After the terrible night of NO rest....today he rests. I think, knock on wood, that we have finally found the mix of medicine to keep Tucker comfortable. At rounds they looked at all the amounts given throughout the night to capture Tucker and they came up with a plan. It has worked so far today, almost too good. (meaning maybe too much once again, we will have to wean back but slowly..) Today they will let him rest, since we were up all night..but tomorrow we wake up, move around, and wean the settings on the mask. We had another 10-15 minute time frame off today. His oxygen levels stayed pretty good, needed blow by oxygen is all...which is a good sign. We might even get longer periods of time off the mask tomorrow. We will see.
I got to hold him twice today. We did it while he was pretty sleepy and not awake and agitated. We swaddled him up and he laid in my arms for about an hour the first time. Then he got a little restless and I put him back in his bed. The second time he had a huge blow out diaper, front-back-sides---everywhere so he wasn't there long. (he needed to poop so I am not complaining at all) It was a step towards where we want to be. Awkward with the mask, tubes, iv's and swaddled...but very NICE!!
I am working on our scrapbook, ( our heart journey) maybe I mentioned that already. It is good therapy for me, hard without all my supplies, but it is coming along. I am slowly taking things off the walls here putting them inside for Tucker to see as the years of our summer in Boston pass by. So many people, so many of you....Loving Tucker so much!!!! This book will remind him of everyone he has touched and how his heart got fixed.
Snow Much Fun
4 weeks ago