What a day we had yesterday. Hopefully that is the worst of the pain, fear and sadness that the Michalanko family will ever know. Not a surprise to anyone, our sweet boy made it through the surgery with absolutely no problems. He was wide awake sucking his binky and checking things out before they took him away, he's so smart he actually puts his little hand up all by himself to hold the binky in his mouth, it's incredible. In any event, the surgery itself only took about an hour and it was undoubtedly the most terrifying hour of our lives. He came out of surgery still on the ventilator and he remains on the ventilator this morning. The respiratory team has been sticking his heel to get blood gases overnight to check is Co2 levels and they are stable (Co2s in the 50's) but he is not really awake yet so they are hesitant to wean his settings or attempt to extubate him yet. Because he is still not fully conscious, his drive to breathe on his own is still weak and he is perfectly content riding the vent at the moment (meaning he's not really breathing over it but instead letting it do the breathing for him). Of course we are praying that doesn't last for too long because he longer he stays on it, the more difficult it can be to wean him off it and not only is it causing additional lung damage but the increased oxygen can cause more problems with his eyes (ROP that I mentioned a few posts ago). He opened his eyes a few times last night and was moving around occasionally and once he realized that breathing tube was back down his throat, he didn't like it one bit and began gagging and trying to pull it out (a good sign). He also spit up a few times but the doctors said this is perfectly normal and they are not concerned about it. It has certainly stirred up bad memories seeing him back on that ventilator and dealing with blood gases and vent weans and both Logan and I are going to fight like crazy today to get him off it and back on his cannula.
He has been NPO (meaning no breastmilk and only clear IV fluids) since 3 am Sunday morning and we are all eager to get him back on his bottle feeds so he can gain some critical weight and strength to aid his body's recovery.
His head circumference has dropped slightly and hopefully will continue to do so if the shunt is working properly and draining the CSF into his abdominal cavity. He has a large incision wound on the left side of his head along with two large bumps where the double resevoir was placed in his ventricle and then you can see the plastic tubing that was channeled underneath his skin down his neck and chest and then there is a smaller incision on his belly where the plastic tubing is coiled in his abdominal cavity. Essentially the shunt's purpose is to drain the excess CSF from his brain and into his belly where it can be harmlessly reabsorbed by his body. The doctor indicated there was a large amount of pressure being exerted on Logan's brain from the hydrocephalus so this should serve to be of great relief to any headaches our precious baby may have been suffering.
It was an absolutely excruciating day for me as well as my physical health took a turn for the worst as the day progressed. I hadn't slept much because we had to wake up at 6 am on Sunday morning for Logan's transport to CHOP and then we awoke at 3:30 am yesterday morning to be at the hospital by 5:30 am for the surgery so I began feeling extremely ill as the day wore on. I was forcing myself to eat (since I am pumping for my boys and my nutrition is vital to their well being) and I suppose because my stomach was in knots all day and not really interested in food, it didn't take very well to it. We didn't arrive home until 9:30 or so and the minute I walked in the door, I was forced to run to the bathroom and threw up everything I had eaten that day. I then crawled into bed and passed out cold until this morning, thus the reason I couldn't update the blog last night. I feel much better today though and am ready to push on through another day of the unknown with our boys.
On the other side of the city, our Landon continues to do wonderful and took every single one of his feeds yesterday by bottle so they have removed his OG tube and his beautiful face is now completely free of everything, no cannula in his nose and no feeding tube down his throat!! It looks like he may be home with us as soon as the end of next week, or soon thereafter, though it maybe on a monitor since he is still having 2 or 3 bradys a day. I can't even conceive of that thought right now because I don't want to get my hopes up until I know for certain it's really going to happen.
So we are not out of the woods yet until we know that Logan's shunt is working properly and no infections are present and the next 48 hours will be critical in telling us that. Then we can focus on getting him off the vent, back on his breastmilk and back to Pennsylvania Hospital with his brother who misses him dearly. Please continue to pray for our remarkable little boys.
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