Archive for October, 2011

Gtube is in

Wednesday, October 19th, 2011

Well, it’s done. Monday afternoon, Maria’s feeding tube was placed in her belly. The surgery went well. It was so fast that Manoli and I barely finished our lunch downstairs when they paged us to come to the waiting room. I always hate seeing her in the recovery room (and fortunately, I always forget how bad it is). She has the oxygen mask on (I call it the gas mask), her eyes are red and wild/confused. She made a couple poopy noises, which I took to mean pain because everyone knows you don’t poop right after surgery. But it really was poop, and a stinky one at that (I only say this because they changed her when we got to her hospital room and put it in the garbage in the room, which wasn’t changed until the next day–yucko).

It took a while to find our room because the nurse first took us to the phone #, instead of the room #, then to the wrong floor. We finally got settled in, and Manolis went home at dinner time or so. At 6ish I asked for pain medicine because Maria seemed to be uncomfortable, they gave her a Tylenol suppository–I assumed Tylenol + codeine, but no, plan Tylenol. I asked for another dose at midnight-ish, the nurse said she wasn’t due until 1am. Apparently we were asleep (I was sleeping with Maria) at 1, because she didn’t end up getting her 2nd dose until 2:30am. When I mentioned to the surgeon intern/resident/whatever he was that I didn’t think her pain had been managed adequately, he said surgery like this doesn’t really hurt. Well, how about if I stab you in the stomach 3 times and then you can tell me how much it hurts.

The anesthesiologist agreed to put 2 IVs in Maria, just in case we had problems like last time, but they never flushed the unused one. Never. And when the nurse was removing the IVs so we could go home, the “spare” one wasn’t even in her skin anymore. Great back-up, huh? Also, she is listed as having MRSA, since she tested positive for it last time she was in the hospital. That means everyone who comes in the room (except parents) has to put on a gown and gloves. Recovery room nurse said Maria has to test negative 3 times in a row before they’d list her as negative for MRSA. So I kept asking them when they were going to swab her, and they never did! So that means next time she goes to the hospital, it will be the same thing–gowns and gloves. I like that hospital in many ways, but they have been doing very stupid things recently.

At 6am, they did the first tube feeding. The nurse who did it had never done it before, so had to have another nurse come check it, which she did, w/o saying a word to me. Great training for us… Maria tolerated that feed well, then they gave her another one at 11am, that was fine too, so they said we could go home. Can you believe it? A predicted overnight stay was really just overnight?! Even though I could tell Maria was uncomfortable, she ate yogurt for breakfast and pudding for lunch; ate well, seemed to enjoy it, had fun playing her anticipation game because the food is cold and she’s sensitive to cold. We got out of there by 5pm. The safety vest and seat belt on Maria’s wheelchair are either close to, or on top of, the button, so I folded over one of my shirts to protect it and we put the belt/vest on kinda loose and funky to make it home.

I could tell she was really feeling it when we got home, so I gave her her seizure meds (which she didn’t get all of her doses at the hospital–great, huh? Not getting all her proper doses of SEIZURE Medicine) and Tylenol. Waited just a bit, then gave her some of her codeine and some valium for good measure. So then she just looked uncomfortable and stoned. I did an overnight feed, which seemed to work ok. So I guess all is well, although I can tell it bothers her, of course, but in a couple days it should feel better. I know it’s the right thing, but I’m still a llittle sad we had to do it. It will be so great for giving her meds at least.

So now maybe I’ll have time to focus on what to do with my little pain issue….

Splint Is Off

Thursday, October 6th, 2011

Maria got her splint off on Monday and seemed pretty happy to be free. She is supposed to take it really easy and then she sees the orthopedist again in three weeks. He said she will almost certainly start on a calcium supplement at some point, but not right now. Cathy is concerned Maria won’t be able to do hippotherapy, but the doctor said it would probably be fine.

She is scheduled for her g-tube surgery in a week and a half. She supposed to stay one day in the hospital [pause for laughter]. She has never stayed only one day in the hospital. We expect 2-3. However once it’s done, it will be much easier to keep her nutrition up so she should get stronger pretty quickly.