[+] Daniel was up until 2 a.m. which meant I was too. He was taking apart everything in his crib (which prompted me to tell the nurses not to give him a screwdriver). Adding to all of this, our roommate last night and her parents were loud so it took awhile to get to sleep. They also had an annoying habit of leaving the TV on. I was in such a foul mood this morning that it took all my self-control not to throw the chair through the TV at Elmo when Sesame Street came on.
[+] I got woken up at 8:00 this morning to go down to radiology with Daniel. At first, I was planning to let him go down alone but my nurse guilt-tripped me into going. (She asked if I wanted to be down to comfort him. Guilt trip laid.) He, however, was not going to be comforted and was a regular grizzly bear. The clot is also still there (though it’s better) and this means 3 months of twice-daily shots (as opposed to the six weeks they originally told me that it would be). I was not happy.
[+] Being wholly sleep-deprived, I started stressing about him not cooperating during his swallow study tomorrow and having to go home on a feeding tube (which would be a new level of purgatory for me, his shot-giver and caregiver). So… pray that he cooperates tomorrow.
[+] Adding to all this (oh yes… there’s more), my laptop was having start-up problems. At this point, I started sobbing. The charge nurse came in and tried to calm me down. She suggested I go through the start-up recovery (which I did… five times) and she offered to take Daniel for some cuddles so I could rest. Bless her. A few times today, I’d pass by and she’d magically have Daniel with her. The second time, he was on her lap cuddling and helping her chart. (Apparently, he reminds her of the little boy of one of the other nurses who was in the same situation and actually *DID* end up on ECMO.) The third time, he was sitting on the counter while she combed his hair after giving him a bath. (He was experimenting with bowel movements while his diaper was off. The bedding got changed and he got a bath — all while I was down at dinner.)
[+] I got a shower at the Ronald McDonald House… and my library book disappeared there. Thankfully, it wasn’t one of the LINK books which have a $115 penalty if they get lost.
[+] I am headed to bed. Daniel seems to have settled down after removing his feeding tube TWICE.