|
||||||||||||
|
************************************* 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 Pulmonary Fibrosis. Zacks fibrosis took over his lungs in November 2007 when they stopped working completely. He was transported via lifeflight from Bangor to Boston Childrens were he was placed on a ventilator. After much hard work by the docs Zack was able to be put on the lung transplant list in March of 2008. We were able to leave Boston to return home (still on a vent) but we were only home for 10 days and we got the call for new lungs!! He stayed in the hospital until May has continued with physical therapy and many many trips back to Boston for follow-ups, but he is doing quite well today. He no longer needs a wheelchair to get around he is enjoying life without an oxygen tank stuck behind him and he isstarting to enjoy the things in life that were just too hard for him to do for all these years. Its been a very long and tough road for everyone, but Zack has continued to take every step like a champion. He is our hero. There is a regiment of medications and infusions that may very well last into his adult life. We will continue 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 battle for him. Although his life has been filled with long hospital stays, doctors, surgery, and medications and many dispointments 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. We all have learned so much from him. 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 you have finished your housework, or paperwork or whatever the chore may be, take the kids to the beach, or play a game with them. That work will be there when you get back. But you dont get many chances to make special moments with your kids. Something else i have learned through this take the time to make and enjoy 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 Journal Monday, March 22, 2010 7:23 AM CDT Today marks TWO YEARS!! The last two years have been busy. What a rollercoaster ride they have been. Zack has been able to experience some wonderful things that without those new lungs he would never ever been able to do! Links: |
|
||||||||||||
|
E-mail Author: michelenickerson1968@gmail.com |
|
|||||||||||||
 Your gift will help millions of people stay connected with friends and loved ones during challenging times. This page has been viewed 21266 times. Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent. This information does not confirm that anyone is or was actually a patient at any facility. |
|
|||||||||||||
|
|
|
|
||||||||||||
