Thursday, March 19, 2015

Part 3

When Evan had his first shunt surgery at 3 months old, his surgery was sometime in the middle of the day. He woke up a few hours later, started drinking bottles again at night, and went home the next day. That was typical.

After Evan had his shunt revision on Saturday, he didn't wake up. That was not typical. And anytime you do something atypical on the doctor's watch, there's drama.

The report from the OR was that surgery went well. They replaced the entire shunt because neither the valve to pick up fluid in the brain or the tubing that drains the fluid into his abdomen were working. Evan returned to the room with a bandage on his head and a breathing tube in place. He looked so peaceful and pain free, especially compared to the unstable state we had last seen. Now we would wait for the anesthesia to wear off. Isaiah asked the nurse if there's a point where we should try to wake him up. She said, "No. He'll wake up in his own time. There's no reason why he wouldn't, right?" We were so excited to see our boy get back to his normal self.

I should've tallied how many people came into our room during the next several hours to check in and, on finding him still asleep, told us that everyone metabolizes the medicine at a different rate and his body must take a little longer, and blah blah blah. Finally, later that night, a doctor came in and asked us if we were concerned that he wasn't waking up yet. We said yes. She said she was concerned as well. There were two plans. First, do a CT scan to check that the new shunt is working. Second, do an EEG to check that his brain is working and isn't having any silent seizures. I think Isaiah and I would both agree that the next few hours were the worst moments of this whole experience. We had a large range of thoughts and emotions that can't be fully explained.

Why isn't he waking up? Did something go wrong during surgery? I trusted Dr. Gupta. Is my child brain-dead? Will he ever wake up? We talked to each other about stories of people who were in comas or a vegetative state for years and remembered things from that time. Could I handle taking care of Evan if that happened to him? We started reminiscing about all the funny/sweet/cute things that Evan "used to do," not knowing if he'd ever be able to do them again. I got extra emotional when Isaiah hugged me and asked, "It's a good thing we're sealed together forever, right?" In his mind Evan was already gone.

The CT scan came back clear. The shunt was working great. His ventricles were down to the normal range. The EEG would be our moment of truth. Someone came and glued all the wires to his head and wrapped it up with this terrible looking gauze beanie. I tried to sleep but couldn't. I didn't want to think about the news I could very soon potentially be given and I wanted to think he'd just suddenly wake up, but for the first time since learning Evan's diagnosis nearly 3 years ago, I was scared for his life.

The EEG showed normal brain activity. He's alive! I've forgotten the details of that night, but eventually little man started twitching fingers and moving his head. Several times we rushed to his bedside to try to get him to respond to something. Evan! Are you awake? Evan, it's Mama. Wake up, honey! Can you open your eyes? (No response) Can you do your cheesy smile? It was subtle, but his eyes squinted like he does when he smiles real big. Isaiah and I saw it and knew right away that he was there. Then there were a few times the nurse did "oral care"--a little sponge brush in his mouth--and he started smacking his lips. That was another reassuring sign. He also responded well to the iPad and was quick to find his favorite games even though he could barely move his arms and his eyes were mostly closed. Apparently I have the slowest waking-up-from-anesthesia child in the world, but I was so relieved that he was waking up at all.

It took over 24 hours after coming back from surgery for Evan to be awake enough for the doctors to feel comfortable enough to take out his breathing tube. On Sunday afternoon it was removed. Once it was out and he could talk, he quickly said, "Want drink. Milk." and "Sit lap." He had to wait a few hours to eat and drink, but we did get to hold him. His head was super floppy and right after I picked him up he wanted to lie down. Since he had gone from such high pressure in his brain to such low pressure, it was going to take a while to adjust. Typical symptoms of pressure change are nausea and light-headedness. From this point we knew that to be discharged he needed to 1) Eat/drink regularly, 2) Get off oxygen, 3) Poop.

On Monday Evan was happy to eat a regular diet and he was weaned off his supplemental oxygen. He also easily passed the poop test. There was a little set-back during dinner when he stuffed a little bit too much pizza in his mouth which made him gag and throw up. We were reminded to take it easy with the foods. Then we were told he needed to be back to most of his normal strength and activity level before we could leave. That was discouraging, seeing how he couldn't even hold up his head. I couldn't imagine him sitting up, let alone walking. But Tuesday he surprised me by sitting up a bit. We were feeling excited and took him on a ride in a little radio flyer car in the hallway. When we tried to put him back in his bed he threw a fit which made him throw up again. Later that day he was coughing and he threw up again. We took it really easy Tuesday afternoon and he finally held in lunch and dinner. We went to the playroom Tuesday night and played with the therapy dog. He seemed to love it. Wednesday morning we were told that if he kept his food down we could talk about going home in the evening. He sat up for a little while during OT and when he went back to his bed he threw up again. No Wednesday discharge. This morning he's already thrown up his before-breakfast snack so, again, we're not off to a great start. But once we can manage this issue we'll be ready to bust this joint. Since his sensitivity is probably related to his body adjusting from surgery it will probably just take time. Specific prayers for no throw up would be greatly appreciated. We've been feeling so loved and watched over already and know we'll be blessed with the things we need in the Lord's time. I anticipate our next update will be news of going home!


  1. When I saw him pull himself up to the piano and pluck out a few notes (while turning the Children's Songbook pages) I saw that our little angel is definitely on the mend. I am so grateful that he was born of goodly parents who know no limit as to what they will do for him, Evan --we love you so much, it's hard to consider that Father and Jesus love you more.

  2. This case is very similar to my nephew who has recently got his shunt surgery. The hospital staff was too co-operative with all his making a fuss attitude. But eventually everything got settled and he seems doing a lot better.

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