Holding my breath

L was admitted to the hospital on Saturday with the ammonia level of 237. We did the usual treatment of lipids and D-5 and at first they were going down to 147. So we figured good deal we’ll be home Sunday. Well no such luck. They checked his ammonia this morning and his level was 353. So now L is in the PICU receiving his meds through his IV Port in addition to the lipids and D-5. The PICU is only required for monitoring him more closely because the nurses on the regular floor could do the same work but they cannot closely monitor him.

It worries me that his level went up like it did because this brings more reality to the fact that I can be loosing him at any point. If it was me (or even you) he would be in a coma or perhaps even dead. This reality is heartbreaking and brings me to tears and I often wonder how much longer I have with him. He is so precious. Despite his behavioral issues due to the brain damage and his delayed development, he is such a gentle soul. He is loving and he is fun and keeps my life interesting and laughing.

Tonight I am at home while my boyfriend and ex-husband keep watch over him in shifts. It is very hard not being there constantly because I am sorry but as a mother, I have to and should be there. I recognize however that even I need a break to get some sleep, take a shower and just breathe for a minute, oh and well do my homework. I must remind myself to take care of me in these times but I am not very good at putting myself first.

I long for the days of normal in which we can simply go on with our lifes, struggle to pay our bills and but food on the table, but still normal in the sense that we are working, enjoying the children, and be a family as opposed to our second home being the 7th floor of the hospital.


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