Monday, September 22, 2008

Yet another good day

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Jaime: Another good day today. I'm trying not to feel like other shoe is going to drop. I've learned to not get too attached to the good days meaning anything long term. I'll enjoy them while they're here. I did freak out a little when he started breathing hard for a little bit tonight. I had a good cry- the lip out, huffing, pouty, sad kind of cry, not a big sobbing wailing one. I feel sad tonight. I really, really want Simon to get better. I really, really want Simon not to die. No one knows how this will go and it's really, really hard.

We had a meeting with our team today that was really good. Basically just a check in with our Cardiologist, the Clinical Nurse Specialist and the Social Worker. We aren't going to change anything major- down a smidge on Milrinone, up a smidge on Enalopril, stay the same with Coreg for a week or so and then eventually work towards a Milrinone wean with a goal of maybe starting that in 2 weeks or so. We talked a bit about worst case scenarios and clarified the parameters we set up (no extraordinary measures if he goes into sudden cardiac arrest, probably no intubation but depends on the cause of the respiratory distress) and then Laura asked Dr. Hunkypants what the best case scenario is for us at this point. She asked, "Is total recovery within the realm of possibilities?" He said, "yes". We were both a little shocked, I think. It's still within the realm of possibilities. Not as likely as it was 6-7 weeks ago, but still possible.

I just don't know how to sit with all the uncertainty sometimes. I want to enjoy the good days and not be so terrified of the hard days. It's just awful when the hard days have the same symptoms that he had when he was sick enough intubated.

Laura: It's funny but I'm taking the other tac and am feeling really hopeful about Simon having a full recovery. We'll know better in two weeks about whether or not we can start the Milrinone wean and then if that's sucessful heading home. On lots of meds but heading home. I just loved hearing that at one end of the spectrum is a full recovery. I know what's at the other end and it's real and it's there but just knowing that it's still a full spectrum is comforting. Yeah he was breathing hard tonight but he also went to sleep and got his heart rate down the 113. Thasss right. 113. Gotta love it.
Tomorrow is another day. We'll see what it brings. Shimmy and I did get a two walk a day pass. We went out for just one today but it was like old times with Shimmy in the sling, checking out people and trees. Granted I was pushing an IV pole, still it felt great to be walking around like that again.

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