We're Still Here

Sorry it's been a few days since our last post but things were happening kinda fast and we were waiting for break to report. So I'll recap the last couple of days.

Thursday was even better than Wednesday. Jackson slept great Wed night, only waking once. Then again around 6:30am and we noticed that the CSF was still leaking and had increased a bit. He was in a good mood and ate a LOT for breakfast, I wasn't sure where he was putting it all. After that he wanted to go to the playroom. While we were there we had a consult with PT and speech (since he's been in here so long they want to make sure that he is functioning age appropriately). After awhile he started to get a little tired and wanted to go back to the room. It doesn't take much these days.

When we got to the room the therapy dog was here to play. She was a little Yorkie, named Gracie, and Jackson LOVED her! He had such a big smile on his face when she would kiss him. He sat up with a little help and pet her and gave her scooby snacks. It was too cute and well needed!

There was a rumor that we might get to go home but only if the fluid stopped leaking. So when Gracie left we tried to take a nap and while he was sleeping the nurse attempted to glue the leak. Unfortunately Jackson was not having it and the more she tried to glue the more he cried and that produced more CSF which made it leak more. After two things of glue we gave up on that idea and decided we would wait for the NS who was suppose to come by later that day.

Jackson was not sleepy or was afraid to go to sleep after that so we walked Nana and Papa outside and said goodbye to them then went to the playroom again. It was a little crowded and Jackson didn't want much to do with the other kids so we went for another walk to see the fountain in the hospital and then went back outside. We found some construction going on and he was able to watch some tractors and see a dump truck, that made his day! All that excitement and being outside in the heat quickly took its toll and he wanted to go back to our room. He fell asleep and we waited to see if we would be able to go home.

When the NS finally came by to look at the leak he said he would have to go to surgery to repair it, which meant we weren't going home. Surgery #5 (this visit) was at about 10pm Thurs night and they filled in the burr hole from the ICP monitor and then stitched it up. We finally got back to the room and settled down around midnight. Around 2am he started to pull out his hair again and was getting pretty ill. We gave him some Lortab and a little morphine to settle him.

A little after 6am the NS came in to check him and ordered another CT. He was really out of it and was hardly opening his eyes or talking. The CT didn't show any difference but his ventricles are rigid and don't show if there is an increase in pressure. The NS then tapped his shunt by inserting a needle in the top of the valve and removed fluid that way. When he put the needle in fluid came out right away and he said that there definitely was a lot of pressure. Once he removed the fluid Jackson was a little more alert and was talking a little. The fluid that he took out he sent to the lab to check for infection. We didn't have the time (2-3 days) to wait for a culture but they did other tests and he said the cell count in the fluid showed that there was an indeed an infection.

Surgery #6 was last night around 7pm and they externalized the tube that runs into his abdomen. So now there is a tube coming out of his chest that drains into a bag. They also shaved his head, per our request. He looks more like daddy now. :) Since surgery he has been in a good mood and very alert. At midnight last night he had a craving for goldfish crackers and of course at that time we couldn't find any so he had to settle for some chef boyardee mac'n'cheese. He ate almost the whole container and then wanted to play with his toys. When he did finally fall asleep he slept well and woke up this morning wanting more goldfish. Our nurse found some while we sleeping last night so he was in luck and he ate the entire bag. Then our breakfast came and he ate almost all of the eggs and two pieces of sausage. He has been in a good mood this morning, smiling, and laughing with daddy. He has asked to go to the playroom already this morning and his personality is back. With the infection that means that we'll be here another 7-14 days at least. We'll have more of an idea when the infectious disease Dr. comes by. Well that's the latest and greatest.