Monday, March 30, 2015

Miles Surgery...Round 2.

Miles is currently in surgery. Two minor procedures, and also very common, but risky considering his cardiac history. He's having surgery to explore and find a missing testis and bring it down. (Common among all boys, not just kids with DS.) Also, he's had some residual, random fluid in his ears the last few months.  Although his hearing tests have been decent, and he hasn't had any ear infections, his ENT thought it was best to get a good look in his ears, clean them out, and decide in the OR if he should get a set of tubes.  Since he was going to be put out anyway, it was best to coordinate both surgeons and get two birds with one stone.

Although it's common for kids with DS to get tubes (smaller ear canals, more ear infections, excess fluid, etc.), I didn't want him to get them just because of his Trisomy diagnosis.  BUT, since his fluid has been lingering for a few months, I wasn't going to mess around with a simple, non-invasive procedure like tube insertion.  (Nolan has had two sets due to multiple infections!) We didn't want any fluid to impact his hearing, ever.  His ENT said that his canals are VERY SMALL, because of his age and his diagnosis. So, with that, he's getting a set of titanium tubes, the smallest they have. These don't stay in as long, 6-9 months, but that's fine. If/when he needs them again, he'll just get the simple gas to sleep for 10 minutes and have them put back in.

Even though it feels like yesterday we were here and having open heart surgery, it was harder to say goodbye to him today at the "kissing corner."  Our love for him has grown exponentially, and he's less of a baby now and more of a our little guy.  He's aware of what's around him, playful, mobile, and has a personality.  When we see him next, he'll be groggy, maybe sad and uncomfortable, and "more work." More work as in, consoling, entertaining, etc.  Last time he was put under, he was sedated for a day or two and we had to sit back and wait and watch.  More work as in...more work for us emotionally I think.

Today we knew exactly where to park, where to get a badge, what floor to go to (ha..although I went to the third floor, cardiac ICU out of habit, instead of third floor surgical!).  The waiting room is the same..doctors in and out, talking to parents, parents and families waiting, some crying, most anxious.  Ryan's taking  a nap (ha, I know...people wonder how he can do that when his kid is in surgery, but I guess he's so confident and faithful, that a nap will do! And he's exhausted.)

Right now we wait, and pray, and drink coffee. :)  We pray that he doesn't require any intervention for pulmonary hypertension, and he is able to come out of sedation and the breathing machine okay.  This is the prayer for all parents here, but with his history, it's extremely risky. Risky enough that his Superhero cardiologist wanted a cardiac anesthesiologist to serve him.  We're sure things will go fine, because that's exactly what's supposed to happen.  He wore his Superman shirt and socks today, of course.
Regardless of not eating any solids this morning, and having his last bottle at 7:30 AM, this kid is a trooper. They didn't even give him any "pre surgery relaxing drugs" to get him chilled out.  

Waiting with Mommy before pre-op.  Ryan came about 11:30 from work.

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