Today was a tough one.
When I arrived this morning, his PC02 was 79. The worst it has ever been before. The nurse comforted me and informed me that the IV team was on their way to put an IV line in and give him a lasix dose via IV, something not too common, but an agreed on plan between us and the pulmonologist yesterday for if this situation arrived.
The pitying looks were hard to see and then the pulmonologist arrived to tell me that this was scott's idea (to do IV lasix) and that it would be unusual if this worked. If it didn't change his PC02 than I needed to be prepared for the NICU and possible reintubation, since there is no other explanation they could derive for what was going on with the carbon dioxide, except maybe a virus. I stomached the discussion as much as I could and then cried for awhile when they all left.
I rocked Jules and prayed all day, sitting vigil and waiting the five hours they needed to test the blood gas again. David Loren came to visit and check on us and told me he would take Jules to the NICU if need be.
Anyway, at four his blood gas came back at 57! Yey!
This blew everyone's minds away. We all feel we dodged a bullet today and while the lasix is not safe longterm, this one time dose was important. Grampop (dr. silver) told me to be grateful for Scott, who he thinks would have made a great doctor, because it was scott's idea to do IV lasix and he proposed it to the pulmonologist yesterday. So, thank you Scott!
I am so unhinged and weary from the hospital vigil and constant fear/hope cycle. I can't believe it has been 120 days of this so far. I am so happy for Jules and am hoping this convinces the doctors to take seriously the fact that Jules does not fit into their normal boxes and that diuretics are the key to keeping him stable (Even if that is not the case for any other severe chronic lung diesease kid they have ever treated!)
And the icing on the cake...
Jules smiled at us and I caught it on camera. Scott is uploading the pictures now.
Thanks for all the love, support, thoughts, prayers, and positive energy sent in Julian's direction.
Goodnight,
Joy
6 comments:
I'm so glad to hear you got through this one!
And I'm so glad I'm going to see you soon . .. . can't wait.
Much much love
Laura
AMAZING!!!!!!!!!!! Hurray!! Go baby go! What a day. Excellent excellent excellent news. Fantastic work all Silvers!!! Wow. I can't wait to see the smiling beautiful baby J. Love and prayers, Louise
I popped into picasa to see the new pictures! Julian is UNBELIEVABLY cute and happy and snuggly and smiley!!!
ADDED BONUS: some excellent ones of Aunt Merrie in there too! :oD
Joy and Scot -- A good one, again. Another one to come.
Great news! Good work, Scott!
Toby had the two long term diuretics for a long time, even after we came home, to keep his lungs empty. I'm surprised this was a radical departure. But it goes to show you that parents often know as much about how to help their baby as the docs!
This was such a great post to read. I am so glad that it worked! You guys are inspired parents.
The pictures are adorable! Really, he is a beautiful baby and I LOVE his smile.
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