ZACKS STORY

MARCH 22ND ZACK GOT NEW LUNGS!*********************November 27th Zack was transported to Boston Childrens via life-flight from EMMC. He has suffered total respitory failer and is currently on a ventilator and is under the care of the ICU team here. Zack more then likely will continue to stay in the hospital until he recieves his lung transplant. He is yet to get on the list since he entered the hospital because he was to ill. The most important factor now is to get him well enough so he can start physical therapy. He is still in critical condition but is getting stronger at this time. The transplant team needs to see him able to get out of bed and walk. We are a very long way from that right now but with Zacks strength and determination and the love and faith of our family and friends we will get there. And this time next year he will be running bases with his cousins. I have a plea to all that reads this. I hope not to come across odd in any way but it is very important for me to let everyone know how I feel about whats happening right now. I know that most of us have thought about or even talked about becoming an organ donor but I am asking you all to actually take the time to see if that is something that you can do. The sad reality is that to many times we wait until its too late. Life is so unexpected. It is such a tragedy when you lose someone you love and its so hard to make any sense of it at the time. Give the gift of life. When you and your family become organ donars there may be some peace in knowing that there was something positive that came out of it. Please consider becoming an organ donor. Thank you ************************************************************************** Zack was born a very healthy normal baby. There was no sign that within 6 months of his birth we would be working with doctors trying to save his life. Zack started to feel ill when he was about 4 months old but it was what I thought should be the normal baby sort of stuff, ear infections swollen gums, fussy, but it was a little more then I was use to it just didnt seem "normal" and it didnt take us long to realize that it wasnt normal at all. Unfortunatlly trying to convince his primary doctor was a different story. We were at the doctors all the time and I mean all the time sometimes it would be everyother day. When we were there his his primary doc would say to me I am being too protective and because I hadnt been a mom of an infant in such a long time it was me just being paranoid! In a way I felt like maybe he was right but most of the time I would leave there with a huge knot in my stomach and I would cry all the way home knowing in my heart that something wasnt right. But hey I am not a doctor, right. We finally made the decision to change primarys. It was a decision that saved his life. Zacks weight was down, he wasnt sleeping well, he was drooling way more then he should have been. Our new doc knew right off the bat that something was wrong and we were addmitted to the hospital. On top of the obvious problems that was going on with Zack his bloodpressure was way out of wack his oxygen level was dangerously low he had ulsurs all the way down his throat, basically his tiny body was full of infection and we could have very easily lost him at that point. We spent a little over 2 weeks in the hospital having every kind of test and work-up that anyone could think of to find out what was making him so sick. Then our worst nightmare came true Zack was dianoised with a rare disease a very rare form of immune deficency. SEVERE COMMBINED IMMUNE DEFICIENCY (SCID) At first we were told that there wasnt a treatment or cure for this and the result of this disease is fatal and his life span would be short and he would have to live in a "bubble". WHAT was going on? There was no way that we were going to take this kind of news without a fight. Me and Zacks dad had fought way to hard to keep him with us this long and we were not giving up so easily. We were ready for what ever this journey had instore for our family. It was a very whirlwind next few days. Our family was going to be torn apart emotionally and physically. Because Zacks condition was so rare our local hospital didnt have the knowledge or the resourses to take care of him so we were wisked away via ambulance to Boston Childrens. He should have been at this point starting to zoom around in a walker but instead I was setting up a nursery inside a "bubble". He was in this bubble safe room for the next 6 months. Anyone or anything that entered the room first had to be washed and then gloves and gowns and mask were to be worn all the time. Then the decision was made to do a bone marrow transplant but Boston had no experience with that so again we were off in an ambulance to NYC. Zack has no immune system, nothing to fight off even the simplest of germs. We made it work. Life in the bubble had become the norm. As the infections left his body he became a very happy baby again. He learned to walk in the hospital, he got to zoom around in that walker but it was on the floor covered with sheets that I had taped down with medical tape. (that was his side of the room and no one came into that part without taking there shoes off because we wanted Zack to be able to move around in more places then just his crib) He has had 2 bonemarrow transplants to try and fix his immune system. The first one which he had when he was 10 months old didnt work so we knew at some point we would have to make the decision to do another. His 2nd came in 2003. We are very hopeful this time that parts of his system has been repaired. But this transplant had many side effects. The chemo-therapy he was given before has severely damaged his lungs, the condition is called ILD. He also has a skin condition called vitiligo which leaves him at great risk for skin cancer, a regiment of medications and infusions that may very well last into his adult life. We struggle everyday to keep him healthy, and make his life as normal as we can given the cards we have been dealt. I know that without the transplant he would not be with us today, but they have also left him with health issues that again will be a life long disability. Although his life has been filled with long hospital stays, doctors, surgery, and medication he has managed to stay happy and positive. Along this journey we have been blessed with new friendships. He has so many favorite memories. There has been so many wonderful people that have touched Zacks life and made it a little easier for us all. Zack is an amazing kid. I have learned so much from this kid. I have learned that having a positive and optamistic outlook on life and the situation at hand is better then any medicine or perscription out there. Be positive, no matter how bad it may seem at the time always now that you are loved and blessed and it may seem hard to imagine at the time but it really could be worse. Dont sweat the small stuff, really life is too short to be worrying if the house work is done so you can take the kids to the beach, or play a game with them. That house work will always be there when you get back but you only get one chance to make a memorey and our kids only want to do that sort of stuff with there parents for only a short time, and also to make great friendships and to become a great friend. I hope one day to say good-bye to this journel....but for now its a wonderful place to keep our friends updated. God Bless
*************************************Here are some of Zacks favorite things: #1: Tony Stewart Racing, Game Cube, pokemon, Mario and Luigi, baseball, playing with his cousins Blake and Kaleb, his new kitty named Tiger, his dog Scooby-Doo which he got her on his 3rd b-day, and going camping. His grandfather got him a calf this spring so he is learning to take care of that. I have to say I am learning more then he is. He also has a bunny named Snowballand a hampster named Sonic. He wants to learn to drive and race go-carts someday. And he loves driving his four-wheeler. He loves having family and friends over he is a great host.********************************

Journal

Saturday, June 14, 2008 9:57 AM CDT

I cant believe that we have been home for a month. We are so very busy. We are making just about weekly trips to Boston for check-ups. We have had our share of stuggles but all in all Zack is doing well.We are headed to Boston on Monday for another bronchoscopy and to see if he will need a stint in his right airway. Last week they had to do an emergency bronch and found that his airway was all but a pinhole closed so they dialated the best they could and did some other test to get him "measured" for a stint. It is fairly common to have this sort of thing happen, it dosent make it any easier to handle but at least they can fix the problem. It closed up because of scar tissue growing around were the stitches are inside.
We all are so happy to be home I can tell you that. We have our towns annual "Old Home Days Festivities next Sat. and guess who is going to be Grand Marshall of the Parade....Yeah mister popular himself. He is pretty proud of that. The first thing he said when they asked him was arent you supposed to be like 100 years old to do that? Hes crazy.
He is having a tough time walking still but we hope with some new braces and some extra stretches and therapy added into his routine that it will keep getting easier. Were also having a hard time with him tollerating his tube feeds and also having any type of appetite. I am struggling with the transplant docs to let him start Megase which is a great appetite stimulant for him We know it works for him but they think that its going to effect his sugar his liver and stunt his GROWTH!! I have to laugh at the last thing because over the years this kid has been given more crap that has been a probability of stunting his growth then I can count so when they say that I say I think not eating will stunt growth pretty fast too dont ya think. Oh well anyone that has had to fight the fight with a doc knows what I am up against....but I wont give up there has got to be something else out there if thy are so unwilling to let me try that. Anyway back to better stuff. We are probalby headed up Ashland to my best friends house over the 4th. Lloyd is on vacation that week so we want to head somewhere in our camper and there site if FREE!!! We have been asked by Lainie Witt-Colson to do an interview this summer. So be looking for the super star once agian on the news.
In the last month Zack has gone to the Monster Truck Show at Speedway 95, has gone to a graduation party, a birthday party of his friend Gages, had his buddy Grant over for a play day and both of his cousins have spent the night!!!! Pretty full, and oh yes we have gone on our Jeeps rides!
I want to thank everyone once again for keeping us all in your thoughts and prayers. We Love you all for that.

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E-mail Author: michele64@copper.net