Thursday, September 18, 2008

Another bit of rough road

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Here we are again with another really rough day. Simon had a tough night with waking and vomiting at 1am and not getting back to sleep for a couple of hours and then a repeat performance at 7am.

Starting at 9 we went back to the three hour feeds of 100ml and he took that really well with just a little bit of retching but not losing any volume. He took an hour and a half nap right after and I thought we were in for a good day. Sadly enough things just went downhill from there. Not a steep incline but downhill. We learned that Simon's BNP has increased (about 1000 points) instead of the slow but steady decline we were hoping for, he was breathing harder, and at the 12pm feed he vomited up quite a bit of it.

Dr Rosenfeld said that it's not so much the # itself that we're worried about week to week but what we're looking for now are trends that fall in the 4-6 week range. Simon's only 2 weeks into this new regiment of medication so while it's not what we'd like to see it's also not anything that the doctors here are interested in acting on. I hear the words but my heart still feels like it all of a sudden is made of lead.
Although now (four hours later) we're talking about putting him on another strong heart med Coreg that one Cardiologist has had success with but hasn't really been tested on babies as young as Simon. The unfortunate trend on Milrinone is that Simon's heart rate is creeping up. Not drastically but it is. Simon got an NG break after the 12pm feed when we pulled it out and slept for four and a half hours and was happy as a clam until we had to put it back in for his next feeding. He threw up again and both Jaime and I as well as the team feel like it's time for one last ditch effort (24 hour feeding with a lot less each hour) before we go to an NJ tube and take his stomach out of the equation completely. That also means putting splints on his arms so that there's no chance that he could grab it.
For my sweet beautiful book reading, pacifier mastering, starting to wave goodbye and hello to people boy, my heart is breaking.
I don't quite understand what's happening but we're back at the point where they've asked us to have in his chart our wishes in case of emergency. They keep saying it's not because they're imagining something happening but they want it in there so just in case Jaime and I don't have to make a decision in the moment over the weekend when our regular doctors aren't here. It's completely unreal to have to verbalize once again essentially a DNR for my son. It's insanity. I've had some really good cries today with my mom, alone in the car, and in the hallway when I just couldn't be there for another procedure that was pissing off Simon (just changing the dressing on his face and his Broviac).
I don't know where we go from here. Shimmy is so beautiful sleeping in Jaime's arms. You can't tell that his heart is failing. He is perfect and so much love in such a small package.
Thank you for reading, thank you for leaving comments, thank you for being connected to this amazing being.
Thank you.



Anonymous said...

Laura, it was with tears in my eyes that I read your post just now. There have been so many days filled with lighter note. Days of outings in the sunshine, book reading, cereal eating, your Mom feeding him (wow) and now the weight is back.

There are no words that can express the pain that I share with you, Jaime and Simon. Please know that we are there in spirit with all of you.

With love and prayers,

Carol, Pat and Katie
(Z and Cecelia, too!)

Anonymous said...

Dear Laura and Jaime,

My heart is breaking for you. I've been reading your blogs daily and reveling in the more positive trends lately. I am so sorry that you're on this rollercoaster.

It's incredible what an impact this little boy is having on so many people near and far! But it's not just Simon doing that -- you are too. You're an amazing couple and amazing parents, and realize that you're inspiring to everyone somehow connected to you, including me.

Sending healing thoughts and prayers from New York,

Kim West
(I work with MM Eileen!)

Anna B. said...

sending love, light, hope, love and love to you all. we are with you. abg/hlh

Anonymous said...

Laura, Jaime and Simon,
I have noticed myself happier in the last week, reading your updates and feeling hopeful, and notice today that here is this roller coaster again. I cannot at all fathom where your source of strength comes from to keep coming back to the moment with yourselves, with Simon, but I am in awe of you three. You continue to touch my heart every day. I am glad to be on this ride, in my own small way, helping, I hope, to carry a teeny bit of the load with you.
Much love,
Wowlvenn and Elka

Anonymous said...

man, oh man! my family is sending so many prayers your way - its not even funny! I'm a friend of Liz's and well...we just think about you guys all the time. hang in there.

lauren, john, sam and jake!

Anonymous said...

sweet laura, jaime and simon-
hang in there. tomorrow is another day so just choose hope! i am thinking of you all a million times a day. sending my love and prayers from the east coast.

sam camera

Anonymous said...

Know that we hold you all close in our hearts and thoughts.
Remember that thing about roller coasters - they also go up...
Love and light from us both here in Alaska
kate and nj