Quick update

Hi all,

Erin is home. She ended up staying in hospital from Friday to Sunday. She's on antibiotics now, and had a steroid dose in the hospital; which seems to have worked wonders on her. She now is acting completely well. Much like Alex was until her experimental drug treatments ended. We only had to give the kids the experimental drug/placebo for two days following their surgeries. Alex is now not doing very well. It seems like all I do all day is beg, plead or fight with her about drinking more. She's pretty sore.

All I can say is that if she ends up going into the hospital because of dehydration, DoT will be the one accompanying her. I can't face another night in there.

I hope this ends soon. I'm reaching the end of my rope. :-)

On other happier news, yesterday we went to a reunion of the families that travelled to China at the same time as we did to get the girls. It was a really great time. I so enjoyed catching up with the people who were there. The only problem was that the day went by far too quickly. Well, that and the fact that the girls just had their tonsils out so weren't feeling too great and couldn't really participate much.

I'll try to post some pictures from the day when I get a chance.

That's it for now.

K..

How much does one kid have to drink? (Updated)

So, three rounds of antibiotics and one round of steroids later, E is doing pretty well. She says her throat doesn't hurt anymore, and was very upset that I wouldn't share my pizza at lunch with her. (While Popsicles and ice cream may be all she's supposed to eat these days, it's not enough to carry me through... although there are not a lot of other choices in the snack shop downstairs.) In fact the ENT team has cleared her to go home this afternoon, if she drinks enough. Which is turning out to be the problem. She doesn't have a sore throat, she's just not thirsty and not really interested in drinking. She's still hooked up to an IV line too, so I don't imagine that's helping.

She has also decided that she doesn't want to go home. Although one might think it's because she having such great quality time with mom, rather it's because she doesn't want them to take the IV off of her. And it's not even the idea of taking out the line, I don't think. It's the tape they use to keep it on. All the nurses and residents here have taken great pains to tell her that it doesn't hurt, it just feels like Band-Aids. And there lays the problem. E (and A too, for that matter) love to wear Band-Aids, but never want to take them off because they think it hurts. No matter how many times we have taken Band-Aids off, and it didn't hurt, we've been unable to can't change their minds about this. So E thinks she can go through the rest of her days, I guess, in this hospital room, with this IV line attached.

Oh, and I just found out that they are giving me a prescription for the antibiotic she's on, so we can give it to her at home. It tastes horrible, according to the nurses here, and E agrees. It's becoming more and more difficult to get her to take it. In fact, about 10 minutes ago it took the nurse and I both holding her down in her bed with strangle holds and forcing it into her mouth. (Thankfully, she doesn't seem to have yet realized she could just spit it out, and once it's in her mouth she swallows it.) I guess if she's still on the antibiotic come Monday, DoT will have to come home during his breaks in his French training, to help hold her down to take her meds. :-)

No decision yet on whether or not she will be discharged today. I guess I should ask exactly how many cups of apple juice she needs to drink before they'll let her go home.*** And then I can line them up on her tray and force them into her like I am the antibiotics.

K...

*** Update -- okay, so the official answer is, 80 mL per hour and 960 mL per day. So about four times as much as she is. Oh yeah, it is not looking good for us getting out of here today.

Back in hospital

Okay, so this morning I finally decided enough was enough, after fighting constantly with E and still not successfully getting her to take in much liquid. We arrived back at CHEO late morning, and not long after that E was admitted. Since then she's had an IV to get her re-hydrated (she was dehydrated), pain meds, and the doctor has ordered some antibiotics. She still isn't doing great. Still fighting with me a lot when I try to get her to drink anything. But she is still on the IV, so it's less of an issue. Until tomorrow when they will probably discharge her again.

I'm late getting this post up because E's been watching videos on my laptop, and playing her first computer game. Clicking on a paintbrush and then "painting" a colouring page. She's not bad at it considering she's having to use her left hand... they put the IV in the right hand and she fought so much when they put it in her that they had to really strap her onto the board that comes with it. She doesn't have much movement in her right hand as a result. :-) DoT will probably be happy to read this. Both E and A still occasionally switch back and forth with which hand they use, but it seems they both consistently prefer their right hand. And DoT would love another lefty in the family. There's still hope for B, I guess.

B is doing fine. He's a bit difficult because the girls are wanting more attention from us than normal, and more than he'd like us to pay to them. I'm sure DoT will be happy to get both A and B to bed tonight. He's got his hands full, I'm sure.

A continues to be "well". You'd never know she had her tonsils out yesterday, except for a bit of a squeaky voice when she talks. And the fact that she is really milking this and getting basically as many Popsicles and as much ice cream as she likes. (B too, because really it's just easier to give in than to try to explain to a 2 year-old that his sister is having a Popsicle/ice cream and he can't have it.)

Finally (Cathy B - in response to your comment), I haven't gone to the docs to demand the "real drugs" for E, but the thought has crossed my mind more than once to just dip into A's bottle of the medicine and give it to E. If only I wasn't so rules-oriented, and could live with the thought of messing with a "randomized controlled double blinded study" and inadvertently having the study results skewed, possibly depriving millions of poor little children without tonsils of a truly miraculous drug. :-)

Anyhow, that's it for tonight. Here's hoping for a good night and a turning point in E's recovery.

The storm before the calm?

Oh man, what a night. I spoke too soon yesterday when I said things were going pretty well. I guess I should have known. Things are always worse at night. Last night E was up, screaming, every couple of hours. And it often took almost an hour to get her calmed down enough to go back to sleep. It was rough. She really, really, didn't want to drink anything. And in fact, refused even to swallow her own spit. I'm hoping for a big improvement today, or we just might end up back at the hospital. She's going to be dehydrated soon, if we don't get some liquid into her.

A woke up only once, and I don't think it was because of her throat. She just slept a fair amount during the day yesterday, and she wasn't really that tired. She wanted to play.

E's still asleep right now, so I don't know how she'll be yet this morning, but I suspect that after a few hours of not swallowing she won't particularly want to take it up again. It's going to be a battle.

A is wide awake, acting like her normal self. Our biggest trouble with A right now is trying to get her to not run and jump around. The girls are not supposed to run or jump, or do anything really active, for two weeks. How do you convince a four year-old, who runs everywhere, not to run?

Surgery done

So here I sit beside E's bed at the Children's Hospital, and what do you know, CHEO has an unsecured network enabling me to check in with you all.

Both surgeries are done, and from what the doctor tells us, they went fine. Both girls bled a bit during the surgery, but not much. We're in the recovery room right now waiting for the girls to have drank enough that the hospital staff are willing to let then out of here. Which judging by A would have been about a half hour I go, I'm guessing; and judging by E may not be until tomorrow. :-) Kidding. We'll get out of here sooner or later.

The girls are participating in a randomized, double-blind drug trial to test out the dosing of a new medication, not yet approved for tonsillectomies in Canada. We know from the forms that one of them has been given the drug and one has been given a placebo. And now, shortly after the A's surgery (and a couple of hours after E's surgery), A is singing, talking, and playing; has drank I don't know how many cups of apple juice; and eaten at least three Popsicles. E is sleeping right now after her second dose of morphine; not yet having finished one cup of apple juice; and choking down a half a Popsicle. Hmmmm, which one do you think is on the real drug? :-)

Actually, I'm pleasantly surprised. A is doing great, with little to no complaining about her throat. And even E, who obviously is less comfortable following the surgery, hasn't been complaining too much. I feared we might have to non-stop crying kids, who both refused to drink anything. So far, we're doing okay. However, one of the nurses here did warn me that often kids do better for the first few days, and then around day 3 or 4 it gets a bit worse. We'll wait and see, I guess. Nothing else we can do.

I'll update again later, if I get a chance.

My, how time flies

So, after being told to expect to have the tonsil surgeries in two months, we are now scheduled for this Thursday. The hospital called last Friday, but we were unsure until today as to whether or not the surgeries would go ahead, since E had ibuprofen last week. We had previously been told no ibuprofen for two weeks before the surgery, but apparently it's not that big of a deal, since the surgeries are going ahead.

So, this Thursday, E and A will both have their tonsils and possibly adenoids removed. And then we somehow survive the following two weeks, after which life becomes perfect bliss. Or at least it feels that way after the previous two weeks with two four-year-olds in pain, and the previous three plus years of having someone in the household with a fever every 2 to 3 weeks. Or that's the plan. :-)

Prayers, crossed-fingers, good vibes (or whatever else might be your particular approach) are much appreciated.

K...

Medical update

Today we had the girls back in to CHEO (the Children's hospital here) to meet with the ENT team, to discuss getting their tonsils out. The Infectious Disease team at CHEO and DoT believe the girls have Marshall's Syndrome (I'm more sceptical... big surprise there, eh?), which is what is causing their fevers. A few medical studies have been done which suggest that if this is the problem, then removing their tonsils will stop the fevers (anywhere between a 50% chance and a 90% chance, depending on the study you believe). So, we have signed the papers to take out their tonsils.

It's a fairly easy surgery (only about 45 minutes) followed by what was described to us as "2 weeks of hell", while the girls recover. We've decided to have the two girls' surgeries at the same time... two times the amount of "hell", but for only half as long, I guess. :-) Of course, that assumes that neither one of them will have a fever when their surgery is scheduled, because if they have a fever the surgery will be cancelled. Oh, and they are not allowed ibuprofen for 2 weeks before the surgery and a few days afterwards, which really complicates things if they do have a fever during that time. Right now the only way we're getting through any fevers that come along is by alternating Tylenol and Advil/Motrin. If we have to cut out the Advil/Motrin, it's going to be tricky.

So, the ENT doctor figures it will be about 2 months until their surgery. Anyone want to come and visit for a week or two in about 2 months time? I may be needing a vacation around that time. :-)

Finally, I'm noticing a distinct lack of recipes provided in the comments to my previous blog entry. Thanks, M, for the only suggestion we've received. Come on everyone else... surely you have a non-wheat, non-dairy, egg-, tomato- and cranberry-free recipe to share.

K...