Yesterday was the big UCLA appointment with all of the specialists. The specialists come in one after another to examine, and then give a report, and then they all meet together and come up with a game plan.
Caiden weighed 18 lbs. 4.5 oz and is 2 ft. 3/4 " tall. He gained back most of what he lost a few weeks ago. His weight is the focus of concern. I'll come back to that.
He saw a dentist, an orthodontist (Really??? he has 4 teeth!) A pediatrician, speech therapist, plastics, and an audiologist. Plastics was happy with the way his skull has healed after his skull surgery, and checked inside his mouth and says his palate is intact, as we expected. The dentist checked his arch inside his mouth and said that looks good.
Caiden's lack of eating is the biggest concern and it all hinges on what the swallow study reveals. We questioned the 90 x-rays in an hour that the gastric emptying study did. We have not yet gotten the results for that. Though the swallow study will require more x-rays, they deem it necessary to find out how his internal swallowing is working. The Dr. said if he has an internal anatomy problem then his not eating is his natural, subconscious way of protecting himself for further problems by eating. So now we wait for the swallow study next month.
The doctor cleared him for surgery for this Tuesday to stretch his airways in preparation of taking his trach out sometime in the future. That is why the swallow study has been pushed back to next month.
There are some nursing issues that need to be addresses and worked out as he is too fragile to be exposed to habits of the nurses.
* Please pray for a successful stretching of the airways on Tuesday, and his protection during and after the surgery. In recovery he is taken care of by nurses that don't always know how to take care of a trach patient. Also that he gets enough oxygen during the surgery this time so as not to collapse his lungs again.
* Pray also for his nursing staff to be the best that they can be, and safe for him
* Pray for his safety during his swallow study.
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