Charlie had surgery on Oct 3, 2014 to insert 2 tissue expanders in hopes of removing the last section of his nevus. The surgery went smoothly and they finally were able to prevent the breathing issue he has had in past surgeries. Briefly, he was given Propofol when he was 11 days old for his MRI and didn't wake up for 6-8 hours. He didn't really have a reaction to it, it was just that his little liver couldn't break it down and rid his body of it and he also had it for 4 hours (the procedure was much longer than expected) and so he had a lot of Propofol in his system. But, the anesthesiologists considered it a reaction and therefore wouldn't give him Propofol for subsequent surgeries. So they gave him inhaled anesthetic instead which would irritate his airway and cause him to have trouble breathing after surgery. Well this time they switched to Propofol which is an IV anesthetic and he did great! He had no breathing issues at all after surgery.
We had to stay over night just in case of the breathing problems and he also got out of surgery late in the day so it was best to stay. We got a private room which was great but only one sleeping chair so Kelly had to sleep in the car. Overnight he received antibiotics and pain medicine and was feeling better by morning. We were given one last dose of antibiotics and sent home.
All ready for surgery!
Out of surgery and trying to wake up
The next morning he was feeling much better :)
Goin' home!!
Most of Saturday (the day we went home) Charlie was okay. He didn't feel great but he was doing pretty good. On Sunday morning though he woke up unhappy and was crying or whimpering the whole day. I thought it was a result of him having surgery so I left to take Lily to a ballet thing and left him home with Kelly. When I got back I could tell something was REALLY wrong. His head was so swollen it looked like it was going to burst. He was super warm and his head was bright red. I took his temperature and it was 103 degrees. I called the doc and he prescribed some oral antibiotics and asked us to come see him Monday afternoon. Here are some pics of his head on Sunday.
So Monday we headed to SF to see Dr. Hoffman. But first we had to drop daddy off at the Giants game because they were about the clinch a playoff spot. So it was just Mommy and Charlie and as soon as the doctor saw him he said he needed to be admitted to the hospital for 3 days for IV antibiotics. He was worried how quickly the infection came on (he had antibiotics in the hospital up until Sat morning but by Sun morning the infection was brewing). This came as a huge surprise so we had nothing but the clothes on our backs. But we stopped at the gift shop to buy a phone charger and headed up to the 6th floor. We were checked into a (private) room and got settled in for the night. The hospital was very accommodating and gave Charlie some pajamas and some scrubs for me. In the morning when Daddy got there I headed to Target and bought new clothes for Charlie and I so that we could be comfortable. We started to learn the ropes of staying in the hospital (in the past we only stayed one night). Charlie instantly fell in love with the playroom which was open for 3 periods during the day. There were puppet shows, 49er players, therapy dogs, and every single toy and art project you could imagine. It was actually very fun for Charlie! The hospital gave us all the toiletries, laundry services, etc. that we needed.
Unfortunately Charlie had to get his IV taken out and put back in a few times. This really seemed to traumatize him (I've realized lately exactly how much it traumatized him). He had a love hate relationship with the nurses. He really wanted to like them and loved saying "hi" and "bye" to them but when they walked in and put gloves on he would freak out (even if they weren't doing any procedures).
Here are some pics from our stay in the hospital:
Waiting to see Dr. Hoffman
Admitted to the hospital
Time to go home!
On Monday Oct 20, 2014 we started our fills. The doctor is starting out slow so he has been putting 20 cc's in each. The back expander can hold up to 300 cc's and the front can hold 500 cc's. The bad news is Charlie is terrified of his fills. With our last round he never even made a peep when he had fills. He just sat there very still and let the doctor fill them. Well this time as soon as the doctor put the gloves on he lost it. He screams, kicks and has to be held down. Once the fill is done he is totally fine. He loves getting his stickers and high fiving the doctor.
Charlie had his second fill on October 27 and his third fill this past Monday, November 3. I didn't take pictures the first couple fills but here are some pics from the third fill.
