I've drafted this message early, hopefully I'll just add a few details at the end and pass on shortly, not sure how it will flow, hopefully nice and smooth and transparent like his IV drip - hoping we can lose that soon, still had two ports in each arm (since surgery they've been moved down towards his hands).
Oh dear it's bad enough I know most of the baristas at Biggby Coffee, now I'm getting to be pretty familiar with some of their regulars :-).Austin and I were up at 5:30 am, that's when things start picking up on the floor, he slept well and managed well through the heparin shots (in his stomach). Hmmm, just think how much laundry I could have done by now, you know I'm missing home when I'm thinking about laundry. We've been dealing with incontinence, especially during the night and with Austin being pumped with IV fluids there is not much I can do about it except to reassure him that it's okay, he's always apologizing. Through everything he has always remembered his manners.
We've gotten pretty good at managing things although there have been a few things added such as the heparin shots (in the stomach - he never flinches) and for a while the boots (leg compressors or what ever you'd like to call them). He did well with them considering they presented a couple of things for him to deal with in the sensory realm, the pressure on his legs and the noise of the machine.
Sadly, Austin got sick again this morning at 7:30 am, I'm not sure what's going on, it could simply be all the meds and IVs he's on. He's gotten very good at catching it lately, I had stepped out of the room for a bathroom break and when I returned he informed me he caught it all (in his pink bucket) and he didn't douse his Belle doll. He has been so polite though this ordeal. I typically take care of most of his personal care but he cracked his big brother up when a female nurse assistant took him into the bathroom and he told her "No looking", I guess all that teaching I've done about what we do in public or private has sunk in. When this is all said and done maybe I'll do a reference sheet for families on what to expect during a hospital stay, what they should prepare and how to assist the staff in supporting your child. It would be nice if hospitals (no matter what hospital you went to) had standard social stories on procedures, who knows it could even be helpful with patients suffering from dementia (for those who don't know what a social story is it is simply a story using pictures explain what will happen and how, used often for children with disabilities.)
The hospital stay has wreaked havoc on our routines and diets, I just try to keep as much as a routine for him as possible, and having our traveling companions (Mickey Mouse, Belle and Austin Moose) at least provides something consistent no matter where we are. It's a good thing our new room is about as far away as you can get from Biggby, Subway and the Cafeteria, I get a little more exercise; although being on the 6th floor here I'm not doing the stairs like I was doing in the B building.
Mom's judging his pain and assisting the staff in identifying when to treat, he's doing well with just one Tylenol 3 every 4 hours.
Austin enjoyed talking to Gen last night after her game, it's nice to see him smile when he talks to his sisters. Before she left for Milwaukee he told her to get five goals and after two games I think she has 3 goals and 1 assist. Its hard being a mom when you can't be everywhere at the same time.
LOL - whenever I work at the Joe when I card people I always inform them they can drink if I'm old enough to be their mother, feeling a little older here since a lot of the staff (nurses, assistants, and doctors) if I carded them I think I'm old enough to be their mother too!
Surgery rounds will start about 8:30 am, not sure when we'll see our team from Internal Medicine or Hematology, until then we're just sitting pretty with Disney Junior or the History Channel on.
Hugs to all, one day soon, when he's well enough I'm looking forward to sending out that message that says we're going home. Sally
Evening Update …
Short and sweet, his hemoglobin count is 10.4. Haven't seen hematology today but I do believe this is a very good sign (last count was 8.6).
Sadly this morning he continued to get sick, nothing to eat today, he has ileus, basically his bowels are asleep. I guess it happens quite often after abdominal surgery. No food today, we're going to try to get him up and moving more but now he's so tired from the anti-nausea med I hate to wake him up. He hasn't gotten sick in about 6 hours now so we've finally given him his morning meds (at least he got them in). So far they are staying down and Mickey is clean and dry, WooHoo!
I'm hoping that maybe Monday will be the magic day, he's got to be able to eat and keep it down before I can get him home, not even sure if that will be possible (hoping) I guess tomorrow we can try ice chips - oh joy! I hate weekends here such limited choices for dinner - I know "whine, whine, whine" but isn't it great that now I have time to "whine" about something so silly! I think when we get home I'm going to be cooking a couple of nice steaks :-).
Hugs, Sally
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