging onto a life that he barely knows. The other arm pulls along his lifeline of medical pumps, antibiotics and life sustaining fluids that keeps him going for another day. At times the hallway is empty and I feel an uneasy aloneness with my son. I hope for smiles. I settle for anything really. All I ask for is one more day.

My wife and I have traded in our comfortable lives in Severna Park , Maryland for a small apartment near the hospital. Zachary’s twin brother Aidan, Deanna and myself are putting our lives on hold while we balance hope and the realities of transplant life every day. The health of Zachary is the major force that keeps us going. His good days are our good days. When his health slips a little piece of us goes along with him. It’s not a partnership we expected when he was born. But then again life is not fair.

Like many of the parents of this wing we are waiting for donor organs. In Zachary case he needs a liver and small intestine. The availability of such organs is rare. Because of his small size the availability of such a commodity is even rarer. Even though his advanced liver failure has put him at the top of the national list we are constantly reminded that this doesn’t guarantee results. We have been waiting six months and the wait continues. Time is not on our side.

Our jobs have been left behind. Our house is vacant. Our dog is staying with relatives in Ohio .

Money is tight. Stress is high. Our health is at best compromised.

Through out it all, our main focus is keeping a family together in a place that we don’t want to be. We want to be home. We want our family intact. We want our lives back.

However tonight we will settle for walking the hospital hallways one more time.

Brian & Deanna Johnson
Severna Park , Maryland
_______________________________________________________________

Thank you to both Brian and Deanna for sharing a small part of what life is like waiting for a phone call that not only will save your son's life, but bring new hope for better days ahead!

Everyone reading this, please, please, consider taking the time to make a small donation to the organ donor awareness walk happening next month. Tell your family and friends about Logan, Zac and Ally. Share with them the stories and life's lessons you learned here on the website on what it might be like to be waiting on an organ donor list.

If all of us told 10 people, just think of the impact we could have as a group of individuals, and all the lives we could save!!

By YOU spreading the word and making a small contribution... life for Zac, and other children from our area could be so much brighter and happier. There is a cure for children like Zac. That cure is education on donation! We need to educate our families, neighbors, and community to say "yes" to donation.

In 2007, the gifts of 389 generous organ donors helped the
Gift of Life coordinate a total of 1,054 life-saving
transplants over the course of the year. This was
able to take place because of those donors and their
family members who looked past their own tragedies and
chose to save or enhance someone's life, like Ally and
many others.

So as you finish reading this, consider joining Allys Angels by clicking the link off our homepage. If you don't want to join the team, click Shane's name, and make a difference in educating our community.

Thanks, Shane & Jill

Just a super quick update because it is almost midnight and I am exhausted! Ally came home Friday evening!!! Which like I said is why it is almost midnight and I am exhausted but honestly I am not complaining just stating a fact. We had a great weekend and my brother and his wife were in town with their little girl. All of us had a wondeful time visiting with them and we especially had fun catching up with Peyton. She will be 1yr old in less than a month and we have probably only seen her a handful of time.

Ashley is on Spring break for the week and returned home to visit with some family. She was torn between staying in Pittsburgh to play with Ally and I or to visit with all of her cousins at home. Of course when it came time to leave both the girls were in tears. Ally cried again this evening and told me "I miss Ashley". I can not wait until we can all just be a family again living under one roof! Anyhow the break works out well for me because I will be able to get Ally all situated and back on track at home.

Ally is not due in clinic until next week. She will have labs drawn tomorrow and I will try to schedule PT and OT for later in the week. Otherwise I am hoping for a quiet week in Pittsburgh (and maybe some warm weather).

I'll update Tuesday with our special donor story of the week.

Jill

Sorry, sorry, sorry for the delay in updating. I really have no good excuse except for the craziness of my life. Ally is doing much better and has had no other seizures. Both the head CT and MRI were negative. The EEG did show us evidence that Ally did have a seizure and that for now she should remain on anti-seizure meds. She will now be followed by neurology (thank goodness because we weren't see enough specialists!) and they will repeat the EEG in a couple of months and decide if Ally still needs the meds. As far as why Ally had the seizure we are attributing it to weaning her Ativan too fast.

By Monday night Ally was feeling much better and once she was done entertaining all of the PICU nurses they decided we could be moved back upstairs to the transplant floor. Unfortunately since Monday her demeanor has not been the same and she has also been very lethargic and shaky. Today neurology ordered another EEG just to be sure nothing else was going on. Thankfully everything looked good but we are still not sure what exactly is going on with her. She has also been needing some oxygen although her chest x-rays have been looking good. The docs wanted cultures repeated and were also going to run some viral tests including more Influenza tests.

Tonight Ally seemed much more like her oldself and part of me feels like half the time she just gets crabby and irritable because she is sick of being in the hospital and tired of dealing with everything. So, dare I say that Ally is supposed to come home tomorrow? Like I said at this point we really don't know what is going on with her or if it is even anything. Maybe getting her home would be the best thing for her afterall there will always be the risk that she will get sick again, I am just not willing to sit around and wait for it!

The only other news is Shane is sick. After Ally's seizure he stayed until Monday but woke up Monday feeling pretty bad so he headed home instead of going to the hospital at all. Yesterday he was feeling better but today he sounded even worse than he did Monday and Tuesday. He went to the doctor and if he is still sick on Saturday they would like to see him again and check him for influenza. The fun never ends!

Please say some extra prayers for all of our family. Shane's grandfather passed away on Tuesday night and although we know he is in a better place it is always hard to say goodbye. Since we are planning on Ally coming home tomorrow (to Pittsburgh) I am not able to go home for the services. At this point we have not even told Ashley about it because we think she has already dealt with enough this week.

We also need to update with another donor story soon. I have one to share with you but have not been able to put it all together so I will probably add that to the site next week.

Jill

Today was not a very good day for Ally. Just before I was ready to leave Pittsburgh to go home for 4 days of work, Ally decided to find a way to keep me from leaving. Ally's morning was ok, I spent the early morning hours playing Mickey Mouse and watching cartoons, waiting for Jill and Ashley to arrive so that I could make my way home.

Just after Jill and Ashly arrived to Ally's room, Ally's whole demeanor changed. She turned her head away from Jill and Ashley, as if she was very mad at them. For the first few minutes we tried to get her attention by asking her to look our way, and answer our questions, but she continued to just stare in the opposite direction we were sitting. So I then got on my knees and put my face to Ally's to explain to her that I was leaving, and wanted to know if I could get a kiss before going home. Doing this I thought it would get her attention, and typically she would say no, no Daddy don't leave, and then my kiss would come. This time nothing but a blank stare. Then Ally turned her head, her eyes rolled back into her head, and her left eyebrow and face started to twitch rapidly. Jill quickly ran for the nurses, and within seconds, Ally was unresponsive. A few seconds later what turned into what we thought was a child just being stubborn, turned into 20 people surrounding Ally trying to stabilize her and get some life back into her limp body. It seems Ally had a very bad seizure.

Of course all of this Ashley got to witness, however, we did our best as parents to remain calm and I wisked Ashley away from the room, and to a nurses station where child life folks came to take Ashley to another floor to play as we dealt wih Ally.

Ally had an emergency CT of her brain, which turned out showing nothing, and later tonight will have a MRI of her brain. Tommorrow a EEG is also scheduled.

All of this happened without warning, making this a very stressful and upsetting day. Ally currently is in the PICU, and stable. Did I mention we were supposed to come home to our Pittsburgh apartment Tuesday? That of course is not happening. Somehow our family loves to be tested of its strength and determination to remain, strong, hopeful, and positive to better days. I got to believe one day life will be easier.

If you have'nt joined Allys Angels and plan on doing so, please take this chance to donate or support the team! Its an extremely important event to us, and today is a reminder to everyone how life's events can change within seconds. Please know that just because organ donation is important to us because of Ally and our experiences, doesn't mean life events someday won't change within seconds for you or someone you love that may need organs of blood, to save their own life.

To join or make a contribution click the link "Allys Angels" off of Allys homepage. If you have questions, just email us at aajsheintz@yahoo.com.

Some helpful tips in becoming a successful fundraiser:

* Recruit friends and family to join our team and walk with you.

* Bring information of the Dash to work with you, ask your co-workers to support you for the Dash!

* Send emails and ask people for donations to support organ and tissue donation.

* Tell your friends about Ally, and the miracle that has been blessed upon her!


Let's try and make Ally's Angels the #1 team. Every dollar helps, and just might save a life.

Shane

I told you all in my last update that Shane and I would be sharing some donor stories over the next couple of weeks. Our first story is a very special story to us. Logan Davis was a little boy that we had the pleasure of meeting this past summer in the hospital. Many of you may remember me asking for prayers for Logan and his mom Melissa to help them through many difficult time. Like Ally, Logan had a multi-visceral transplant and for a long time Logan and Ally followed a very similiar course of recovery. Sadly Logan's recovery took a downward turn last November and his body was just never able to recover. Logan passed away on December 2nd.

Today would have been Logan's 3rd birthday and we thought the best way for us to honor his life would be to talk about how much organ donation meant to his family. Logan's mom asked if I would write this story but I have always been inspired by the way Melissa speaks of Logan so here are some of her words.



From Melissa's blog 1/27/08

"As much as I would love for Logan to still be with us, and for Devin's family to have met him, I can only thank them for the gift we received. Even though things didn't work out as we had hoped for Logan, Devin's organs gave us a few more months to spend time with him that we wouldn't have had otherwise. If you all remember, just before the call for transplant, we were in the hospital with Logan having bad bleeds numerous times each day to the point we were almost afraid he would bleed to death in his sleep.

I'm happy Devin's family allowed me to share this with all of you, and I hope if you are ever asked to be an organ donor, you'll remember Logan & Devin's stories and choose to give the gift of life."


As I said Melissa's words do say it best. What parent wouldn't give anything for just a few more minutes with their child. Logan's donor family was able to give that gift to her. When you have a child that needs an organ transplant you know that getting those organs will change your life. We pray that the change is for the better but sometimes things don't turn out the way we want them too. Never the less without the transplant their health will deteriorate daily and with every breath you will be closer to losing them. With the calll for transplant comes the feeling of hope and without hope what do we really have?

Logan's family knows the importance of organ donation and we hope you all will help spread the word too by supporting our team in this year's donor walk. To find out more information about the walk please click the link to Ally's Angels located on the home page. To read more about Logan or to leave his family a birthday message please go to www.cotaforlogand.com.

Happy Birthday Logan!

Just a quick Ally update to say that everything has been going well. She was moved up to the floor last week and is loving her private suite. Ally has been busy cruising the halls (not that she enjoys this because she feels it is just too much physical activity), catching up on her On Demand movies (the floor has better cable than the ICU), and playing Mickey Mouse's Clubhouse on the computer.

She continues to get a little stronger everyday and is getting close to being back to where she was before the flu. Pulmonology and ENT have also been involved again and talking about decanulation. At this point I really don't care about the trach I just want her out of the hospital.

It seems we will be making use of the extra day we get this month due to the leap year and we will be having a little birthday party for Ally on Friday at the hosptial. One of Ashley and Ally's friends from the floor was recently transplanted after a long wait so the party will actually be a Happy Birthday/ Congratulations on your new liver party! The girls should have fun and Ashley is off of school so it all works out.

Not much else to report. Ashley has a double ear infection and is on antibiotics for that. There always seems to be something fun going on with us! We are excited to see that our Angels for Ally team is already growing and we look forward to seeing everyone at the donor walk. The girls are in a hot debate over the t-shirt color so we are still not sure what color we are wearing. Remember if you sign up to walk you must also send us your t-shirt size. We will have youth xs to youth large and adult small to 2XL. Email your t-shirt size to aajsheintz@yahoo.com. Each week we will be updating the site with a special donor story to inspire you all. Look for the first update later this week.

Thanks for checking in on us.
Jill

It's that time of year again!

The Gift of Life's 13th Annual Dash for Organ Donor Awareness will be held Sunday April 20th at 8:30 a.m.

Registration to join the walk/run is $25. After April 14th, $30.

Ally's story is just one of the hundreds that proved organ and tissue donation saved lives in 2007. Gift of Life Donor Program, the organ procurement organization for eastern Pennsylvania, southern New Jersey and Delaware, has diligently worked with area health care providers and families for more than three decades to facilitate donation and promote it as a life-saving means, and last year proved to be one of the most successful years.

In 2007, the gifts of 389 generous organ donors helped Gift of Life coordinate a total of 1,054 life-saving transplants over the course of the year. This was able to take place because of those donors and their family members who looked past their own tragedies and chose to save or enhance someone's life, like Ally and many others.

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.

This event is extremely important to both Jill and I. If you visit Ally's site often or even just once, you know the true miracle of organ donation. Last year we had an amazing team of over 100 team members who worked together to raise $24,000!!!

Our hope is that YOU can help us raise even more this year, and if you missed the opportunity to join us last year, this year is your chance to experience seeing others who have received a second chance at life, and maybe we can even get Ally there!!

Your donation could be the reason one family gets the education and understanding they need to make a decision to save a life like so many friends we know still waiting for organs.

To join or make a contribution click the link "Allys Angels" off of Allys homepage. If you have questions, just email us at aajsheintz@yahoo.com.

Some helpful tips in becoming a successful fundraiser:

* Recruit friends and family to join our team and walk with you.

* Bring information of the Dash to work with you, ask your co-workers to support you for the Dash!

* Send emails and ask people for donations to support organ and tissue donation.

* Tell your friends about Ally, and the miracle that has been blessed upon her!

More 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! You can see our progress via the homepage link on the gift of life site.. Every dollar helps, and just might save a life

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 payable to the 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 month.

Registration 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 Shane's area name to make a small contribution there. When you register, they will ask you to do it w/a credit card. After April 14, 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 20th. 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 20th.

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

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.

Contact your local blood bank to make a donation and save a life!!

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

I am sorry for the long delay in updating but I was hoping if I kept waiting I would have all good news to report. This time my waiting definitely paid off. Ally is doing great and she seems like a whole different child compared to the one she was last week:)

Late last week the doctors stopped all of her drips and also stopped the anti-psychotic meds. Then over the weekend they decreased her methadone and ativan down to every 6 hours from every 4 hours. This was a lot of aggressive weaning and Ally has tolerated it all really well. Yesterday she was so much more like herself and today she was interacting even more. She has also been out of bed sitting on my lap, or in her chair and she even did a little standing.

I am hoping that tomorrow she will be moved upstairs to the ICU step down floor and that maybe we will luck out with a private room. Yesterday she was off the vent for a few hours and on trach mask with oxygen. Today she spent the entire day on the trach mask and will be put back on the vent tonight when she sleeps. This is a good indication that she is no longer over sedated and that she is getting a lot stronger.

Ashley and I were able to sneak home over the weekend. As always it was great to go home but so bittersweet to be there without Ally. I am really praying that we will all be able to come home for the Easter holiday. Please keep Ashley in your prayers, she has really been having some tough times lately. At this point I think she is just in an emotional overload and is just unable to cope with everything going on.

Thanks for always checking in on us.
Take care,
Jill

Not too much going on here, other than miserable weather and poorly cared for roads. Plus there is road construction everywhere around the hospital and the main bridge that we take to and from the hospital is closed and will reamin closed for at least the next two weeks! To add to my fun Ashley was off school today so I had to have her at the hospital with me for the majority of the day. If you can imagine there is not much for her to do in the 6x6 bed space that we have (did I mention that the 6x6 space also has a crib, a ventilaotr, 7IV pumps, 1 feeding pump, and a rocking chair).

I guess my frustration is showing through:( However, on the good news front Ally has been doing well. The vent continues to be weaned a little everyday and I think by the end of the week she could be ready for some CPAP trials. She is tolerating her drug weans and she should be off all of her drips by next week. She is still on a ton of scheduled sedation meds but getting the drips off will be a huge help. The more the meds get weaned the more Ally seems like her old self. Today I even saw her smile for the first time in about 5 weeks. I am hoping to get her out of bed for a little bit tomorrow. Also her OT and PT have restarted and I think this will help to get her moving in the right direction.

I hope someone is enjoying all of this winter weather!
Jill

Thank you for the all the birthday wishes for Ally. Her day was okay and she did get a chance to open some of her presents.

As far as everything else goes there has not been too many changes. Ally remains on all of her narcotic and sedation drips (much to the dissappointment of her attending who continues to discontinue her one drip every morning only to have the fellow restart it at night. Rounds were a little hostile yesterday). Today there is a new attending on and she has also made it clear that by no means should Ally's drips be increased or restarted! So we will see how the plan goes. Also today they weaned Ally's rate on the vent.

Ally also had a scope and some biopsies done yesterday. Her output still remains high and on and off she has had some low grade fevers. We will know later today the results of the biopsies but since they were just done Monday I am sure things will look the same.

I'll update again on Monday. Hope everyone has a nice weekend.

Jill

At this time four years ago I was on my way to Bryn Mawr Hospital, the third hospital I visited that night. The hospital where my baby would be brought into the world seven weeks early and with the majority of her small bowel on the outside of her body. The night seemed to last forever and in hindsight I guess it did. Afterall the life I lived up until that night is no longer the life I live today.

While the doctor started my c-section a pediatric surgeon came in to talk to me about my baby's surgery. I didn't know it then but this surgeon standing before me would be just the first of many blessings in my baby's life. I can't tell you the amount of times I have thanked God that
Dr. Aviva Katz was the pediatric surgeon on call the night Ally was born.

Just a few minutes later my baby was born. The nurse praticioner (thank you Michelle Kelly) held up Ally so that I could see her and then she was wisked to the bed warmer laid out beside me and I watched my baby girl, all three pounds and thirteen ounces of her, be intubated for the first time. I would have never guessed at that time that this would be just the first of countless life saving procedures in Ally's life. After another couple of minutes Ally was taken to the OR and it would be almost 24 hours until I would get to touch my baby for the first time, and two weeks later until I would get to hold her for the first time.

Fast forward to today and my beautiful baby girl is still changing my life for the better (and her wonderful sister too). I am not the same person I was before I had her. I look at life a little differently now. I find the littlest and maybe the strangest things are just absolutely wonderful. I think two sisters laughing and playing together are some of the most beautiful sounds I have ever heard. Although, I also think bowel sounds are music to my ears (for those of you non-medical people that is simply known as your belly growling and the abscence of those sounds means a non functioning bowel). I don't know what I will do the first time Ally actually has real poop!

Thank you all for joining us in Ally's roller coaster ride of life. This website has been a lifesaver for me in more ways then one and I can only hope that Ally's story has touched some of your lives too. I look forward to writing updates for many years to come. One day Ally will takeover this job for me and what a bittersweet day that will be. My baby will be all grown up but then again she will always be my little girl.

Jill

Thank you for all of the prayers, today was a much better day. I think for the most part Ally had a good day because she finally got some rest after being awake for the better part of 72 hours. She is still receiving the anti-psychotic med and much of her other sedation. By tomorrow one of her narcotic drips should be off and then we can start weaning another med. Otherwise no other changes for today everyone was happy not to do anything but let Ally sleep:)

Again thanks for the prayers.
Jill

I think I could definitely describe today as one of the most difficult days I have ever experienced in the ICU. Some of you may find this hard to believe. Especially if you consider that over the last four years there have been numerous times that I have thought that Ally's body may succumb to the stress that it has been under. So what would make today so much more challenging than all of those other days? "ICU Psychosis".

Now some of you may be confused again. When I say ICU psychosis I am describing a diagnosis for Ally and not for myself (although I am sure at this point it is just a matter of time). ICU psychosis is a disorder in which patients in an intensive care unit experience a cluster of serious psychiatric symptoms. Common symptoms include agitation, restlessness, paranoia, hearing voices, hallucinations, disorientation, delusions, and anxiety. Over the last 24-36 hours Ally has experienced almost all of these symptoms (we even think she has been having hallucinations). What is difficult for us to decide is whether we think this is strictly ICU psychosis or if Ally is also suffering from withdrawl symptoms along with the psychosis.

I can not begin to describe what it is like for me to watch Ally struggle through these symptoms. I have never felt this helpless before. I won't recount the day too much because it was just too upsetting to have to go over it again.

The ICU docs have added an anti-psychotic med (haloperidol) to help alleviate the symptoms of Ally's psychosis. Unfortunately at this point it has not been helping much, if at all. The transplant team was also very concerned about Ally's mental status and ordered a head CT to rule out any possible problems. The prelimenary report is negative and really I was not too concerned that the CT would show us anything (although always better to be safe and thankfully transplant almost always plays it on the safe side).

Okay that is enough of all this ICU psychosis talk. If you really want to know more about it you can look it up. Besides, the good news is that the symptoms usually subside once the patient is moved out of the ICU or sometimes even when the patient can catch up on sleep. Of course, if you have ever spent any time in an ICU you would know that there is no such thing as catching up on sleep, which is of course why such a thing as ICU psychosis exists!

The other good news today is that Ally's scope and biopsies both looked good. Also her chest x-ray continues to look better and the docs have been able to continue to wean the vent settings or her oxygen everyday. I always have to find a little bit of good everyday, that is what helps me get through the day. Here is hoping that tomorrow I have to search to find the bad part of the day because the good parts have been so plentiful:)

Jill

Not too much new to report but I wanted to write an update before the weekend. Ally has been doing okay. When she is awake she is extremely agitated and quite frankly it is just difficult to see her like that so mostly I pray she sleeps. This morning she was really out of control so the docs thought it would be best to have pain management get involved with her care. They have increased her methadone and added some lorazepam. She is still on all of the drips too but hopefully we can start to wean those soon.

Her vent settings have not been weaned at all the last two days and she is still requiring 60% oxygen. Her stoma output had been around 700cc/day but today she has already had more than a liter out and she has another 8hours to go. I am sure if the output stays up over the weekend the transplant docs will put in for a scope on Monday.

Ashley and I are headed out to Columbus tomorrow for a friends birthday so Shane will be holding down the fort until we return on Sunday. I think Ashley and I both need a little break and she should have fun. I probably won't update again until Monday unless there is something important to write.

Jill

She is awake! Ally's paralytic was turned off this afternoon and an hour later she was awake in full Ally fashion. Immediately her right hand went for the A-line in her left hand. Then we moved onto trying to sit up. Next it was asking for water over and over again. After an hour of watching her struggle and just get more agitated her nurse was begging for some extra sedation (ketamine seems to be the drug of choice today). After another half hour of fighting the sedation Ally tuckered herself out and she fell back to sleep.

Also today the docs weaned the vent a little more down to a peep of 6. Her oxygen was increased back to 60% but hopefully once we get her sedation under control the oxygen can be weaned back. Her feeds were increased to 30cc/hour and her stoma output has been down the last two days. The biopsies taken Monday looked good and the docs will continue to run her prograf level a little lower.

So that about sums up the day. I am off to bed to gear up for a busy day tomorrow. Now that Ally is awake there will be no rest for the weary (not that there was ever any rest anyhow). Don't get me wrong though I am more than happy to see Ally awake and to see all the fight that she has in her. Afterall it is that determination that has gotten us through the last four years. Of course I can't believe Ally will actually be 4yrs old in another week! Although the newly sprouted gray hairs on my head definitely prove that it has indeed been four years:(

Jill

Okay I know I updated this website yesterday but somehow it got deleted. So I am sorry if you read yesterdays update because some of todays update will be a repeat.

Ally has definitely been doing better the last few days. Her blood gases have been pretty good and the docs have been able to wean her vent a little each day. She is now down to a Peep of 9 (which was as high as 14) her peak pressures are 32 (last week they were 40) and her rate is down to 20 from 24. Also yesterday they were able to get her oxygen down below 60% for the first time in the last two weeks. Sorry if none of this makes sense but I know all the nurses that keep up to date with Ally's site will be happy to know exactly what is going on.

Ally is still being kept paralyzed. Yesterday the docs considered turing off her paralytic but thankfully reconsidered and decided to keep it on board until she makes it down to a peep of 8. I think this is a wise decision on their part. In theory Ally should require less sedation if she is not paralyzed. However Ally usually ends up requiring more sedation because she ten so fiesty. As of now we kind of have Ally's sedation under control. She is on a versed, precedex, and morphine drip. Plus she has chlorolhydrate and methadone scheduled around the clock.

Another scope and a biopsy were done yesterday and the scope looked good. I thought the biopsy was a rapid but it wasn't so we should have those results sometime today. I don't suspect it will show anything but like I said before it is better to be safe than sorry. Ally's stoma output has decreased some and is not as watery. Her feeds have been increased to 25cc/hour and she continues to receive some TPN to make up for the calories and nutrition that she is missing through enteral feeds.

Overall the last few days have been an improvement. Ally's lungs continue to look better on x-ray and I am hoping she has turned the corner. Time will tell.

Jill

The last two days have continued to be difficult days for Ally. Yesterday she had an episode in the morning where she dropped her oxygen sats and was unable to recover for quite some time. The docs ended up bagging her for about a half hour to try and keep her sats out of the 70's. After that some changes were made to the vent and at this point she is pretty much on as high of settings as the vent (and her lungs) can handle.

I was definitely thinking she would end up on the oscillator yesterday but, things seem to have calmed down a little. Today the docs were able to wean the vent the slightest bit which hopefully will by us the time we need to keep her off of the oscillator. (For those of you who don't know what an oscillator is it is another mechanical ventilator but it works a little differently and it is what the docs go to when they can no longer ventilate a patient on a conventional ventilator). Considering the settings that she is on her blood gases have been relatively okay.

The most frustrating part is that we really don't know why she seems to be acting sicker. Her chest x-rays have been unchanged this week but still look remarkably better than they did last week. Ally's white count was really elevated on Tuesday so blood cultures and trach cultures were ordered. The blood cultures were negative and the trach cultures grew some minimal bugs, all of which Ally has grown in the past and at this point would probably just be considered her normal bacterial flora. Due to the high white count two IV antibiotics were started and then after yesterdays episode two more were added along with an IV antifungal med. Thankfully today transplant and infectious disease took a closer look at Ally's meds and decided that this amount of IV antibiotics was a little bit extreme. Especially when you consider the fact that the only thing that we know we should be treating is the flu which of course is viral. They have scaled back the meds to just two IV antibiotics, one IV antifungal and have decided to keep her on the Tamiflu for now.

Today Ally also had yet another scope and biopsy done. Her output has still been high and although, I am beginning to think Dr. Kyle keeps ordering these biopsies so that he can just make me worry more, I am glad he airs on the side of caution. Her scope looked good and I am sure the biopsy will too. The only other problem today has been Ally's sedation. She continues to be kept paralyzed and she has an arsenal of sedation meds but unfortunately seems to be more awake today. Mostly we can tell this by her heartrate and the fact that her pupils have been very large. The nurses have been pushing for an additional narcotic drip and although I hate to see her start yet another drip I know she needs it be adequately sedated. (At this point she has a drip for Cisatricurium, Versed, and Precedex. Plus she also gets Chlorolhydrate every four hours, PRN Morphine almost every hour, and intermittent doses of Ketamine.) I am trying to just focus on what she needs now and not think about the nightmare it will be to get her off of all of these meds.

So like I said before I think it is just going to take Ally a long time to rebound from the flu. Yesterday Ally's doc told me to "POOF! make her better." If only it were that simple. Of course, I think I would have worked my magic a little sooner, probably like 5 months ago. Better yet I would have waved my magic wand over my belly while I was pregnant and fixed it right from the start. Which leads me to think, where would I be had Ally and all of these problems not come into my life. The fact is it doesn't matter because this is my life now. What is important is how I teach my girls (and maybe all you people reading this site) to take whatever life gives you and make the best out of everyday.

Jill

Well so much for the start of better days for Ally. Today Ally was a little too fiesty for her own good. She ended up battling the vent so much that she collapsed her left lung and was not able to keep up her oxygen sats. Needless to say she is now paralyzed again and is back on even higher vent settings than what she was on last week.

On the positive side her scope and biopsies from yesterday looked good. Her output is still up but we are guessing this is just from her being sick. Her feeds have been holding at 15cc/hour so the docs did restart her on some TPN for now. Also on the good side her liver numbers have all returned to normal leverls.

I think it is just going to take Ally a while to bounce back from the flu. The ICU docs have already said that they will probably need to wean her vent settings even slower so that she does not have another setback (did I mention how thankful I am that Ally still has her trach). Since we are familiar with the waiting game I guess it really does not matter how long it takes to get Ally better just as long as she gets better.

Please continue to keep Ally in your prayers and Ashley could also use some prayers too. Right now Ashley has a cold and I think she is probably a little run down from all the craziness in our lives. I also know that she is sad that Ally is back in the PICU and that she does not have her to play with.

Jill

Hopefully yesterday and today were the start of some better days for Ally. Yesterday the ICU docs decided to reduce Ally's vent settings and turn off her paralyzing meds. Of course this meant Ally was trying to sit up in her bed a half hour later and trying to rip out her newest attachments. The docs then spent the better part of the day trying to increase Ally's sedation so that she was not fighting against the vent.

Today Ally was awake for a little bit and most of that time she spent rather mad. First she wanted water, then she wanted her arterial line out, then she didn't want her pillow, then she did, then she wanted to sit up, no not up that high! Next it was the pulse ox probe, this toe, no that toe, then we moved onto socks and what color we wanted and let's not forget the blanket, on-off-on, no not that blanket!!! Needless to say I was praying Ally would just stay asleep. Didn't I just say last week that it is always nice to see the fight that Ally has in her, maybe I should not have said always:)

Jill

Not too much going on here. Ally has been about the same since the last update. Today her chest x-ray did finally look better but we have still not been able to wean her vent at all. Therefore since her settings have remained high the docs have continued to keep her paryalyzed and sedated. Her stoma output has leveled off a little and her feeds have been restarted.

So for now things continue to be a waiting game. We'll update when we have something new to report.

Jill

Kind of a status quo day for Ally, which is definitely fine with me. No changes to her vent settings and her oxygen is holding steady at 60%. She has required some extra doses of meds to help keep her sedated but overall I think she is comfortable. Infectious disease decided to stop all of her antibiotics and just treat her for the flu with Tamiflu. Her upper biopsies looked good but her lower biopsies showed some activity. This means Ally's steroids will be restarted and her prograf level will need to be run a little higher than what her docs would have liked it to be. This may make it a little more difficult to fight the flu but we also don't want to run the risk of her having severe rejection. Like I said it is all a balancing act.

Keep the prayers coming.
Jill

I started to update this site last night but decided to stop since it felt like I had no good news to report. Today I still don't have too much good news but we at least have a diagnosis for what is going on with Ally. Yesterday Ally had a bronch and some samples were taken and sent for viral and bacterial testing. We just found out she has Influenza A. Of course it is not like I am ecstatic about this but it is at least nice to have something definitive to treat.

Right now Ally's lungs are in bad shape. She is on fairly high settings on the vent and is still on a ton of oxygen. She was also having problems maintaining her sats whenever she was awake and sitting up or talking. The ICU docs thought it would be best if she was paralyzed so that the vent could do all the work and that she was not able to fight against the vent. Having her paralyzed would also make it easier to place some additional central lines, an arterial line, and for her to have an endoscopy and ileoscopy.

The scope and biopsies that were done on Monday looked good. Today's scopes also looked good and we will have the biopsy results tomorrow. The transplant docs will need to keep Ally's immunosuppression as low as possible so that she is able to fight off the flu. However, lowering the immunosuppression puts Ally at a higher risk of rejection. The next few days or so will be a delicate balance of meds. She will also be put on Tamiflu which is one of the few meds to help fight the flu.

You would all be happy to know that Ally was awake for a little this morning prior to the increase in her sedation meds. She is just as fiesty as ever and she knew exactly what she wanted and did not want. At one point her nurse wanted to take off Ally's shirt to place a hospital gown on her. Ally had already received a few boluses of sedation plus was placed on a continuous infusion of a paralyzing med. Needless to say we were convinced she was out for good but, once we tried to take off her shirt Ally flicked open her eyes, grabbed her shirt and told us to GO!

Ally could really use all the prayers you can say for her. At this point Ally's lungs are really sick. Getting over the flu is a huge fight for someone as immunosuppressed as Ally but Lord knows she has enough fight in her.

Jill

Just a quick update to say that Ally's breathing is much worse today and that shortly she will be headed down to the ICU. Her chest x-ray looks significantly worse and the doctors will be treating her for pneumonia. She will also be getting a bronch to get some better secretion samples from her lungs. At this point her left lung is completely whited out on the film. She is on 100% oxygen and is barely keeping her sats above 90%. She will be placed back on the ventilator and hopefully the positive pressure from the vent will help to open up her lungs.

Please say a lot of prayers for Ally. I am also still not convinced that something is not going on in her belly given the fact that it is enormous. So if there is something going on it would be really nice to figure out what it is.

I'll update later.
Jill

sWell the last few days have not been so great but I am hoping we are starting to see some improvement in Ally. She was at least out of bed today for the first time since Wednesday evening so that has to mean some sort of improvement. As far as finding out what is going on with her we are still at a loss. All cultures that have been done (which are too many to count) are negative. She is on a couple of IV antibiotics, and some antifungals, plus she is on some additional steroids. So even though we are not sure what is going on hopefully we have it covered.

I am trying to think of everything that has gone on in the last few days but there seems to be too much to remember. Ally's fevers are starting to diminish but she has still been needing a fair amount of oxygen. Her belly has been very distended but not tender. She has also had yet another increase in stoma output and is now having blood in her stool. Her liver functions have been elevated again and so the doctors have decided to treat her for rejection even though they really don't think she is having rejection.

Rejection means more steroids, which mean uncontrolled blood sugars, which means endless glucose sticks and insulin shots, which means lots of interrupted sleep for Ally. Ally's blood sugars have ranged from near 500 to 40. But the doctors have discontinued the hydrocortisone steroid and have put her on methyl-prednisone and thankfully this does not seem to affect her blood sugar level as much.

Today Ally had chest and belly x-rays and an chest and abdomen CT scan. All of which showed a lot of nothing and I am never sure if that is a good thing or bad thing. The fear of the unknown is driving me insane and sometimes it is just easier when you know what you are treating. Tomorrow Ally is supposed to have another ileoscopy so maybe that can help tell us something. There is also a new transplant doc on tomorrow so I am sure that will mean some change in treatment. I just love Mondays you never know what to expect when a different doc comes on and like I said earlier it is one of those things that could be good or bad!

Anyhow overall I would say Ally definitely seems better than where she was Thursday and Friday. Please pray that she can continue to improve and that we may find out what we are treating.

Jill

I can't even believe that I am writting this but once again Ally has fevers. They started early yesterday morning and have not really stopped since. I think she was only up for about two hours yesterday, shortly after one of her motrin doses had kicked in. She had a fairly restless night but did manage to get some sleep.

We are of course waiting on cultures. So far respiratory and urine are negative. We will have blood and stool results later this morning. In the meantime additional IV antibiotics have been started (she was still on some from the previous infection). Yesterday morning she was acting pretty septic so everyone was a little worried. Her heartrate has still remained high and her blood pressures are definitely low for her but still within a normal range. She is requiring some oxygen but no additional respiratory support.

Please keep Ally in your prayers (as I know most of you already do). Fevers and especially line infections (which is what we all are assuming this is) should be a thing of the past now that Ally has been transplanted. She desperately needs to start drinking more so that we could get rid of this line!

I'll update when we know what is going on.
Jill

Ally made out well with her ERCP and her liver numbers were even down some today. Her output has also been back down and hopefully we will be getting out of here by the end of the week.

Thanks for the prayers for Anthony he made out well with his surgery and is in the PICU at our old Hotel duPont.

Hopefully my next update will be to let you all know that Ally is back home (Pittsburgh home).

Jill

Well I am definitely starting the year off on a bad note with keeping this site updated. But you know the story, I am just too busy to write. On another bad note, Ally is still in the hospital. It seems it is just one thing after another with this hospitalization.

First off the decanulation is not going to happen right now. ENT has definitely decided to wait a few weeks until everything else has settled down. Second Ally got her new line and everything seems to be good with that. Of course she is still on IV antibiotics so we will see after she is done with those.

So what is keeping us here??? Ally's liver functions have been up for a few weeks now. She first had an ultrasound done about two weeks ago and then she had a liver biopsy, then an MRCP (special MRI that looks at the pancreas and bile ducts) and yesterday she was supposed to have an ERCP but there was a lack of communication (how does that always happen) and anesthesia was not aware of the procedure. So now she is supposed to have the ERCP done today! Needless to say Ally is all screwed up with her days and nights becuase in the last 10 days she has had genenral anesthesia four different times, today will make five!

The liver biopsy did not indicate any rejection but it does indicate that something is going on with her bile ducts. The MRCP showed that the bile ducts look okay but we have been told that the biopsy can actually be more conclusive. So the ERCP is a procedure that uses and endoscope to take a look at the bile duct. Then some contrast dye is used and if needed a stent is placed in the bile duct. This procedure will be done over at UPMC Presbyterian by one of the GI doctors. Then main risk is pancreatitis and there is a chance that Ally may need this done more than once.

I am hoping that once the ERCP is done we will be able to get out of here by the end of the week. Ally's stoma output had been very high at the end of last week and over the weekend but it seems to have calmed down. If that would increase that would be the only thing that I would see keeping us here at this point.

Otherwise Ally has been good. She is definitley getting a workout with all the walking she has been doing. Ashley started back to school yesterday and had gymnastics last night.

I will try to update sometime tomorrow to let everyone know about the ERCP. Please keep our friends the Dicesare family in your prayers. Tomorrow Anthony will have a very involved surgery at duPont. Please pray that the surgery goes well and for strength and patience for Sandra and Tony.

Take care,
Jill

To start the New Year off right I thought I would write my own update. First off, Happy Birthday Daddy!!! Second, I want to thank everyone for all the prayers and support that you gave to me and my family this past year. We could not have made it without everyone's help.

Everyone keeps telling me 2008 will be a better year but I think 2007 was pretty great. I know some people would not think spending about nine total months in the hospital as a great year but you have to look at it from my point of view. I have been given a second chance (technically third) at life. My mommy and daddy had prayed for my transplant for so long and although it has been a very long recovery I am on my way to my new "healthy" life. So like I said I guess 2008 might be better but I have no complaints about 2007 afterall I made it through the year and what else could I have asked for.

Okay now I will update everyone on what is going on with me. I am still in the hospital. I got my line pulled and a PICC placed but since then I have been having some problems with my liver numbers being out of wack. Today I had a liver biopsy and we should have those results tomorrow. The docs don't really think it is rejection because more than likely the bowel would be showing signs of rejection. I guess they are thinking it is something with the bile ducts so later this week I may need to have a study done to check those out.

We have still been waiting for the final word from ENT of Pulmonlogy about getting my trach out. Neither seems to want to make the final decision so I think my mommy is a little fed up and is planning to track down my ENT doc via email. I am not supposed to get my new line till next week so if we could coordinate the decanulation in that time that would be great. Otherwise I may end up coming home with my PICC for a little.

So that is about it but before I go one last thing. Please pray for all of our friends who have lost someone in 2007 especially those that have lost a child. They are really the people who will need a better year and who need our prayers the most.

Happy New Year
Love Ally

Waiting, waiting, waiting, the past four years of my life have been waiting. Well needless to say we are still waiting for Ally to have her line pulled. She was supposed to go to IR today and have it pulled and a PICC placed but we ended being bumped off the schedule. Now she is supposed to be the first case tomorrow so we will see. We are also still waiting to see if she can come home with the PICC or if she will have to wait to come home next week after she has a new central line placed.

We are also still waiting for Pulmonology to come by and see Ally. I told the transplant staff that I was fine with Ally not getting discharged until next week if they add decanulation into the plan for the next week! It never hurts to ask.

Some of Ally's liver numbers have been up so late this afternoon she had an ultrasound done of her bile ducts. We should get these results tomorrow morning. We also finally got some confirmation on Ally's latest ECHO and the cardiologist feels everything looks normal.

The girls have been having a lot of fun playing with each other and one other little girl that is a transplant patient. Today was her birthday so the girls got to go to the Birthday party tonight (which sadly enough was in a conference room down the hall). However when you have pizza, ice cream, and a Hannah Montana birthday cake who cares if you are stuck in the hospital!

Jill

P.S. if you didn't get a chance to check this out yet make sure you check the link listed on the homepage to the Heintz Elf family.