Isaiah 7.17 : Updates, etc.

Blood, Sweat, and Tears: that's pretty much the best way to sum up the last 24 hrs. The sweat was no big deal, just a ton of yard work in the heat and humidity yesterday. The blood and tears are another thing. To start it off, last night we had Isaiah's long overdue sleep study to see if he will need additional surgeries to clear his airways, check for apnea, and see if he may need a CPAP or other breathing assist at night. We were not looking forward to it. We know how crazy Isaiah is in his sleep and that's partially why he's still sleeping in a crib since he thrashes about so much. He had something like a dozen different wires mainly attached to his head, a pulse ox on his toe, bands around his belly, and a breath sensor taped under his nostrils. Needless to say he wasn't too happy and was up seemingly half of the night crying in frustration and annoyance. He really hated the breath sensor to the point when we were holding his hands he would try to get ...

Rachel was at Dr. Hudgin's this morning to get Isaiah's staples out of his head and he didn't like how big Isaiah's head was looking. It seems he may have hydrocephalus like they feared we would have to watch out for. Rachel is now sitting at Children's waiting to have another CT scan done and she'll be heading back over to the doctors office so they can look them over and determine what the course of action is if he does in fact show signs of water on the brain. I'm still sitting at work here on my lunch hour, but its a bit nerve wracking. We don't know anything for sure as of yet, but I felt like I should do an update today. Other than this little scare, everything has been going quite well with his health. The incision/scar is looking good, he's been a bit less fussy lately and he's been sleeping quite well. We actually had to wake him up for his nebulizer and feeding over night, rather than him waking up first. Before this whole hydrocep...

We are in all likelyhood going home today. His fever has gone down and he hasn't been over 100 since around 4pm yesterday. His bandages were taken off yesterday morning and we got to see his new face. He does look different, but much of that could also do with the fact he's still very swollen and he will be for the next few days. He's got something like over 50 staples (we haven't counted them exactly yet) across the top of his head. When his hair grows in the zag zig scars should be nearly invisible, it just means he can't shave his head. For the time being we figured if kids looked at him funny b/c of his scars we'd tell them he's Harry Potter's long lost brother. We can only sponge bathe him for a while now and his staples will be in until a week from tuesday. The thing we have to worry about now is hydrocephalus (water on the brain). Now that the pressure in his brain has been temporarily relieved there is the potential that his ventricles ...

Well today has been interesting and eventful. I went back to work today and stopped by to visit Mom and Isaiah at lunch since I had a site visit nearby that I was able to schedule right after lunch. Hannah and Rachel's Mom spent pretty much the whole day here with her which was good because while he did well through the surgery, he's got a good ways to go for recovery. He needed another blood transfusion this morning since his hemaglobin levels were low, but that's pretty common due to the bleeding involved in head surgery. He's been pretty fussy and up most of the day, but he hasn't needed morphine since yesterday at 4pm, just his normal dose of tylenol every four hours. We did have a bit of a scare this evening though. About 8pm when they came to do his vitals they realized he had a fever of 101.2 and in all the fuss of getting him out of my lap and back into the crib his IV's came out of his arm. His antibiodics were being administered through his IV as...

We're in his room with him right now! He's rather puffy right now and his bandages come down to the tip of his nose, but he's here with us. Everyone says he's done very well. His bandages almost make it look like he's just got a big white winter cap on pulled low on his head. He's pretty quiet right now since he's still sleeping off some of the anesthesia. He's got an IV going to give him some extra fluids and he's on oxygen for the time being. Both of us are rather hungry since we could barely eat anything this morning and now that its all over we're realizing we haven't really eaten much of anything since 6:30 this morning and its just past 2pm now. We're still trying to figure out the lay of the land here in the PCA section of the hospital, but it sounds like one of us should be here at all times to watch over him, which puts a little monkey wrench into our plan of getting Rachel out to the RPA 15th anniversary party on Friday ...

So the surgeons came into our little pre op room about 20 minutes ago to say everything went well. He's currently getting all bandaged up and going to the recovery room for about an hour. He had his sagittal bone completely removed, his coronal sutures opened up and they moved his orbital rims (the area around his eyeballs) forward all to give his little brain room to grow and make sure he'll be able to close his eyelids as he grows. He's got some plates and screws in his head that will all dissolve in time so there's no need for them to go back in to remove them. He also won't need a helmet as of yet since it would actually constrict things further and this surgery was all about opening things up. He took about 180 cc's (6 oz) of blood and will probably need a bit more as he recovers, but he's doing so well they say that he'll probably get to skip the ICU and go straight to a regular room in the neurology wing. We should be able to take him home s...

Thanks to the generosity of my work, I've got a laptop with me today. Mostly to check my emails since I've got a project just about complete that needs quick answers. Unfortunately I can't seem to reply on my work's exchange server so I'm taking a break to update everyone. First off we had to stop feeding him milk or formula at midnight last night so we kept him up as long as possible since he usually only sleeps 5 hrs straight after the first time we feed him and put him down to bed. Sure enough he woke up at 4:30 hungry and we were able to give him some pedialyte to hopefully tide him over, which suprisingly worked! We've been at the hospital since 7am this morning and anethesia took him away at 9am to prep for surgery. They started the actual craniotomy at about 10am and we're just waiting now to hear when he's done. He'll go to the recovery room after that and then stay here for the next few days. We were told yesterday he's not going to...

Well his first surgery is officially set now. He'll be heading into Children's @ Scottish Rite at 9am on September 10, 2008 for his first cranio-facial surgery we described a couple posts ago. He's getting real big and eating tons lately. Rachel and I noticed yesterday night how plump his cheeks are getting and that the little ripple rolls are gone under his chin and replaced with one giant double chin. He's still cute as can be and all this growing hopefully will help him be better suited for the surgery. The only thing we're worried about is all the growing may mean his brain is trying to grow at the same rate with no where to go which could explain his extreme crabbiness lately (even moreso than it was before my Mom was in town) Hopefully we and he can make it through the next 2 weeks with some semblance of sanity.