Wednesday, March 25, 2009

The first year with Sam or "You couldn't pay me a million dollars to repeat that year"

2004 what a year! Sam was born and Central Florida got 3 direct hits from hurricanes! It was a wild year...

Sam came home on an apnea monitor. His brain was immature and the system that regulated his breathing and his heart beat didn't really work like it should. Most baby who have apnea have it only when they are asleep. Not Sam, he'd have an apnea while he was wide awake. I went for months in total terror. I was afraid to leave him for a second. If I was home alone with him, I'd take him and his machine with me to the bathroom. It was a tough way to live.

He then developed reflux. Alot of babies have reflux and they spit up all over the place. Not Sam, he'd reflux and then aspirate it into his lungs. On April 27, 2004 we almost lost him because of this awful reflux. I'd picked Steve up from school, rented a movie and got pizza so we could "relax" together. I gave Sam his reflux medicine in a little apple juice as recommended by the doctor. We had just turned the movie on, and I heard Sam make a weird noise. I picked him up out of his swing as the apnea monitor went off. He had totally quit breathing and was turning blue. Steve quickly dialed 911 as I began doing CPR on Sam. He didn't respond so I ran out of the house to our yard and began screaming. Luckily it was right around 5pm so most of our neighbors were home and they came running. Several tried CPR on Sam and got no results. He just kept getting bluer and bluer. It was awful. Then one of our friends, Troy, came running and grabbed Sam put him on the ground and worked on him so hard. He got air into Sam but he wasn't really responding. The fire and rescue truck arrived and took over. Sam was stabilized and sent to Lakeland Regional. In the ambulance he quit breathing again and was suctioned with some help from me. All the EMS workers were young and acted as afraid as I was, that was not very reassuring. When we got to the hospital, one of our pastors from Victory was there. I was so relieved to be at the hospital and to have someone with me that I promptly began throwing up on his shoes. Ever since then I always felt like he kept me at arm's length:) Poor guy! Jon got there and rode the helicopter with Sam to Tampa General where he was kept for several days. Sam actually had no bad after effects of this episode, in fact, it made the doctors take his reflux much more seriously and we were sent home with a suction machine and oxygen. I, on the other hand, had Post Traumatic Stress! No kidding. For several years I could barely talk about what had happened that day and I dreamed about it on several occasions. That was so frightening!

He continued having episodes like this for about the first year none were as bad, but there were times that we literally were suctioning him with one hand and had the phone in the other hand to call 911. Then he'd start breathing...

Of course we were dealing with his eyes through all of this. He had his first cornea transplant on 4/21/04. He was only 6 weeks old from his real due date. At that time, Sam was the youngest person to have a corneal transplant. Due to his eyes being abnormally small, he was also the smallest eye ever to have a transplant. His right eye was done first and he had a cornea from a 21 yr old male, motorcycle driver. That's all the info we were given on the donor. It caused us to weep to think someone cared enough to allow his organs to be donated. We were allowed to write a letter to the family through the Lion's Club. We couldn't give any details except for the fact that their unselfish gift, gave our baby some sight.

We began the eyedrop routine that we carry on today. His drops are given to control his eye pressure, and to keep his eye from trying to reject the transplants (and the implants that he now has). They also fight infection. Over the years we have had some changes to the prescriptions, but they have essentially remained about the same.

In August of 2004, his left eye was transplanted. This cornea came from a 31 yr old male, motorcycle rider. Again we were thankfully to the family that made this unselfish donation. We wrote another letter. Unfortunately this eye did not do as well. He began rejecting it with in a month. Actually we were at Olive Garden for my birthday and I was holding Sam and noticed that his left eye had a brown tint to it. The next day we were in Miami and the doctor confirmed what I had saw. They fought the rejection hard. His eyedrop schedule went to every 10 minutes that he was awake. He also had several steroid shots put directly into the cornea but it didn't work. Right before his first Christmas, the doctor told us to quit putting eye drops into that eye. It had totally rejected. What happened is a white film containing blood vessels grew over his left eye. He probably could see light through it like you would a solid white shower curtain. My heart was broken as we had tried so hard to save his little bit of sight in that eye. I just cried and cried about his eye.

One thing you have to understand, a cloudy cornea is not Sam's only vision problem. He has very low vision in his eyes. so to have a clear cornea does not give hims 20/20. Maybe 20/200... but with a cloudy cornea, there's nothing but light sensations. Every little bit of sight counts so much for him!!!!

So we're dealing with all of this and also we had no money! Of course I had to quit my job to take care of Sam. Our main savings were gone in a few months. I applied for different government benefits for Sam but we were turned down for everything. At the time we were leasing a beautiful home in north Lakeland that I really wanted to buy. Jon began to realize we would have to move long before I accepted it. He brought up the subject to me and it really upset me, but what else would we do? Thankfully Jon's parents had set up a small trust for us that we were able to use. Jon had the idea of buying a trailer and putting it on the prison's property as they have a park for their employees. That way we'd have no monthly house payment. I was not thrilled with the idea but what could we do at this point? So in between numerous hospital stays for Sam, we began looking for a trailer. It was not any fun, we wanted a good used one. What I think of a a good used trailer and what the ads in the paper think are two different things. My father in law was helping us look and he is good at getting unbelievable bargains but his idea of what we could live in and mine were not the same to say the least. It was a stressful time. I think if I had it to do over, I'd handled the whole process a lot different!!! I had a very sick child to deal with did not need the stress of looking at crazy, roach ridden trailers!

Finally I found one that was nice and in our price range. We bought it and had it moved to the prison then we waited and waited for all the county certifications to be done. That turned into weeks. Our lease ran out as we were waiting. so we stayed with my brother in law and sister in law who graciously kept us and our pets. (If I ever win the lottery, I'm buying them a brand new home!!) Finally everything was supposed to be hooked up and county certified. We had to go to Miami for his second transplant in August and we were told when we got back at the end of the week, we could stay at the trailer. So we drove from Miami to Polk City. Everything worked but the a/c. Obviously we couldn't spend the night in a trailer in August without a/c. So I go out to see if maybe something could just be plug in. I did something and was knocked on my butt!! It was a wonder I wasn't killed. Thankfully we have a friend who has an a/c business and he came and finished hooking it up that night. He told me to stay away from he a/c!!

Soon after we moved into the prison trailer park, we were hit with two hurricanes. The second one knocked off power for over a week to our area and phone service for more than a month. That was a trip. During the hurricanes, we'd stay in the prison's administrative area (outside the fence). While we had no power, we still would sleep up there in offices. The prison has it own generator so we had a/c and electricity for all of Sam's machines. At that point he had three!

He was also going to physical therapy, occupational therapy, and speech therapy Vision therapy came to our house. All in all he was 7 therapy sessions a week. He also saw several specialists monthly, pulomologist, gasterologist, neurologist and cardiac. I was so busy taking him all over the place. we were in Miami several days monthly sometimes we had to do two trips in a month. I'm telling you no one could pay me a million dollars to live through 2004.

Also right after we moved into the trailer, I was coming home from taking Steve to school and Sam to physical therapy and the inmates were doing our yard. As I was getting out of the car with Sam, one of the inmates said hi to me. Well I knew him from my probation days and he had an electric hedge trimmer in his hands. thankfully he didn't carry any grudges!!!

It was a rough time (seems like I say that alot!) but God brought us through it. In my next posts, I will write about some of the miracles that happened to us during this time.

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