Tuesday, June 1, 2010

My New NICU Home....

So,Mommy and Daddy got to the new hospital where I already arrived with the EMT's. Mommy said that when she and Daddy got up to the desk...they said that I wasn't there yet, they couldn't find my name. After a little searching, they found me, I was under Jared Smith, (Mommy's maiden last name) instead of Jared Griffin. The insurance had me as Jared Smith Griffin. Mommy and Daddy told them to leave it that way for now...so that was what they called me here.
I was up on the Eighth Floor in the NICU waiting for them to come. The nurses were setting me all up when they came in. There were all kinds of people here...a lot of tiny babys who looked like they all just needed some loving. Mommy said that the whole time that we were in there some of the mommies never even came in to see the tiny babies.
Mommy called this hospital her home away from home because this is where she spent most of her days. She told me that she rode the train up in the morning while Daddy was at work and then Daddy came to see me after work. Mommy said that her and Daddy put some music on(lullabies)at night and they put a blanket over my eyes to block out the lights in the hall. They would sit in the chairs next to my bed and wait for me to fall asleep and then they each gave me a kiss goodnight and then they rode home together on the train. Mommy said that now she wouldn't trade it for the world. She told me that on some weekends her and Daddy's friends would pick them up a little early and they would all go out to eat at a place called Doc Watson's in Philadelphia. She said that was their "couple time" and that they needed it once in a while because even though they loved me so much....the hospital surrounding was a little depressing and that everybody needs a little time for themselves. Mommy said that she always came in the next day refreshed....she was ready to take on the world.
My uncle Dave (my Mommy's brother)was being seen by a neurologist at A.I. Dupont Hospital in Wilmington, DE for a disease that he had called Charcot Marie Tooth Disease. Since the hospital that I was in was affiliated with DuPont, Mommy and Daddy wanted this neurologist to examine me to see if the disease I had was related to what Uncle Dave had. Mommy contacted the doctor and he agreed to come down and examine me. It ended up that what I had was not at all related to what Uncle Dave had. Uncle Dave's disease was more of a nerve disorder, and this neurologist said mine was a muscular disorder.
Mommy said that while I was in the hospital, I had 2 muscle biopsies done and neither one of them showed what I had. Doctors just told Mommy and Daddy that I had a 'rare' muscle disease. Mommy said that it got to be 'nerve-wracking' when people asked what was wrong with me and she didn't have any idea. After 2 months, doctors still didn't have a diagnosis.
Mommy said that days just came and went over the next few months and there were a lot of ups and downs. She said that she was sitting there with me one day and I just started having seizures and then I started getting them a lot. The doctor put me on medicine to control them. Mommy said that it was scary when I had a seizure, so she was glad that the medicine was calming them down a little.
Over the next few days, doctors were talking to Mommy and Daddy about me getting a tracheostomy (that was an operation where they would cut a hole in my trachea for insertion of a breathing tube)and a gastrostomy (an operation to create a small opening in my stomach for feeding and nutrition). They would do both of these surgeries at the same time. Mommy and Daddy agreed to the surgery which was done on February 8, 1996.
While I was in the NICU, I also got a lot of infections that were really contagious. When I got an infection, Mommy and Daddy and everyone else who came near me had to wear hospital gowns, gloves and masks. Usually, I had to be in a room by myself which they called an isolation room. It protects other people from getting the infection that I had, and to make sure that the infection wouldn't be carried to another patient.
Every now and then, the hospital would call for "family meetings" for the patients and their families. Mommy and Daddy had a few of those with the doctors. They would talk about my medical care. Mommy said that they told her and daddy that since they still didn't have a diagnosis, they couldn't tell them how long I would live. They told Mommy and Daddy that I probably would always need life support and special medical care. They even asked Mommy and Daddy if they wanted to "let me go". They both told the doctors that they loved me and that they weren't giving up on me. I love Mommy and Daddy. I think I was born to love them back and I plan on staying longer than those doctors think. The doctor told mommy and daddy that they would need to learn all of my medical care so they could take me home from the hospital. So, that's what happened next, they made plans to move me to another floor in the hospital called the Rehab Unit and that's where Mommy and Daddy would learn all my hard work. Mommy said that it took a few months for them to learn. Mommy said that the nurses told them to "take over" my care while I was here in the hospital, that way there is always someone around to help them or answer their questions, and to make sure Mommy and Daddy were comfortable taking care of me. They even had to take and pass a CPR class before I could come home.
Well...the day arrived that they were comfortable taking me out of the hospital and to MY HOME that I have never been. If you want to hear about my journey HOME, you have to come back here to my blog....thank you for reading and I'll see ya soon!

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