No answers yet

I haven't posted about Colin in a few weeks. I thought I was doing it because I was waiting for more answers. Tonight I realized I haven't done it because I don't like what I'm hearing.

We had the sleep study: It showed mild sleep apnea both central and obstructive. What that means is his brain forgets to tell him to breathe at night at times. AND also at other times he tries to breathe but can't because something is blocking his airway. At this time they want us to just watch it.

We had a CT scan: That showed classifications and sever chronic infection in his sinuses. That resulted in a 30 day prescription of antibiotics. His chest CT scan showed Mosaic air ways in lower lungs and scaring in upper lungs. The Mosaic means that his bottom lungs aren't getting the air they should be. They aren't sure if they are fully destroyed or just damaged. The scaring at the top is from the constant pneumonia.  At this time the pulmonary doctor isn't sure where to go with this info.

We had a hearing test: It showed normal hearing except for the two highest sounds on right ear. This isn't a huge concern and they felt if he didn't have as much fluid build up in his head he would be okay. Right now just watch and maybe retest in 6 months to a year.

We had an appointment with the ENT: She said start nose spray twice a day to try to help the sinuses. She really didn't want to do surgery. She is hoping he will grow out of everything. (Right now I'm not really happy with our ENT at all and haven't been for about a year. I'm hoping at our next pulm appointment we can find a new ENT that fits the needs of Colin and our team better)

We had a speech eval: She was concerned about how he breathes when trying to eat. She doesn't feel he is aspirating on food. (She watched him eat). But she feel she can't help him at this time. She noted that he can't ever close his mouth and breathe. So to try to do oral exercises to strengthen muscles we would in a way asking him to suffocate himself since he can't breathe unless his mouth is open. So until something is done about his sinuses she can't help him. She feels there are issues but right now can't address them until other things like sinuses and pulmonary function is controlled.

We go back to see the pulmonary doctor in March. I'm hoping she has talked to a few other doctors and has a plan. She has talked about a lung biopsy, and also some other testing. I don't think March appointment will give us any answers but since we haven't come up with any other maybe we can try a few more roads.

For every step forward it feels like 2 backwards.

So that is the update on Colin. He still needs prayers. He needs prayers that the doctors on his team can find a cause or find the correct tests to run on him to get the answers. After 3 years of praying for this I feel defeated and at times really down. I do thank God that he is a trooper through it all. I will continue to fight and do what I feel is best for him until either we find an answer or he is old enough to tell me what he wants on his own.