Ally Heintz

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