My bad ass 'bif baby

Thomas had shunt revision surgery at 8:00 pm, August 4th. He was NPO ALL DAY!!! This means he couldn't take any food by mouth. He had an IV in so he wouldn't get dehydrated, but that is not the same as eating and usually he is super cranky if I am there while he is hungry and I have the audacity to not let him nurse. For some reason though, he was perfectly pleasant. He played and laughed and interacted and made me doubt why we were even there. When the neurosurgeon came in, he seemed to be questioning if we should go ahead with the surgery, but the information that we had - the shunt tap not being able to get much fluid back and the ventricles being enlarged - all pointed towards something going wrong with the shunt. They took him to the OR around 7:30 and the doctor came out to talk to us about 10:00. He had a plastic bag with him that had something in it I didn't pay much attention to it at first because I was trying to read his face. As he began to speak, he said Thomas was fine, but his shunt was basically completely clogged  and he reached into the bag. He had brought the proximal catheter of the shunt to show us and on the tubing was the stuff that was clogging it, the choroid plexus. I love medical stuff, I wanted to watch my C-section, I don't get quesy with stuff like that, in fact I find it very interesting, but the thought that part of my baby's brain was in that bag and had been clogging his shunt made my knees a little weak. He proceeded to tell us that he was surprised by how clogged the  shunt was since earlier in the day Thomas was acting so normal. Part of me beamed with pride at my tough little man, but part of me felt nauseous that he could have been living with this pain in his head for quite sometime and we didn't even know, that maybe he didn't know what it was like to live without pain. The important thing is now the shunt was fixed and he was in recovery so we could go see him. He looked so completely exhausted when we got to him, but when he heard our voices he strained to see us and open his eyes. He even gave John a sweet little smile that seemed to take all the energy he could muster. He slept great that night and hit all his post op milestones the next day so they sent us home on Thursday! He is doing incredible. He babbles more and is very alert to everything going on around him. He seems to be brighter and more focused. This is the point where we could start to worry about how we will know if this starts to happen again, but taking my lead from one of Thomas's many lessons he has imparted on us, I choose to enjoy this time. Be here and revel in it. He's healthy, he's home and he's happy!! 

Ditching the stridor (hopefully)

So today is the day! They have moved the surgery to today. Hopefully last night was his final night as our little wheezie. In true Thomas fashion, he had a spectacular night. He was actually silent and breathing quite well...nothing like a little second guessing to make a surgery day start out right! They are doing an anterior/posterior cricoid split. Basically they are cutting the cartilage ring in his throat (the cricoid) in the front and the back then placing a breathing tube in to splint the ring and let it heal around the tube with a larger diameter to increase the size of his airway. As far as procedures go, it's relatively simple, they don't make any outward incisions, it's all done arthroscopically. The difficult part for this will be the recovery. He will need to remain intubated (with breathing tube in) for probably two weeks. During this time he will be heavily sedated, not really what you wish for your 7 month old. After the intubation is over, he will probably remain in the hospital for another week and a half recovering and being monitored. When it is all said and done, breathing should come much easier to him and his energy can go towards a more fruitful endeavor, like laughing or smiling. It's been a strange roller coaster of emotions to get here. We want the surgery, but don't. We, of course, want him to breath without difficulty, but don't like to wish a surgery on him, especially one with so much anesthesia. When they called yesterday to tell us that they were adding him on for today my heart leapt, both from happiness and trepidation. I haven't been able to separate the two ever since. It is an exciting time and a nerve wracking preparation. There is no experience that I have to compare these swirled up emotions with. To literally be excited and scared and anxious and hopeful and antsy and hesitant, is quite surreal. Unfortunately, there is no guarantee this will work and he may still need further intervention, but it's worth a shot. Will post here as often as I can to update on his progress.