Thursday, October 29, 2009

Another surgery

Nicholas is having another shunt surgery tomorrow. His fourth ventricle is enlarged and causing the bulging soft spot. His current shunt is working and his lateral ventricles look good. This means he needs to have a second shunt placed in the fourth ventricle. So he will have 2 shunts on the right side of his head. Surgery is scheduled for 1pm tomorrow.

Wednesday, October 28, 2009

Good news and bad news

First the good news. I got the official results on the CT scan for Nicholas' cochlear implant. He has the parts and can get the implant! Our next visit with the surgeon and audiologist is Nov. 12.

Now the bad news. Nicholas is currently in the hospital. His soft spot has been bulging so we brought him to the ER on Sunday. The CT and x-rays showed the shunt and his ventricles looked good. The bulge has gone down and come back and gone back down and back up so I brought him back to the ER yesterday. They repeated the CT and it showed a slight dilation compared to Sunday's CT. We have seen a nurse practitioner and physician's assistant from neurosurgery and they think his shunt is starting to malfunction. His neurosurgeon is currently in surgery so we have to wait until he looks at the scan and decides what to do.

Saturday, October 24, 2009

He Rolled Over!












It was kind of a busy week for Nicholas. On Monday he had early intervention. His EI was very impressed with him. He was wide awake and showed off his tracking and grabbing skills. He even imitated her by sticking his tongue out after she did. Tuesday was his normal physical therapy. He did well and as always, is improving every week. After working his muscles in PT he rolled over later that day! He hasn't done it again but that is a huge milestone. Wednesday he had an occupational therapy evaluation. He did well and she is coming back next week with her evaluation results and to determine how often she is going to see him. Today Nicholas and I got our flu shots. He did well, probably better than Mommy. I was planning on getting the mist because I hate needles. The nurse said that since the mist is a live virus I could easily pass it on so the shot would be safer to get. So I sucked it up and got the shot.

Still no official yes or no about the CT for the cochlear implant. I called on Thursday and they received the disc and the Dr. was reviewing it. I never heard back so I called on Friday and the Dr. and his nurse we not there. The nurse that I talked to looked at his chart and Dr. L wrote that he needs to complete the cochlear implant evaluation with audiology and speech. We are taking that as his ears are good because why would he say he needs to see audiology to complete the eval process if he doesn't have the right ear parts. The nurse is supposed to call me on Monday.

Sunday, October 18, 2009

Pumpkin Patch













It was kind of a slow week for us. I picked up the CT scan from Palmetto Health and shipped it to MUSC. The radiology report said that his ears are normal but didn't say anything about the nerve. That is still encouraging but we have to wait for the surgeon to tell us the official results.

An occupational therapist is coming to do an evaluation on Wednesday. He has PT on Tuesday and Early Intervention on Monday.

Tuesday, October 13, 2009

Cochlear Implant CT







Nicholas had the CT to look for the cochlear nerve yesterday. He needs to have this nerve in order to get the implant. His surgeon said he has never seen anyone without it so we have our fingers crossed. Everything went well and Mark was very pleased with the children's hospital this time. I'll call MUSC in a few days to see if they have the results. We go back down there to meet with the surgeon and audiologist Nov. 12.

He had PT today and did well for half of it. Then he had enough and let everyone know. Nothing new with PT, just continue to work on what we are doing.

The pulmonologist had to reschedule his first Synagis shot. Insurance approved 5 shots starting in Nov. so his appointment is now Nov. 6 instead of this Friday. Synagis is for RSV which is a respiratory virus. It is very dangerous for preemies if they get it because their lungs were so underdeveloped and their chronic lung disease. Synagis doesn't prevent RSV but it lessens the severity of it.

Nicholas is doing really well with his baby food. He sits up well in his high chair and has been eating a whole container 2-3 times a day.

Wednesday, October 7, 2009

Week turned out slow




Nicholas lucked out with two things this week. His physical therapist has an infection so she had to cancel. She has to get permission from her doctor before she can treat patients again so we aren't sure if she will be here next week or not.

The CT for the cochlear implant was scheduled for tomorrow but was changed to Monday. A nurse called for his history and after giving her his history and talking to a doctor, the doctor felt it would be best to fully sedate him with anesthesia. He will have to be put on a ventilator too. With his history of chronic lung disease and sleep apnea full sedation is safer.

He has been laughing a lot lately. We tickle him on his neck and stomach and he loves it. He also thinks he is a big boy and doesn't want to take naps anymore. This has caused him to be one crabby boy a lot and has messed up his sleep schedule. He fights sleep all day and finally falls asleep between 5-7 so he is up late.
11 months old tomorrow!


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