Thursday, December 30, 2010


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Jaime here:
Today I am angry.  I am so tired and am I so angry.  I am angry that we are in the damn hospital again.  I'm angry that none of us are getting enough sleep.  I'm angry that my son is stuck in an environment where he can't touch anything because it's dangerous, germ-wise for him, or he's dangerous to someone else. I'm angry that Simon has to wear a mask every time he leaves our room.  I'm angry that I can't figure out what we need from friends who are offering to help, even though we've done this before.  I'm angry that I don't feel like it's safe for friends with little kids to visit because Simon has something potentially dangerous for them.

I'm angry that maybe this is caused by RSV and we didn't get a shot to prevent it because we all thought he was old enough not to  need it.  I'm angry that I have zero feelings right now for anyone, except Simon,other than annoyance, frustration and impatience.  I'm angry that our roommates left and they had a space 2x as big as ours with a window and we have been told that we could move over there but housekeeping hasn't come so we can't move and the garbage is overflowing and it feels like we've been living in a cave.  I am angry that the standard of nursing attention is so much lower on the floor versus the ICU or that our expectations are so much higher and that makes us look not like the "on top of it parents" but the "annoying parents".

I'm angry that Simon's pulse oximeter is malfunctioning and the dude that came to fix it basically said it's b/c Simon is too wiggly.  Bullshit.  It's a children's hospital.  FIX IT. This frickin number is the only thing that is keeping us in the hospital.  If you don't fix it, I spend all night being woken up by an alarm that says that my son has no oxygen in his blood when, in fact, he's wide awake and pissed about being in the hospital and very much alive. I'm pissed that the light in our area is broken so we only have bright light.  I'm pissed that our chair bed is broken so if you stand on it (which you have to do to get to Simon if the bed is down) you practically break your neck b/c it slides apart.  And I told a nurse about it 2 days ago.  And I'm too damn tired to really pitch a fit.

I'm angry that this is how we had to spend our vacation.  We got three days.  Three.  It was supposed to be almost 2 weeks. I so needed this time to reboot and instead I'm running on reserves.  I'm angry that we might spend New Year's Eve in a goddamn hospital instead of Gualala or even our house.

I think that's it.  I'm sure I'll be overflowing with gratitude tomorrow when I've slept and been in the sun, but today I'm surly.

Oh, and I'm pissed that the delivery guy who is trying to deliver our freezer flaked yesterday, knowing that one of us left the hospital to be home to receive it.  A-hole.


Elizabeth Henry said...

Holding a big space for you all tonight.

Momastery said...

damnit. damnit. damnit.

i don't know what else to say except that i love your beautiful little family and that simon. and none of it's fair or right but that boy's smile sure is something. that's all i know.

all the love in my heart from my little house to yours.

love, peace, and good nurses...


Meghan said...

Ok....I know you do not know me but my 12 year old daughter was diagnosed with Hypertrophic Cardiomyopathy 2 years ago. I know you were pissed in this blog but I love it....I can not tell you how many times I have felt the same way when plans get ruin and stress happens because of this damn disease. You have an incredible ability to express what we all feel. I instead break down and just swear at anyone who pisses me off and get no-where. I am so happy for your family that Simon pulled through it and just as important....Im glad you both as his parents pulled through it. I hate this time of year but you have given me hope that it wont be as scary as I believed it would be! Your blog is awesome!

Meghan said...

I know you dont know me but my name is Meghan and my 12 year old daughter was diagnosed with Hypertrophic Cardiomyopathy 2 years ago on December 30th. I just want to say that as much as I know how angry you were in this blog....I loved reading it. It describes so perfectly how so many of us feel. I do not have the ability to express it like you did but related to it all. I am happy to hear that you all made it through Simon's hospital stay and he is doing well. I will be watching your blog simply because if nothing makes me smile that someone out there feels what I do. Thank you for that.