Sunday, March 25, 2012

Rainy Sunday bliss

We've had rain pretty much all day today.

Normally that would stink, since Saturdays are now consumed by baseball, and we really want to use our free Legoland passes!
But the rain is always much needed here, and it was much needed for our household as well.
My parents and sister went home yesterday. So with the rain, we watched movies and hung out at home all day long! We loved the lazy day, and I feel refreshed and ready to start some battles for Jax tomorrow!
March has gone by sooo slow. I'm not sure if its because daddy is so busy at work, or because I'm anticipating Jax admission April 10th. His GJ tube is not holding water anymore. I was hoping to limp along until his admission, but I just realized that is still two weeks away! I don't think it will last that long. His GI is going to put him under to change it, so she can poke around in there a little bit. She wants to check and see if his nissen is in fact not working, even though I already know its not. I demanded last week that something else be done, if they aren't willing to fix his nissen. I'm so tired of holding a grey baby, sometimes having to bag him back to life. Since I'm also arguing about the need to give him a port, and check and see what access he has, I'm hoping this admission will get the job done. I told GI I can't do this anymore. I took some pictures after a bad retching/aspirating episode last week. I didn't have to bag him, but he looked terrible. This is about 10 minutes after the episode ended and he was passed out.
Notice his color, this is after the grey went away and I put him on his vent. He is still very pale, but also noticed what is still in the back of his throat! I didn't see this until I put the pictures on the computer. I wonder how much of that went into the lungs as well!

My ped is also not listening to me, and he seems to enjoy a good argue! How many peds am I going to have to go through? Pulmo and cardio are the only two right now that understand what this boy is capable of. Maybe its because they are heart and lung doctors, and Jax heart and lungs aren't so hot. They know what can happen with one little slip! I know all of these docs are new, and haven't seen him really sick yet, but that's why they need to listen to me! Pulmo agreed that we need to have his access looked at, and if I have to, I'll get cardio in on it as well, even though she is at a different hospital!
I refuse to wait until my child is coding before seeing what access he has left! Every time I hold him blue in my arms, I wonder if this is the time I won't be able to bring him back on my own. GI told me that in an emergency they can get a line in the neck or groin.
I chuckled at her and calmly told her that his neck is unusable because both subclavian veins are gone! At least one groin is already toast, and we aren't sure about the other.

Are you ready to listen to this momma yet?


Toni said...

We live in Fresno and had the rain yesterday also. We had a get together that we do monthly with two other families, one has two 5 yr. olds adopted from Russia, one has a 7 year old from Kaz and a 12 year old from China, and then our son who is 8 from Kaz and our home grown daughter who is 16, her best friend and my parents. The kids had a ball playing in the house, and we made Easter sugar cookies and they decorated them. I agree with you that it is nice sometimes to "bond" in the house because of the rainy weather!

Not a Perfect Mom said...

how frustrating! I'm so sorry the new ped isn't on the same page as you...
like you don't know what's best for Jax? Like you haven't been the one constantly caring for him?
and good luck tomorrow...I'll be thinking of you!

Becca said...

Oh, no, just catching up...this is so frustrating. I can't believe that so many people won't listen to you!! You shouldn't have to keep going through this. :-( A complete team *has* to be able to agree one day and be able to come up with a course of action that will keep your boy healthy and happy. (((hugs)))