Friday, May 14, 2010

The 15 minute pitty party...

I like to try and keep them to a 15 minute doesn't usually work. But Wednesday it did. Wednesday morning was pretty typical for us...Gracie off to school, Zach working, Jake & I to the doctor. Haven't heard that in a long time have ya?! No worries, this was a planned appointment. I FINALLY took him in for his 6 month (2 months late) cardiac follow up. The nurse couldn't believe how much he had grown in the past 8 months. She had to keep checking the chart every time she would jot down one of his numbers. He gained almost 5 lbs in 8 months! WOW! Anyway, they did a echo & the doctor came in the room. We love our cardiologist. He asked if we were planning on seeing the ENT (Ears Nose & Throat) doctor anytime soon. I thought to myself that it was weird that he would ask that but told him that yes, we were taking him back up to Seattle at the end of the month to meet a new ENT (the old one made this momma mad with his lack of bedside manner), and to talk about possibly taking out Jake's tonsils and adenoids. It's common for children with Down Syndrome to have large tonsils and adenoids, which in Jake's case, is believed to be part of the airway obstruction issue. Easy enough fix...TAKE'EM OUT! The kid took open heart surgery like a champ, what's a little outpatient surgery?! Back to why the cardiologist was asking about the ENT, the doctor was watching Jake's echo (isn't technology great) in another room while it was being done & saw that Jake still has some higher than normal lung pressures on his right side. They are not dangerous 37-40 when they should be 20-25, but still high. His concern is that we stopped using oxygen at night about 4-5 months ago, & feels that he should be on it still. We stopped because we couldn't see any reason that he needed to be on it. Anytime we had him monitored at the hospital, his oxygen levels were always great, to the point that the doctors at the hospital didn't even use it. We talked with our pediatrician and came to the decision that oxygen was no longer necessary. Our cardiologist feels otherwise. So, in 2 weeks we take Jake up to meet the new ENT, and we are 99% sure that he will be having another surgery with in the next 6 months, and he will be back on oxygen. This is where my 15 minute pitty party came it. Life was so NORMAL for such a long time (yes, 6 months feels like FOREVER after the last 2 years we had)..I don't want to go back to having to deal with that stuff again. Grrr. Then I took a few deep breaths and had to remind myself that oxygen at night isn't that big of a deal. We can handle it. It sucks, but we can do it...we've dealt with much worse. So, we have two weeks of freedom from tubes, tape and extra air in the house. Feel my excitement?! LOL.

I've been wanting to post this, but didn't want to move down my post about Zach being named Fire Fighter of the year! I'm so proud of him! Other than that, I have been plugging away on Gracie's birthday party goodies! I'm having so much fun, I can hardly stand it!! ;) I took a few pics to make Gracie's b day are a few! Happy spring/summer (depending on where you are)!


Andrea said...

I'm feeling for you....that sucks (I can't think of a better word?!) Pitty parties are OK, I have them too :) The pictures are beautiful.