My last real post was so long ago there is a lot to catch up on. Nick had an appointment with his GI doctor in early June and he wanted an ultrasound of his gallbadder to check on the stone. The ultrasound showed that the duct connecting the gallbladder to the intestines is dilated now. That probably indicated that he is passing small stones and they are getting stuck. If the duct gets fully blocked the gallbladder could rupture. So he referred us to the surgeons. The surgeon looked at the ultrasound and said he wants to talk to the GI doctor about it before he decides if he wants to operate now or wait. We haven't heard back from them yet. The surgeon also said he will remove his port either with the gallbladder or by itself if the doctors decide to continue to wait and watch the gallstones. His port hasn't been giving blood return for months so it is really useless right now.
He had a mapping appointment at MUSC for his cochlear implant. The levels are the same as they were before. That is normal. The level is increased a lot in the beginning but then usually stays the same. He didn't cooperate in the sound booth so we couldn't get a good indication of what he really hears. The audiologist can connect to the implant and test what his brain is responding to so that is how they have been doing his maps. He goes back in six months.
He was fitted for AFO's and now has braces for his ankles/feet to help him bear weight. He also got a hand brace to keep his thumb open on his bad hand, an arm brace to keep his bad arm straight, and a Spio. The Spio is similar to his Theratogs but a lot easier to put on.
He spent a few days in the hospital in the beginning of July. His appetite had been decreasing for about a week and then on the 4th he didn't want to eat anything all day. He woke up that night with the shunt malfunction screaming. We took him to the ER the next day. The CT and xrays all came back fine. We waited about eight hours for the neurosurgeon to see him. He said that the fourth ventricle shunt looked like it was too short now. He said he was going to reprogram the shunts to drain faster and maybe do surgery the next day. They admitted him and reprogrammed the shunt that night. They had him scheduled for surgery the next day but he seemed to feel better. The neurosurgery department did rounds in the early afternoon and said he was bumped from surgery because of traumas. He was finally able to eat after that. Then that night they made him NPO for surgery the next day again. I didn't sign the permission slip because I wanted to talk to his actual doctor beforehand because he was acting normal again. The doctor agreed he shouldn't go through with surgery at that time because Nick has improved. That was at 7am. They didn't discharge him until 7pm when neurosurgery did rounds. We were so aggravated. I called the office twice before we went to the ER to see if we could make an office appointment. They said no and that we had to go to the ER. He spent three days in the hospital for a shunt reprogram which takes two minutes and can be done in the office. So annoying!
We had his transition meeting with the school district last week. The preschool special services director, a special ed teacher, a speech therapist, and an audiologist were all at the meeting. They have a different preschool program at each school tailored to the different needs of the kids. We will go back closer to his birthday and he will be evaluated and placed in the program that best fits his needs. It seems like it is going to be really good for him.