Shunt surgery is all done and was a success. It turns out that the valve was partially (well mostly) blocked. Dr Y took out the old shunt and put in a new "fancy dancy" one and we should get to go home tomorrow.
We still have to see Dr H for the sleep apnea but things should get a lot better now so YIPPEE!!!!
Wednesday, July 22, 2009
Tuesday, July 21, 2009
Sleep Study Results
OK, Dr. H's nurse called and gave me the results. He's got mild obstructive sleep apnea. (Not really a surprise) We've got an appointment on the 12th so we can decide what to do next and give him time to recover from tomorrow's procedure. I'm packing for 2 days even though they say it's a 23hr stay. He rarely "plays by the rules" so hopefully we go home on Thursday but I won't be surprised if it's Friday. Dad's having back surgery on Friday so as long as I can leave St. V's and stop at Community North we're good to go. Off to finish packing all the "must have's".
Sunday, July 19, 2009
Surgery is scheduled
Grrrrr...well, Boo is having exploratory shunt surgery on Wednesday. The neurosurgeon & I are pretty sure it's not the shunt but we need to be positive since that's the "easy" fix. If all is well there then the case kicks back to the new neurologist and she gets to try to figure out what's wrong and why we are having all these issues. Don't you just hate it when you can't figure out what's going on with your child!!! Oh, and the sleep study results came back but the doctor didn't give them to me. They sent them to Dr. H and will have her do it. What's up with that? We haven't seen her in almost 3 years. They must have seen something weird though. I'll ask about that while we're at St. V's too. (I'd better make a list!)
On a happier note...Gracie is away at church camp. It's her first time doing anything like this so I hope she doesn't get too homesick. I know she's really going to enjoy it and she was super excited that a spot opened up (4 days before they leave). I wasn't sure if we could send her since its several hundred dollars and daddy's still laid off. God bless my parents! They paid her fee (the church scholarshipped part of it) and sent some spending money too. They sent my nephew last year & wanted to send her but she wasn't ready then. Funny, Z is 4yrs younger but was ready first. I laugh at my sister 'cause Z is a carbon-copy of Gracie. He does spend more time away though since mom & dad are divorced so that came easier for him. Anyway, we got on the camp website and things look so nice...I'm really excited for her. I only went to camp 1 time and it wasn't church camp...it was a girl scout camp. It was nice but I didn't know anyone and definitely could have had a better time. Gracie is going with the youth group and she's become good friends with several of the girls so she's got support from others who've done this before. We talked about it on the way and both feel like there's going to be a big blessing for her there. After all that's why this spot opened up at the last minute and she was the only one who still "needed" to go. God works in unusual ways sometimes but he always gets his point across if we just pay attention.
On a happier note...Gracie is away at church camp. It's her first time doing anything like this so I hope she doesn't get too homesick. I know she's really going to enjoy it and she was super excited that a spot opened up (4 days before they leave). I wasn't sure if we could send her since its several hundred dollars and daddy's still laid off. God bless my parents! They paid her fee (the church scholarshipped part of it) and sent some spending money too. They sent my nephew last year & wanted to send her but she wasn't ready then. Funny, Z is 4yrs younger but was ready first. I laugh at my sister 'cause Z is a carbon-copy of Gracie. He does spend more time away though since mom & dad are divorced so that came easier for him. Anyway, we got on the camp website and things look so nice...I'm really excited for her. I only went to camp 1 time and it wasn't church camp...it was a girl scout camp. It was nice but I didn't know anyone and definitely could have had a better time. Gracie is going with the youth group and she's become good friends with several of the girls so she's got support from others who've done this before. We talked about it on the way and both feel like there's going to be a big blessing for her there. After all that's why this spot opened up at the last minute and she was the only one who still "needed" to go. God works in unusual ways sometimes but he always gets his point across if we just pay attention.
Wednesday, July 8, 2009
And now we wait...
Well the testing, at least this portion, is finished. Now we get to wait for a few days or weeks (depending on the doctor) to get the results. Boo's feeling ok I think. I have noticed a few more oddities but, again, nothing that screams "shunt" or otherwise. Now I'm adding yogurt to his diet because of extremely loose stools. With all the meds he's on he should be constipated...I just don't know. You know that "mom sense" kicks in and you know something is wrong but can't figure out what it is...well that's me right now. I've done the Medical Assistant job and gone thru all the symptoms...nothing relates. I don't feel too bad though 'cause the Doc's don't know either. Hopefully one of the 2 tests we did Monday & Tuesday will give us answers. If not we keep testing but that could mean a stay in the hospital and I'd really like to avoid that. I'm going to sew up some "hospital friendly" clothes & pj's today and tomorrow just in case. Time to get busy...
Saturday, July 4, 2009
Boo's having problems
Boo is having some neurologic issues. We're not sure what's going on because nothing is pointing to any specific problem though he's showing many signs of something. We're thinking the shunt may be his problem but not sure. He's got health problems but they aren't usually that active. Until recently (late May) it's been pretty typical stuff-no big deal.
Now he's still in a good mood most of the time but he's more fussy, not eating by mouth, having sleep changes, skin color gets just slightly "ashy" for no reason, and his muscle tone is crazy tight. We're going to have a sleep study Monday night and a CAT scan on Tuesday morning.
I figure the shunt needs to have a different pressure setting but none of his specialists are really sure so we're doing all the "rule out ..." tests and then we get to see the neurosurgeon early. We're not due to see him until November.
This time last year he had brain surgery and there is the possibility that we will again if the cyst in his brain has grown and is the problem. I know in my heart that he's going to continue to be fine so I'm not too worried but I do want answers so we can do what's needed to keep him happy and healthy. I'll let you know more when we find out something.
Now he's still in a good mood most of the time but he's more fussy, not eating by mouth, having sleep changes, skin color gets just slightly "ashy" for no reason, and his muscle tone is crazy tight. We're going to have a sleep study Monday night and a CAT scan on Tuesday morning.
I figure the shunt needs to have a different pressure setting but none of his specialists are really sure so we're doing all the "rule out ..." tests and then we get to see the neurosurgeon early. We're not due to see him until November.
This time last year he had brain surgery and there is the possibility that we will again if the cyst in his brain has grown and is the problem. I know in my heart that he's going to continue to be fine so I'm not too worried but I do want answers so we can do what's needed to keep him happy and healthy. I'll let you know more when we find out something.
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