Sorry I haven't updated sooner, but Timmy decided to pull an all nighter Thursday. I guess with the 7 hours 12 minutes of sleep Wednesday night topped off by the anesthesia from surgery Thursday, he felt well rested. So Friday I was more or less a walking zombie.
The Bad News....On Wednesday evening Timmy's left eye comformer came out, yet again. We had been anticipating this would happen. Over the past week or so, Timmy's left eye lid had gradually been opening. It was in longer than Dr. Richard had anticipated that it would stay in. The comformer stayed in for a month. So hopefully Timmy's eye socket has made some progress in growth within the month. The comformer will not be replaced until Timmy goes into surgery to change out the comformer in his right eye. This will occur sometime in February.
The Good News....The sleep study Wednesday night went very well. Of course, the tech could not give us any information as to how well Timmy did. But the tech did say that Timmy slept for 7 hours 12 minutes and went into REM sleep 4 times. And that Timmy woke up twice and was able to get right back to sleep. We were told that it could take up to a couple of weeks for the Neuro sleep Doctor to receive, read and complete the report on the sleep study.
Our second bit of good news is in regards to Timmy's ABR. The hearing test still shows profound deafness in Timmy's right ear. BUT the hearing test shows NORMAL hearing in Timmy's left ear!!! Timmy was able to hear sounds from all of the freguencies. So sorry Timmy! We have to take your newly found cause and effect and teether toy away. You don't need your hearing aid anymore at this time! WooHoo!!!
Now for the Hopeful News....Before Timmy can have his trach removed, he has to go through a couple of surgeries. The first surgery will include enlarging the left (?) nasal passage and removing the tonsils. Or maybe it is the right nasal passage, which is narrow and needs to be reopened? Oh well, I can't remember. Anyway one nasal passage is open and the other is narrow and needs to be opened more. Also during the first surgery someone from the GI team will be doing a Ph probe study. Timmy's esophagus and laranyx showed signs of swelling. So this could possibly mean that Timmy is having reflux. If he is having reflux most likely the nissen fundoplacation surgery that Timmy had allmost 2 years ago is failing. We have suspected something was wrong because Timmy has been able to burp by mouth, he drools a lot and he wants to keep his fingers/hands crammed far back into his mouth. So we will address this issue more indepth as test results become available. For now, I have a call into Timmy's pediatrician to see if she will prescribe some Nexium to go along with his daily dose of Prevacid. The second surgery will include lasering the airway above the trach, to remove scar tissue. This scar tissue most likely formed during the 3 months following Timmy's birth that he spent on a ventilator. Hopefully this will work. If not, Timmy will need a third surgery. In which case, some cartledge will be removed from his ribs to build and expand the airway. Also in the second surgery, Timmy's adnoids will be removed. If all goes well, within a week or two following the second surgery, we can try to remove Timmy's trach. There will be a team meeting on Dec. 8th. A team meeting is where doctors from each speciality get together to discuss their patient cases and plans of care. At this time Dr. Zdanski will present Timmy's case and his plans. And consult with a member of the GI team to see how to proceed with Timmy's reflux. We will follow up with Dr. Z. to see what has been decided.
- Timothy Ethan
- I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....
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