We are taking a step back and re-evaluating

Today was Carter's appointment with Dr. Muntz, the Ear, Nose Throat doctor. This was the appointment we were waiting for - one where we would get answers to the many questions we have regarding the severe obstructive sleep apnea. The appointment went well and we are much more informed and have decided upon a course of action for Carter. A course that feels comfortable for us as parents and for the doctor.

Carter has what Dr. Muntz calls multiple level airway obstructions. He went through Carter's anatomy and why we are dealing with this. Because Carter has a flat skull in the back of his head (typical in children with down syndrome) his palate is actually pushed forward because there is not as much room for everything. Children with down syndrome also typically have very large tongues - this is also an issue. Also because of the flat skull, it means there is less room in his airway and we already know that his airway is very tiny underneath his voice box. All this things add up to cause the multiple level airway obstructions.

After much discussion and questions about removing part of his ear cartilage and making his airway bigger below his voice box we decided the best bet would be to do a Cine MRI. This is a special MRI that Dr. Muntz said he had to beg Primary's to do for a year because it is so scary. Not scary as in scary MRI's - but scary in the fact that you sedate a child who stops breathing regularly and make them mimic being asleep and do not provide any sort of oxygen, breathing tube or any other breathing assists. (Carter's sedated echo which was scheduled for the 12th was canceled because of the sleep study results - from here on out Carter cannot be sedated for anything. If he needs a procedure done - he must go under general anesthesia - which is why a sedated MRI is scary. There will be multiple people on hand to offer assistance should anything go wrong.) Then for one minute and thirty four seconds they watch and see if they can see what happens when Carter is asleep - they record this so they can view all the aspects. The MRI should show his brain, his airway anatomy and then what happens when he goes to sleep. They will watch to see if it is his tongue that is the issue, the airway below the voice box or the palate. Based on the findings they will then know the best surgery for Carter. Of course the down side is if they can't see anything in this MRI we will be back to making a decision just based on what we THINK it could be. We have scheduled this test for the 5th of February.

After the MRI, we are to have an appointment with the sleep medicine doctors. They will view his sleep study and offer us any information they feel would help us make a decision on which surgery to pursue at this time. They may suggest that CPAP is the best way to go - but we already have a really hard time keeping oxygen in so we know that CPAP will be way worse. Dr. Muntz just wants to find the surgery that will make the most difference for Carter. We know that from here on out any surgery to correct this is going to be a major surgery.

One of the questions we asked is whether we can wait and see if as he gets bigger his airway improves. While the doctor said he guesses we could wait, he said the real question is whether Carter's heart and lungs can wait until he gets bigger. Scary thought. So I guess we now move forward and do whatever it takes to get this better. We are happy the day is over, that we now have more information and a plan. We'll keep updating as we get the results from all these things!

On a really cute note, we got to the ENT waiting room and I sat across from a boy who also had down syndrome. His mom looked up at Carter and mentioned how cute he was and asked what his name was. Then she leaned over to her boy (who turns 14 on March 29) and said, "Look at that cute little boy over there - his name is Carter. And guess what? I think he has down syndrome just like you." I said, "He does." Immediately the boy gets up and walks over to me and pulls up his shirt to his neck to show me his battle wound heart scars. I said, "You know what? Carter has that same scar." So of course he wanted to see Carter's scar. After a brief comparing of scars he got called back to the office - but it was so cute. I just love meeting all these kids and hearing their stories.

Well it has been a long day and it is late - good night everyone!