Ally Heintz

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