I promised some pictures awhile ago so here are some. My camera isn't the greatest so sorry for the picture quality. Colby is doing much better. His inflammation markers went from 29 on Thursday to 2.2 today which means the infection is almost under control. The infectious disease doctor said he could go home when he hits 1. Should be tomorrow or tuesday. I talked with neurosurgery today about his blood pressures and the nausea. They didn't want to send him home if he was still vomitting. We spent the last two days tracking his blood pressure every hour and writing down what dose of medicaiton he had just gotten and what type of mood he was in. His highest blood pressure was 151/104 which is a horrible blood pressure for an adult so for a three year old it is totally unacceptable and bordering on stroke causing. We don't need another stroke. So the neurosurgeon called the kidney doctor.
Dr. Nelson came by this afternoon and took a look at everything and is agreement that we do not have his blood pressure under control. Just because his blood pressure was perfect in clinic doesn't show a true picture. And since we had nothing better to do sitting here in our dungeon we decided we'd better track his pressure. He has agreed to start him on a beta blocker. Actonal I think is the drug. I can't remember off the top of my head at the moment. It will take a few extra days in the hospital to see if it is going to work but John and I figured that since we are here already we should get it taken care of so we don't have to come down again.
Colby should get his first dose tonight at 8:00. I think that his high blood pressure is causing alot of his spasticity. It should be the spasticity causing the high blood pressure but since Colby is the backward boy I've come to the conclusion that if we can get his pressure down to a normal range we might be able to help some of the dystonia and the sleep issues. I guess time will tell. Dr. Gooch and Dr. Nelson both have seen Colby do everything else backwards so they were in agreement that this could be the case with Colby even though it probably wouldn't be in someone else.
John will go home Tuesday and get the girls from grandma and as soon as we feel like we have the blood pressure under better control I'll bring Colby home. Sitting in the hospital is boring but I've been able to take a nap every day or go to bed early so I think I have actually caught up on some sleep. I think that it has been horrible for Colby to have to go through three separate surgeries to not have a pump but I don't think we ever would hav caught onto the blood pressure being so high if he hadn't had this happen.
I realize that most people think that this has been the worst month for us and Colby and while I never would have chosen to have him go through the pain and trouble he has experienced willingly I do see it as a huge blessing. I think that the Lord does work in mysterious ways. If we had never done this surgery in the first place we would never have seen how high his blood pressure was getting. There is a very good chance that he would have had another stroke or a heart attack if things had continued the way they were going. Sometimes things appear to be the worst thing in the world but when you compare them to something else you see that maybe they aren't so bad. I wouldn't change this last month for anything.
Yes it has been extremely stressful but hopefully we have found a cause to some problems we didn't think were so bad to begin with. Compared to where we were a year ago we are so blessed to be better off. Colby's quality of life has improved at least ten fold in the last year if not more. Our families quality of life has gotten so much better. Life compared to a year ago is a much happier and less stressful place. I know I've said before how thankful I am for my trials and that couldnt be any truer today.
We are blessed by so many wonderful things I can't begin to express my gratitude to my Heavenly Father, to our families and to our friends. Even though our family is apart this Easter day I have a firm knowledge that there is a plan for us and it is a wonderful plan. I have no clue what it is but I know that as I walk through my day I am never alone.
Colby is waking up so I better go but here are the pictures from the hospital.
Taking a little nap.
Easter baske goodies from the Easter Bunny. The hospital is great about giving the kids something on every holiday. Also the sherrif's dept brought around stuffed bunnies and had a huge rabbi that came with them.
Monkey socs for my monkey man.
The Easter Basket Colby got.
Watching a war movie with dad on the computer
This was the first time he was able to sit up in 36 hours because of the surgery. He was so happy to finaly be out of his bed!
Watching Wow Wow Wubbzy on his little DVD player that goes every where with us.
Before surgery waiting to go in, just killing time watching movies.