October 29, 2011

Day 17 & 18

Yesterday, Samuel remained in the 2 to1 heart block for most of the day. He had like a 30 minute period when he went into sinus during the afternoon, but it didn't last, nor did it change the decision the doctors have finally come to: Samuel needs a pacemaker.

After waiting it out for over 2 weeks, they've come to the conclusion that his heart isn't going to resolve this issue quickly, if ever. So, bright and early Monday, Samuel will go back into the operating room for the 2nd time this month for the pacemaker surgery. It may end up being a back up pacemaker or one that he doesn't need permanently, but it's hard to say anything definitively at this point. We know his heart is capable of a good sinus rhythm, but for whatever reason, it's just not reliable enough to get us out of the hospital in a predictable amount of time.

It was hard for me to hear that he's back on the surgery schedule. In so many ways, it feels like a giant step back. He was recovering well from his first surgery. His scar is almost totally healed and looks so good. I hate that they have to go open it back up. He was even able to begin physical therapy yesterday, which made me feel like we were finally getting back on track with things. (BTW, the physical therapist said that the low tone that all babies with DS have isn't very severe in his arms and legs, which was encouraging to hear. We will, of course, have to work on his trunk and head. But it was nice to get some good news for our future.) I don't feel like he is so fragile anymore. So, the idea of seeing him intubated and out of his crib again just makes my heart hurt.

I have to keep reminding myself that he is not going back for the same surgery. This is a different one. It's not nearly invasive. They won't have to crack his sternum again. He won't have to be on bypass. It will only take 2 hours, not 5. He will have to be intubated again, and they will reopen his incision site, plus make another small one at the top of his abdomen. But he won't be intubated for days, and he should only be in the ICU for 24hrs or so afterwards. It won't be as bad. I just have to keep saying that. It won't be as bad.

Other than getting the news about the pacemaker, yesterday and today have just been normal days. Well, our ICU "normal." He has been having trouble with his tummy hurting and being gassy. I think it's because he is getting so much more formula than he did at home. He just seems really uncomfortable a lot of the time and wants to be held and patted for hours. We tried switching the formula yesterday, so we'll see if that helps. It will be nice to get back home and get back to working on nursing again. Then maybe I can catch up with him and he won't need the formula as much. They also turned his pacemaker back on to see if that would help with his irritability, but it hasn't seemed to make much difference. For once, the problem is just a typical baby problem and not cardiac related.

We will be hanging out in the CV ICU until Monday morning. Then maybe...we'll get to come home soon. I'm sad my boys won't get to trick or treat together in their cute costumes. We'll just have to stage a picture once we get home. It can be our new tradition: Wearing Halloween costumes to eat Thanksgiving dinner. But now that we are getting this pacemaker, I hope it means they will have plenty of years to make up for it.


  1. I am so sorry to hear that he has to go back into surgery! Our thoughts are with you and continue to be throughout this ordeal! Good luck with everything and get some rest!

  2. Oh Tori, Your writing places me in Sam's room with you and I long for him to be home, too. Praying for a stellar surgery and pacemaking initiation tomorrow and extraordinary recovery and a calm tummy. We love you, Amy