Surgery and ICU 3/4-3/5

We drove up Thursday afternoon so that we could enjoy our evening together. We had dinner, ice cream and donuts, and then JT and Will finished out the night with pool time. Will had his first adventure in a hot tub and he loved it! He calls it the "hot pool" and has told several people that the "water went up my butt" (talking about the jets). He thinks this is hilarious and tells everyone!

Our new tradition...donut at Graeter's.

We pick hotels based on the pool. This one was a winner!

Pre-op started with a 5:30 AM arrival. Guess where we went - the 3rd floor! Oh how we hate the 3rd floor at Vanderbilt. We had a great nurse and Will was good through the whole thing. We met with anesthesia and pain teams. We discussed placing an IV to avoid the experience with the gas mask which terrifies Will. The vascular access team came in to place that. Will did very well during that because he was playing a bowling game on the Child Life Specialist's iPad. We met with Dr. V and rediscussed the procedure. He asked Will what kind of music he wanted to hear in the OR. Will thought for a second and said "Rocky Top". Dr. V was a little confused so we explained the great TN fan that Will is. Dr. V loved it and said he was a fan of the SEC and he would find it. Then soon after it was time to go. We were able to walk all the way to the OR with him. They gave him some Versed to ease the anxiety and cause a little amnesia. We gave him some hugs and kisses and left him with the team. It was 8:00 so we expected surgery to be over around noon. It would take an hour for positioning and neuro-monitoring prep, then surgery should be about 2.5 hours.

OR pre-op

JT and I both had an overwhelming sense of relief. Dr. V just puts us at ease that way. He doesn't talk like he is superhuman, but he has this amazing confidence that just makes us know that he will do whatever he needs to do and make sure that Will is taken care of. We went to eat breakfast, back to waiting room, went to eat lunch, and back to waiting room. After breakfast, we asked for an update and were told that the actual procedure started at 9:45. The prep obviously took way longer than expected. We got other updates throughout the surgery that they were still in OR and Will was doing great. We were told around 12:30 that they were finishing up and Dr. V would be out to talk to us soon. An hour went by. I checked back with the lady and she said it would be another 30 minutes to 1 hour. This was the first time we started to worry that something maybe wasn't going right. Finally we got to meet with Dr. V around 2:30. Will was done and headed to ICU while we were talking. Dr. V said Will did great the entire time. (I'm really not sure what took so long except maybe trying to close him up and working around the malformation.)


What we learned from Dr. V about the surgery:
Overall, he said the surgery went just like "textbook". They went ahead and gave him some plasma because of his Factor XI deficiency. This was to hopefully prevent any bleeding issues that may have come up. The incision was made so that they would be able to see L4 and L5 since that is where MRI showed tethering. The malformation on his lower right side of back was present and there was also some going up and around the spinal cord, but not touching the spinal cord. They were able to cauterize the piece that was close so that is no longer present. Even though he could see the big malformation, removing it isn't an option. There is lots of muscle and tissue mixed in and there would be a chance of damaging that. They did take a tissue sample from the malformation and will be sending it for genetic testing of the PIK3A gene mutation thought to be the indicator for CLOVES. (I'll talk more about that later.) Next he removed L5 and shaved off some of L4. He was then able to look into the dura. He easily identified the filum that was causing the tethering. It was tested and had no physiological function as expected. He cut it and sent it off for testing (I'm not really sure what for).  All other nerves for muscle groups were tested and everything was exactly as it had been prior to surgery. They closed the dura, pulled the muscle back tight (probably a big source of his post-op pain), and closed skin with absorbable stitches. They also applied durabond glue on the outside which will take a while to wash off. Dr V said he would check on Will once he was done with his next 2 cases. He was leaving and came back to tell us that he had the surgical team look up "Rocky Top". They found it but the speakers wouldn't play loud enough for Will to enjoy. In his spare time (no possible way that he has any of that), he said he would learn it for Will.


ICU
We headed up to ICU and got to see him pretty quickly. The anesthesiologist met us there to let us know that the IV line placed in pre-op when we were with him was inadvertently placed in an artery instead of a vein. They noticed it before putting him to sleep, so no harm was done. Vascular team will keep an eye on his arm to make sure there are no complications. I think the Versed was the only med placed in there before they noticed. That is the only issue that we are aware of. His breathing tube was already removed by the time we got to him so there was nothing really scary for us to see. We thought he was still asleep but he started talking very coherently. Because of the sedation med, he would act wide awake for a few minutes and then completely zone out. The sedation medication gave him a little bit of pain control, so he really didn't have a lot of pain issues at first. He was begging for some Sprite, but he couldn't have anything at all yet. He cried to JT, "But my voice sounds a little bit like a horse". Our nurse still said no drinking but gave us some sponges to dip in water for him to suck on. He was a little unsure at first because it looked like a green sucker, but he gave in and couldn't get enough of the sponges!

You have to look close, but he is holding the sponge sucker to help his dry mouth and throat. 

JT went to the car a brought Woof-Woof up to the room and Will's world was suddenly complete. The nurse wanted to reposition Will on his side. We were very nervous about this since he was supposed to be "flat on his back", but she said his spine just had to remain straight. He actually seemed much more comfortable on his side. Dr. V came in before midnight to check in on Will. (Just our thought: He had started his days with us at 7:00am and had cases that lasted throughout the day, and then came to see us. This guy is a machine!) We tried to get some sleep too, and then the nurse came in at 11:30pm and told us we had to move rooms. We would be staying in ICU but more of a step-down unit. Will was doing so well and a sicker kid needed the room. We couldn't complain much since we had a child doing well enough to be chosen to move. We liked our new room. There was only one other patient in the pod so it was very quiet! We got situated and tried to sleep again. JT slept fairly well, but Will didn't so I was up with him. He was starting to hurt and begging for water. I let him take a sip from a straw and we watched Cars (for the 3rd time in 12 hours!). At 3:15am I convinced him to try to sleep so I could too. Will and I got a little bit of rest and then both took a good nap the next morning. It is so hard to sleep in a hospital! Someone is always coming in, or the IV machine is beeping, or the oxygen monitor fell off, etc.
Saturday afternoon the sedation medication was stopped, catheter taken out, arterial line removed, and nasal oxygen off - Will was much happier! All he has left are 2 IVs which unfortunately aren't allowing his blood to be drawn for labs, so he has to get poked for those - this makes him not so happy! He threw up Saturday morning from the combo of anesthesia and nothing in his stomach. He felt better and we were able to start feeding him. Goldfish were his selection.
Saturday evening we got moved again (3rd room in 22 hours!), this time to the neurosurgery floor where we will hang out until we get out of here.

When we had our long stay at Vanderbilt a few years ago, JT drew our family pic on the board. We had to have that again. So here is JT, Sabrina, Will kicking a soccer ball, Evie eating a squeeze, and Maggie being chased by Evie.