Thursday, February 5, 2009

First Major Hospital Stay (in our care)

So, Brian came home to live with us forever on Oct. 9, 1993. My dream of a child had finally come true.

Our first few months went smoothly. As mentioned before, Brian would have what we began calling, "fits". We would feed him via his g-tube and soon he would be crying and really upset. After about 15 minutes or longer he would be exhausted and just fall asleep. It was scary as we just figured he had colic and would try to calm his stomach. He was actually refluxing and choking on the formula as it went back into his lungs. My poor baby! (We didn't know at the time that was actually happening).

During the week of December 15 I was working midnight shift. Brian's dad, M, was home with him in the evenings and overnight. Brian had been running a fever that day and not feeling well. We were giving him tylenol for the fever and hydrating him via the g-tube. That morning I called his dad prior to leaving work to see how things were going. M told me Brian still had a fever and he was going to give him some tylenol. I was on my way home.

By the time I got home, Brian was very lethargic and pale. He was not moving much and M. told me had a hard time giving him the tylenol as we would put that directly in his mouth with a dropper, but Brian couldn't swallow it.

Some how instinct kicked in and we both jumped up, grabbed Brian and ran to the car. Something was obviously not right. Lucky for us the hospital was a quick 5-8 minute drive from our house and there was no traffic (as the intersections were horrendous at that time). We went through the red lights cautiously, honking our horn and looking both way.

We ran into the hospital and an attendant took us to his cubicle and started asking us questions. He got as far as how old is he and said, "He is blue, get him back here!" (I am tearing up now just remembering this whole incident).

Immediately a swarm of doctors and nurses were on top of Brian. M and I were pushed back and told to wait outside. We had NO IDEA what was happening in the room ....just that many people were working on our little angel. This hospital (Christian Hospital NE) was not really geared toward small children, but they actually saved our little boys life. I can't remember how long it took them to get him stabilized, but once they did he was transported ARCH Helicopter to Cardinal Glennon Hospital. M and I frantically drove the 40 minutes to one of the best children's hospitals in St. Louis. (We are very fortunate to have some of the best hospitals and research facilities around).

We arrived and Brian was in the emergency room with a tube going down his throat, hooked up to a machine that was breathing for him (as we came to know as 'intubation'). He had IV's everywhere and was out of it (they sedated him to intubate him and keep him comfortable). I was so scared for my little guy and so clueless as to what was going on.

The doctors asked us lots of questions we could not even answer due to his adoption. We didn't have a big family history on him or know really anything about his birth parents healthwise in any way, shape, or form. All we had to go on was records from his birth and his previous 6 months.

He ended up being hospitalized this time for 21 day, 15 of them in PICU. Whew! Nothing like living in the hospital waiting room. Lucky for me M. worked days and I worked nights so someone was always able to be at the hospital. Christmas came and went with us sitting with our sweet angel at the hospital. All his gifts were waiting for him when he came home.

Brian was such a good sport about being hooked up to all the machines they kept him on low sedation. His dad and I were always by his side; except when the dr's did rounds. He would lay in his bed and play with balloons and watch his favorite TV show of the time, "Barney", while we waited for his cold to dissipate so he could get off the ventilator.

They tried frequently to get him off the vent, thinking he was doing better, only to find he still couldn't clear the congestion from the cold....yes, he only had a pnuemonia was found in any of the xrays. They tested for cerebal palsy and many other things. They could not give us an answer as to what happened.

The only conclusion they could come to from looking back over the records they recieved from the hospital where he was born was that they believed he had Freeman-Sheldon Syndrome. We found out the dr's in his birth place believed this is what he had when he was born. He had been sent to St. Louis Children's Hospital to see the genetisits there (This is when I met his BM at the hospital and the day she relinquished custody) to be evaluted by one of the best in the area. HA!! Was he wrong - in so many ways!

So.....the diagnosis then was Freeman-Sheldon Syndrome (also known as Butterfly Face). That is what went in his records for years to come.

M and I looked the syndrome up on line and found it was extremely rare. They also had pictures of kids with it, but really none of them looked like Brian. The doctors were totally guessing and we did not know any better. Basically there was no treatment for it you just learned to live with it. Well, learn to live with it we did.....with many more interesting fun times to come.

When we finally got home we were so grateful to have our little boy alive. We almost lost him. I can still picture the hospital registration guy in his blue scrubs saying, "he is blue, get him back here!" and my heart just falling to the floor, but my body going into defense and save my baby mode!

I will post the only picture I have of this hospital stay and that was of Brian getting baptized. We waited until he was off the ventilator to do this. He is so precious and angelic. (At that time I was not so much a scrapbooking addict as I am now or I would have had more pictures even though they may not have been pleasant to see in the later years...they are memories ever pressed in my mind).

1 comment:

  1. Brian has been through a lot. Wow, you are amazing Deb. What a great mom you are! I have tears as I read what you both went through. Brian was a beautiful baby. I love his blog. I don't know much about CMS. Thanks for sharing.