Super quick update

We have been in four days now. Sebastian is off the IV fluids and officially diagnosed with MRSA, which he been colonised with since forever, now it is rearing it's ugly head. He is on 2 steroids, breathing treatments every 4 hours (bumped down from every three hours this morning), benadryl and an IV antibiotic that runs over a two hour course every since hours (increased from every seven hours yesterday)

He has 4 different IVs now and hopefully/most likely placing a PICC line tomorrow. The most recent one to go was on his left bicep which infiltrated. We have no ideal how long the vancomycin leaked under his skin but is it pretty swollen and bruised , you can tell it hurts a lot more then he is telling us. I'm keeping my fingers crossed on no tissue damage, which everyone says there should none of but after reading a bit on the topic I am nervous.

Yesterday was a bad, ugly day. Between all the medications, treatments, vitals, repeated sticking and just plain coughing his head off the kid couldn't get any quality sleep and was fatigued. He finally passed out and his sats stayed in the high 80's - low 90's and this was on 40% oxygen which was really scary. We bumped it up to 50% and he rose to around 94 or so then eventually climbed upwards in time.
He was just so tired he couldn't even cough effectively enough to clear his airway.

Since he has MRSA was Sebastian isn't allowed outside his room and it is so tiny that when I fold out the recliner at night it completely blocks off the bathroom door one way and if it slides downwards a few inches it blocks the entrance. I would say it is easily about half the size of a normal hospital room. Needless to say we are all going stir crazy - especially the kid.

I am feeling bad for Sebastian, not only is he sick , he is getting traumatised as well. As soon as someone walks in the door with that yellow gown on he starts to meltdown , since we are in isolation that means everyone but us wear a yellow gown and gloves. Today he is starting to back up into the corner behind the door crying 'no,no,no,no" when ever some comes in. Even breathing treatments and trach care have become serious fights. He spends most of his time (unstandable) upset and this morning I saw his moving around in his bed while sleeping saying "no,no" while grabbing at his IV site. If a staff member is in the room and one of us pick him up he goes ballistic because he thinks something is about to happen , which , unfortunately is more often true then not.