Friday, October 16


We got back late last night from the Pulmonary appt at Children's. The best part of our visit there was that we knew no one inpatient! Usually when we are there for clinic appts a friend has been admitted and we stop by and visit. But what a great situation to have no one there we knew!

While we waited we met an 11 year old boy from eastern washington that has the same skin, eye, hair color as Tommy. They could have been brothers! His mom and I had a good conversation about large age gaps in kids, mine is 12 years between teens and toddlers but that supermom had 17 years and she was loving every moment with her cute 11 year old.

Pulmonary spent about an hour taking Tommy's 'complex' medical history and current issues into consideration.

First, we talked about sleep. He tosses and turns during the night and at nap, abnormally ALOT. But lately he has added awakenings which are terrifying screaming, gasping and he is sweaty by the time I get to the nursery. They recommended a sleep study. It may be that his airway is collapsing at night, which would explain his movement also in that he is trying to get a better position to breath. If this is the diagnosis after the sleep study, he might end up with a nasal canulla of oxygen to help keep things flowing. Apparently Ds gives you a little bit floppier airway which combined with relaxing sleep isn't a good combo for Tommy. We are scheduling the sleep study with their Bellevue clinic.

Next we talked about Polysaccaride Antibody Deficiency Syndrome and their view is pretty serious with keeping pulmicort twice a day nebulizer permanently. Every day of the year now. Which will keep his lung airways a tad bit more open so if 'stuff' gets down there it has more wiggle room to get back out. Technical terms. With pulmicort we need to be sure to wash his face and inside of his mouth after each breathing treatment as it causes sores..... spa treatment for Tommy! And they agreed antibiotics for eight months straight might be the best solution to keep him health.

I totally forgot to talk to them about cardiology's interest in cathaterization to check lung pressures. But I'm really wanting to postpone that diagnosis until another 'event' of pneumonia happens. Cathaterizaiton has risks and right now it isn't terribly important to us.

I must say, I'm sick and tired of Whale parking 6th floor. For the last two and a half years I have been parking there for various appointments and it just hit me yesterday, I need a break from that place! Tommy and I enjoyed a crispy creme doughnut treat on the drive home and it helped my mood:) Our first ever appt with the lung folks was great.

Tommy Adventures