Sorry once again that I didn't post last night. I actually got out of our little room for a while and went to buy some clothes for Mason. See, he still doesn't quite know what's going on when he awakens, so he starts grabbing at everything. If we can put him in clothes, we can hide some of the wires and have a better chance at helping to free the remaining ones.
Yesterday was again a good day. Despite a ton of changes for Mason, he was a champ and kept on fighting. I talked to the doctor about if/when they might reconsider his prognosis now that he's showing a few good days in a row. To her credit, she remained a realist: Anything can happen at anytime and Mason is still very, very sick. She still does not believe he will survive this admission, but if he were to show weeks/months of improvement then plateau, then maybe he might have a chance.
So, for the changes: we were again able to wean down the Nitric Oxide twice yesterday (he ended the day on 0.8). We stopped the Propofol, and he is no longer on IV drips (meaning there are no medications constantly being delivered through the IV). He is now on scheduled IV doses of lasix to replace the other diuretic that was being delivered through IV drip. We were also able to continue to wean down the oxygen concentration and when he went to bed last night, he was on 86%, but saturating in the high 80's/low 90's.
Last night was again a long night as Mason continues to have his days/nights backward. He was awake almost every hour and quite agitated when he couldn't do what he wanted to do (roll over, sit up, move around). He is still getting used to his trach/vent tubing and gets frustrated when he isn't able to move it around or move around it. We are still trying to get his medication level just right to keep him better sedated at night and more awake and alert during the day, but having a difficult time. Hopefully we will soon get a handle on it.
We are still praying daily for another miracle and thankful for each moment we get to play and cuddle with our little guy.
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8 comments:
That is the best post I have read in a while. I am so glad he is tolerating so many small changes.
We will continue to pray for the miracle, or a bunch of small miracles.
You are doing awesome and Mason is so blessed to have you and Bill as parents and so many family and friends that love him!
Mason is such an incredible fighter - it must be his incredible parents! So glad to see some improvement - you are all now on our prayer list for my mom's group bible study. There will be extra prayers coming your way every Tuesday night...
I am so glad you are having nice moments together, we are all hoping for a miracle, our hearts and thoughts are with you all. Hugs to little Mason.
Rachael and family
Mason has the strength and courage of a "little tiger". Maybe growing up with his toy tiger collection has helped!
You are all amazing! So happy to hear some encouraging news from you.
Love and miracles,
Pauline and Tom
Mason Ryder- strength of bricks; going for the long shot! You gave him just the right name. The little miracle man. Praying for more miracles and sending hugs around and much love. Kathy & Ed
The little miracle man! We love him!
With love, hugs, prayers and more miracles,
Carrie and Krishnan
Hi Christi - your post today lifted my spirits. Mason is such a strong little guy! Thinking of all of you and sending all my positive thoughts and prayers! My Buddhist sister-in-law has added her prayers for little Mason, too. I hope that is OK. I do believe in miracles. Chris
So wonderful to hear you continuing to enjoy such special moments with Mason. I could come up with some choice screen prints for shirts for him (or you and Bill for that matter). They'd be inappropriate, and likely not appreciated by every doc, but funny. xo Maura
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