So today we headed to Salt Lake and Billy had a CT scan and then we went to see the Neurosurgeon for our first follow up visit since leaving the hospital. The doctor was overall please with Billy's progress. The doctor said he was doing much better than most people at this stage. He said that Billy is no longer at risk for a re-bleed which was really great to hear and that he didn't have any restrictions on how much weight he could lift (If you forgot, when he came home his instructions were to pick up nothing heavier than 10 lbs.) The doctor wants him to start exercising about 45 minutes a day (walking or riding a exercise bike) and slowly begin doing things he did before as he feels up to it. He said he could start driving, but for the first couple of weeks I have to be in the car with him until I feel like he his ready to drive on his own (He said I should treat him like he just got his permit, lol. Now I have 2 permit drivers, Billy and Logan!!) So that is the summary of the good news!!
Now the not so good news is that Billy has Hydrocephalus. The following are details about Hydrocephalus that I got off of a Neuro website which explains it better than I could. "Hydrocephalus is the buildup of too much cerebrospinal fluid in the brain. Normally, this fluid cushions your brain. When you have too much, though, it puts harmful pressure on your brain.
There are two kinds of hydrocephalus. Congenital hydrocephalus is present at birth. Causes include genetic problems and problems with how the fetus develops. An unusually large head is the main sign of congenital hydrocephalus. Acquired hydrocephalus can occur at any age. Causes can include head injuries, strokes, infections, tumors and bleeding in the brain. Symptoms of acquired hydrocephalus can include
Headache
Vomiting and nausea
Blurry vision
Balance problems
Bladder control problems
Thinking and memory problems
Hydrocephalus can permanently damage the brain, causing problems with physical and mental development. If untreated, it is usually fatal. With treatment, many people lead normal lives with few limitations. Treatment usually involves surgery to insert a shunt. Medicine and rehabilitation therapy can also help."
So this explains why Billy still feels so much pressure in his head and why he wants to sleep 12 hours or more a day. Fortunately, Billy doesn't have all of the symptoms, but he has enough that the doctor prescribed a medication that will prevent his body from producing so much spinal fluid. The hope is that if his body doesn't produce as much, his body will then be able to catch up and eventually start reabsorbing the excess fluid. He has to go back in 4 weeks to have another CT scan and then see the doctor again. If he still has hydrocephalus then the doctor said we may have to start considering putting in a permanent shunt. This would require another surgery (nothing as major as before) where they will place a tube in his head and then thread it under his skin down to his stomach where the excess spinal fluid would drain and then be excreted by the body. We are praying very hard that this medicine will work and then Billy's body will begin to work as normal so he doesn't have to have a permeant shunt. Obviously it's not the end of the world and people live normal lives all the time with shunts, but I really just want to avoid this if at all possible. Don't get me wrong I feel so blessed to have Billy alive and well, but this would just be one more thing! The doctor also said he could not go back to work until after our next appointment January 3, 2012 and if all goes well he will still have to start back part time and then build up.
So after today I have mixed feelings. I'm very happy he is doing so well and overall doesn't have any deficits, but I really wasn't expecting the hydrocephalus so tonight I had a little break down. I'm trying really hard to be strong and positive, but I guess sometimes a girl's just got to have a good cry. After 6 weeks of this you would think I would be more prepared, but I really wasn't expecting this because of how good he has done. I will just keep praying and I know my Heavenly Father will get us through this and one day we will look back and be thankful for this growing opportunity.
Oh my goodness...Lindsey! So much is on your shoulders right now. It is so challenging to be a mom, but Your also an .employee and nurse on top. You are amazing! I miss you guys. Your in our prayers always. Your entitled to a few breakdowns you know girl.......if you didn't once in awhile, you would not be normal. Wait........you were never normal....so I'm not really making any sense here. (: Love ya!
ReplyDeleteTawny, thanks so much for making me laugh. I miss you so much and am sorry I've not been better at keeping in touch. Thank you for your prayers. I saw the cute picture of your family and everyone is so cute and grown so much. Tell everyone hi!!
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