Too bad Ashton didn’t know he went anywhere.
During rounds on Monday, we were sent “home” to BMT. I was assured he would have adequate care in his delicate condition. Epic fail.
To the credit of our awesome doctors, he was holding his own on a respiratory level. He really did seem stable (ish). Everything is ish. Ashton(ish).
When we rolled back in to BMT, we were greeted with waves and smiles and it did, oddly, feel like home. I’m not sure that’s ok. (I crave a real home) When we got in to our new room, we could quickly ascertain that our ONE nurse seemed a bit overwhelmed. Linda and I (ok, Linda did it all) quickly unpacked LIFE from the two-level rolling cart. AAAAAAAnd, he promptly evacuated his bowels, as his gvhd is, along with skin and other areas, is attacking his intestines. He does not go long with this occurring. It is PARAMOUNT that his needs are met immediately in order to prevent infection. Well, let’s just say Nonni had to do a lil’ foot-stomping as I had slipped out to shower.
Suddenly, hair wet, I got a text ( I was at the Ron Don house) I needed to be there ASAP to help advocate for Ash as things were not right somehow. Ask Linda how fast I got there and ask me how to gauge how out of shape I am from such a sedentary life–that sprint nearly gave me a coronary.
I am no more, “pain-in-the-ass-mommy”, I am scary MOMMY. Things just were not happening in a timely fashion. It was slow motion compared to ICU. In a critical state, you would want people to be jumping. These people were sauntering.
They “changed” him twice, nauseatingly slow. They left.
He seemed to be calm and stable. Linda and I shared a salad and talked and stared at his monitor. I said, “Jesus, I may as well go to nursing school.” His heart rate started to climb, per usual. His chest started caving. His oxygen was 99% but he was working like a team of oxen to get it. I repositioned him, as I have learned to do. It helped briefly. Life, 3 minutes. Then, a sweet girl came in, our 1:1 pca, who basically has the same skills as I have except she is not allowed to silence a beeper and I am not allowed a key to the linen room. Whatever.
She paged the nurse. twice. no nurse arrived. Mind you, we are the room by the NURSE STATION.
I pushed the button. no nurse. I pushed the button again. I said, can we get ANY NURSE/ ANY DOCTOR ANYBODY WITH A MEDICAL BACKGROUND in here?
And that was the end of our field trip.
We later apologized for being obnoxious. He just wasn’t ready for the transition. I have had to stand up for him , even in ICU. When we got back there, they wanted the poor ICU nurse to change his full body dressing all by herself based on a drawing someone did 6 days ago.(THIS IS IMPOSSIBLE) I heard her talking to wound care while I was in the restroom and I came out and had t , again be SCARY MOMMY. WTF! I said, you can’t spare a person on wound team for this kid. Fuck, I will do it myself before you put this woman thru this. I have at least seen it and assisted with it. ( not my favorite thing to do, but, nonetheless).
She, the wound care lady, came back with an attitude like we had interrupted her lunch. (bitch slap)
Then, I had requested Ash get more meds while getting wound care. No one had indicated that in the computer. STUPID computers seem to rule everything, including humanity. A boy in agony and you cannot overrule a computer status?
Can you tell? I am jaded. I have faith in the science. But, humans make mistakes, I know. He is not the only kid here, I know. I seriously don’t even care about Eboli and yeah, I probably should be freaking out about that, too and starting prayer chains and stuff. I only care about his room and my big kids’ address.
Ok, this was an angry(ish) post. I had been sent to the Ron Don to sleep. There is no insulation and an incessantly screaming baby next door. What size sledgehammer do I need to make me sleep? How do you spell rohypnol?
I am just tired and I need to pack my house and move it in to a storage unit and my body hurts and any time I hear myself complain I remember I do not have GvHD and I can open my eyes today