Cardiology Visit

Carter had his 4 month check up with the cardiologist on Monday. Everything looks good, his scar is looking nice, his chest x-ray looked good and everything is going well. We were really hoping that we would get the word to take him off oxygen at night.......no such luck. I specifically asked about this because I would bet 3/4 of the night he doesn't have oxygen in his nose - but rather in his eyeballs - which is not the least bit effective. He still wears his pulse ox machine at night and maybe once or twice a night he sets his alarm off and we have to go in and put the oxygen back in his nose. So really what is the point of having oxygen if it isn't going in your nostrils??? My question exactly.

The cardiologist would like to have Carter do a sleep study. We would take him to PCMC at night, check him in, hook him up to monitors, and he sleeps all night and then we come home. The purpose of this is to check for sleep apnea - which he may have because he already snores. Because kids with Down Syndrome tend to have floppy muscles - they also have floppy tonsils and adenoids. The concern is that when he is asleep, his tonsils and adenoids flop back in his throat and constrict his airway even more - which could be causing sleep apnea. If he does have sleep apnea it may be time for his tonsils and adenoids to be removed to make more room in his airway. So for now, we will keep feeding the oxygen into his eyeballs at night. We go back to the cardiologist in 6 months - after that check up he said we will only be seen yearly. Wow - we have come a long way.

And since we last posted - I know it has been a while - Carter got a nasty virus. It lasted several days and his temperature got to 104.8 while on Motrin. It was not pretty - and it happened while we were waiting for insurance approval for the last synagis shot. (Go figure - insurance approved him for 6 months but only 5 shots - you do the math - it means we didn't get our last dose when we were supposed to). We took him to the doctor and he said it could be RSV but the only way to know for sure was to take him to the hospital to do a viral panel - and both the doctor and I agreed that we would rather leave him out of the hospital if at all possible. So we really don't know exactly what he had - but we know we don't want to have it again.

The next week he woke up one morning and had a very strange rash on his bottom. So another trip into the doctor (because we don't see him enough) and he said that Carter had contracted folliculitis. We got some antibiotics and some cream and he is now looking much better. Poor guy - not a fun few weeks.

We also met the cutest little boy named Jaxson. His story is amazing, he is super, super cute - and he has a brother named Carter - how cool is that? Carter really liked him and just kept smiling at him. His Mom does the neatest thing for people and makes blankies for people with life threatening illnesses. She personalizes each one based on what that particular child likes. I am helping to spread the word - so go check out this blog and read about these cute kids who are receiving these amazing blankets. And if you know of anyone fighting a life threatening illness and who would appreciate a really cool blanket tell them to stop by the blog and fill out a request for a free blanket. Or if you don't know anyone in that category, you could make a donation to help her pay for these blankets that she makes and donates.



And finally, we will leave you with some smiles. We finally got a little of Carter's seal bark on video. It is really funny to watch in person because he tries so hard to make the sound and then he laughs when he finally gets it - we hope it makes you smile!!