June 14, 2012 Surgery Day

Well, last night, Dr. Sandwell came in and told me that they had decided to go ahead with the externalization of the shunt. He almost sounded like the neurosurgery team was conceding, and so I asked him if we were doing a dangerous surgery for no reason. He said that even if the shunt came back completely uninfected, her body would still heal quicker WITHOUT a foreign body inside. I really like him. Where Dr. Silberstein is very loud and tell it like it is (which I like also), Dr. Sandwell is more quiet and reserved. He stands there and just listens. He said we would actually be moving to the PICU before the surgery even happened, and would not even have to go to a downstairs OR unless something came up. We would do the whole procedure in the PICU sterile procedure room.

Well, this morning was pretty much terrible. Grace is tired, hungry, and thirsty. She woke up about 6 times in the night, just screaming and hollering. These nightmares are terrible. She'll lay there and just cry- "No, not a needle!! I don't want a pokey! It hurts!" It is so heartbreaking to hear your child lay there and cry and cry. And then when they DO come in to do these things. Sometimes, I have to leave the room. Her veins are so shot from so many sticks and so many hospital stays...there are times it takes 8 or 9 pokes.

Anyway, we waited all morning for them to tell us what time we were going. The one antibiotic that she is on makes her mouth taste terrible, and she just begged for water. Begged and begged and begged. No one should ever have to be put in the place where they HAVE NO CHOICE but to deny their child's basic needs!! At 10:30 the nurse came and told me that we would be going to the OR at 11:30. At just about the same time, Grace had another crazy spell! Her doctor wanted to send her down for a repeat CT at that point, because she was starting to worry about whether the pressure in her head was increasing and causing seizures. However, she was scheduled for surgery at 11:30 and it was 11am. So, Dr. Blatt called Dr. Silberstein and asked him what to do. He said the best thing to do in this case was to go ahead with the externalization. If they got in there, and her shunt was draining well, they knew that the part in her skull was still working. If not, well then they would have to do an external shunt in her forehead also. The PICU team came right at 11:30 to get her. I spoke with the PICC nurse, Cheryl first. She told me that she does NOT even stick a kid if she can't find good access.Then Dr. Sandwell and Dr. Rubinstein came in. Dr.Rubenstein would be the one to administer the sedation. All he planned to use was propophol. He was 100% prepared to intubate her if the need arose, but would not do it "just because". Isn't that interesting? They wouldn't do a sedated CT without intubation, but surgery he would. Hmmm...seems to me someone didn't want to damage her lungs anymore than necessary. I was in the room right up until the point that she fell completely asleep. Cheryl did an ultrasound to look for PICC access and found nothing. She stayed in the room as a backup nurse, but told me right then she would NOT be poking her. I left the room and went to the FREEZING cold playroom to wait.

The procedure was only supposed to take an hour. About 45 minutes into it, I started getting REALLY antsy. Every little movement I saw scared me. At one point, I heard "Stroke team...trauma bay. Stroke team..." I had myself convinced that it was her...even though she was in the PICU not the trauma bay!! After what seemed like forever, I saw Cheryl. She came and told me she had one GREAT, was awake, and had asked for macaroni and cheese!! When I walked in, she had fallen back to sleep.I went over and squeezed her hand and kissed her on the cheek. In true Grace fashion she opened her eyes and said, "Mom did you bring the macaroni and cheese?" When I told her no, she closed her eyes real tight and said, "just call Pastor. He'll bring me some." It was hysterical. They had let her baby jaguar stay with her for the operation, and I think that made her have him in her mind. It was so cute, though. Then Dr. Rubenstein said that since the incision was just above her rib, maybe it hurt her to breathe deeply. Unfortunately, we couldn't test that theory because pain meds have a bad habit of suppressing the respirations also. Last thing we needed. So, we waited the night out, with monitors blaring and no sleep.

IV count- 11