Sunday, April 7, 2013

Round 2: The Big Move and Other Shtuff

Ah, blogging from my own bed. It doesn't get much better than this! Sully and I watched movies together all night and I got to eat REAL FOOD. I could've put him in his crib but I wanted to soak up every moment. This was my first 5.5 day stretch at the hospital and I missed him beyond compare. He looks older, I swear. I'm trying to stock pile as much of him as possible since I go back for another longer stint tomorrow...already. Ouch.

Our new room at Seidman is super nice. More like a business class hotel than a hospital room. Couch is bigger, more seating, more work space, and HUGE windows that Spencer can hang out in. We've been watching workers at the hotel next door. If they don't get better curtains, we'll be able to see all KINDS of things once the hotel opens! Hubba hubba.

So far the PICC line is working well. I'm paranoid about something happening to it but that's never going to end. The bacteria that caused the central line infection was a type of strep from his mouth. It's a super common bacteria associated with his chemo. It was probably in his blood from his mouth and bacteria loves plastic so it went right to the line. He'll finish his antibiotics this Friday. He only has little scars from the central line.

Poor guy was really antsy and agitated our first night in the room. They said older kids sometimes say the medications and steroids make them feel uncomfortable in their skin, restless. Spencer can't communicate how he's feeling. So they tried to give him Ativan but we were "behind the 8-ball" at that point. They decided to give it to him on a schedule to prevent agitation but I'm not sure if it's working. He's had trouble sleeping unless they've given him Benedryl (for nausea and skin irritation from medical tape).

Speaking of nausea, he threw up 3 times this week which can be related to the meds, of course. But it can also be related to what he was drinking/eating. Chemo can make you more sensitive and he threw up after bottles every time. Poor kid. I despise throwing up. But he bounced back immediately afterwards like nothing happened. Besides that, he's pretty much been himself! He's not drinking as much (gets IV fluids at night) and at times he's moody but nothing horrific. I imagine I'd be much worse in his position. The rest of his hair is thinning and he has a hemorrhage in one of his eyes, which will absorb, but overall, he's doing OK.

The chemo for this round stopped Wednesday afternoon so we're in our waiting period. There is no definite home-going day. We have to wait for him to bottom out (which he did on Friday) and recover. Due to this round being so intense, he'll stay lower longer. He has no infection-fighters right now so he needs to be in more of a bubble. In some situations, the kids would get to go home while their numbers recover but he's too little. If he gets an infection, they want to be on it within half an hour and we couldn't even get to the hospital that fast. So we're there until they say otherwise. If you don't count the mini-break, it's been 18 days since we checked in. Technically, we've been physically there for 13 days. We were there for 21 days last time but it was less hardcore.

I do homework to pass time. I applied to 5 schools and worked on financial aid. I pay bills and organize our finances. I play with Spencer and do whatever he needs done. We watch TV and read. Visitors help. he loves to see different faces. I made a list of Spring/Summer things to do for whenever he's on hospital breaks during good weather. It looks like this whole shebang won't be over until August or September. By then, Todd and I will need some sort of mini-vacation...even if we can't afford it...even if it's just Kalahari or something. I don't get to see Sully a lot but I don't get to see Todd at all.

Speaking of Sully, he's waking up. It's going to be 63 degrees in Brunswick today so I'm getting him out of this house! Probably just to shop but when you don't leave one room for 5.5 days, even Target seems glamorous!! Then I have to study hardcore for my Inorganic Chem test...until 9:00 when Game Of Thrones is on!!!!

Happy Sunday!

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