Birthday Week

In the true spirit of all things Bobby, we have had a very exciting birthday week.

Last Tuesday the Bubs had a pretty rough day - lots of reflux and gagging. We were afraid his feeding tube had become dislodged so we took him to the ER. 7 hours later we were home, having found out that a) nothing was up with the feeding tube and b) Bobby had a previously undiagnosed heart murmur.

Wednesday he went for his regularly scheduled surgical follow up. They did an echo and found nothing nothing wrong with his heart - just some 'trivial valve regurge', meaning his tricuspid valve is leaking a little bit, but its in the range of normal. The murmur? The APN thinks that its been there a while but his breathing is so much lighter the murmur is now apparent.

Friday we said bye-bye to the oxygen cannula. So nice to be tied to one less thing!

Saturday was the big day! We went to Bubbles Academy, a music school where he took classes pre-surgery. We did a walk in class to celebrate his birthday. He had a fabulous time. He rode in their toy car. We danced. We played with rubber ducks and scarves. His mamas argued over who was getting to do more activities with him. And then we played with bubbles.

After lunch and a nap, I put together his present - a jumperoo. We've avoided getting him one because his physical therapist doesn't like them (she wants him working hard all the time, something we don't believe a year old guy needs to do). He liked it much better than I thought he might - I had expected an adjustment period. He particularly is happy as long as mama was bouncing his seat.

It was a lovely day. We'll have part 2 of his birthday in a couple of weeks when Grandma comes to visit us. I just couldn't get my act together for his mini party in time for the weekend.

Sunday was a rougher day. His chest hurts him when he coughs or sneezes - not surprising for a boy who had his sternum torn apart 7 weeks ago. But over the weekend, every cough became a 20 minute crying jag that led to reflux and his oxygen saturations coming down. His voice was raspy with congestion. We didn't know what to do.

Monday we decided we had to do something. So, we pulled out his tube and Nanny Beth took him to the ER to a) get a smaller tube that would obstruct his throat less b) get deep suctioned, where they put a tube in his nose/throat and suction out all of the mucous. Apparently, he had enough mucous that the nurse actually called someone to witness how much stuff was coming out of his system.

One or both of those things seemed to do the trick. He is much happier. Now, coughs and sneezes cause winces, not meltdowns. His breathing is much clearer. We had a condo meeting at our place last night and he was bubbly. He got fussy at the end, but I was beginning to feel fussy myself, so who can blame him.

This week is his first week of a full therapy schedule - speech 2x, ot 1x, pt 1x. He's getting a swallow study done next Monday to make sure that it is safe for him to eat (make sure he's not aspirating). He still has to have a sedated hearing test this month and his g-tube put in next month. But then I'm hopeful we'll get a break from so many doctor's appointments and spend the summer having fun.