Monday, June 16th, 2014
John had an appointment with his GI doctor. He weighed 9 lbs 9oz. The doctor is pleased with his weight gain and that he’s tolerating feeds by mouth as well as via the g-button. The doctor said he wishes for himself and John’s pediatrician be the ones to change his feeds. Just so there aren’t too many hands in the pot. Also, we have increased John’s reflux meds (Prevacid) from 1ml to 1.3mls. We’ll have a follow-up appointment in about a month.
Wednesday, June 18th, 2014
Thomas & I drove to Temple and we were able to knock out three appointments in one day.
John weighed 9lbs 14.4oz, with diaper and clothing.
The doctor changed his steroid drops from 1 drop a day to 1 drop twice a day. The doctor doesn’t see a reason to repeat his larynx surgery.
His doctor did notice that his palate is soft. The tissues and muscles that are in the roof of his mouth meet has more of a line instead of being intertwined. That could be something, or nothing at all to worry about.
John’s breathing is not horrible, but could be better. The doctor agrees that he was using his chest muscles a little more than when he left the hospital. He thinks we may need to consider a CPAP (the nasal kind) since we have noticed him skipping breaths, but that depends on how the sleep study goes. Also we’re still not ruling out the possibility of a tracheotomy. At the same time his doctor doesn’t think we’ll need it. Basically the sleep study will tell us how much assistance he’ll need.
We’re also going to Children’s Medical Center in Dallas for his sleep study because Texas Children’s in Houston has an extremely long waiting list. We’re scheduled to follow up in a month. We’re hoping John’s sleep study results will be available by then.
Once a month we’ll need to check the water in his g-button balloon. This is what holds his g-button in place. It should be at 3mls. If it isn’t we’ll need to add more water. We were also shown how to put the tube back in if it falls out.
There is some redness around the tube. According to the doctor, it’s called “granulation tissue”. His doctor applied “silver” to help with the healing. Fortunately, it’s also something his pediatrician can apply if needed.
He’ll be given a new button about every 4-6 months as he grows. We just hope insurance agrees.
His tests from the hospital came back normal. His genetics doctor strongly believes he may have Catel-Manzke syndrome. The suggestion came randomly from our lactation consultant who at one time studied genetics. It’s a very rare syndrome. It’s rare enough where only 26 (now possibly 27) people have been diagnosed with the syndrome.Here are a few links:
All of his features seem to point to Catel-Manzke. The only problem is there really isn’t a test for it yet. She has forwarded John’s results to Texas Children’s in Houston and has yet to hear anything back. She did ask if we’d be ok if they were to contact us for further testing, more so to help learn about the condition. We agreed. Fortunately the syndrome has not been known to affect mental capacity.
The “beaking” in the vertebrae simply means the vertebrae’s are curved slightly vs. being in more of the square shape they typically appear as. She would like for us to follow up in a year with another full skeletal x-ray to compare to the one he had in the hospital.
There is still a possibility he may have cerebral palsy on top of the syndrome, but it’s still too soon to tell. We’ll know more as he ages.
Thursday, June 19th, 2014
Home Health called to let us know we had been approved for 65hrs/wk. Now the search is on for a nurse. Basically it is a waiting game until we find one. We do have the option of suggesting a nurse if we find someone with the qualifications.
Finally, we visited family this past weekend, June 13th- 15th, and this is what you get when you try to take 2- 2 yr olds, a 10 yr old, a 3 month old, and a 3 yr old’s picture together.
That’s about it.
Email me if you have any questions.