Tag Archives: hospital

Frustrated

9 Jun

Jade’s got an MRI and lumbar puncture on the menu today.  Yesterday we were told she’d have to fast for 6 hours before the MRI because of the anesthetic.  And we wouldn’t know until 8:00 a.m. when she might be going for the MRI.

A student nurse came in around then and said she thought maybe Jade would be going in around 2:00 or 2:30.  I asked if we could get confirmation because if the time was 2:30, we had a half-hour window to give her some food.  Then we were told they wanted to do a fasting glucose test, as well, which required 12 hours of fasting.  First we’d heard of it.

Jade hasn’t eaten since 6:00 last night, unless you count the bottle of milk she had at about 7:00.  I was horrified that she might not get to eat all day.  I tried pushing for more information, and suddenly, we were heading for the MRI room immediately.  Yes!  A chance opening!

Jade was all ready to go in when we got the bad news.  Because I had given Jade less than a teaspoon of jam at 7:00 a.m. (how she always takes her Clobazam), we’d have to delay the MRI until the afternoon.  If a slot became available.  We still don’t know if she’s getting to have the MRI today, and Jade hasn’t been allowed to eat or drink a thing, not even water.  My heart broke when she sat down at a play table and asked for breakfast.

And now she keeps asking for her bottle.

I know she won’t die of starvation, but I still feel terrible.  And because her seizures usually come on when she’s tired, I’m worried that the fasting will exacerbate things.

And I feel this is all completely my fault because of that stupid drop of jam she had.  If I had thought of finding a different way to give her her meds, she’d be done the MRI and in the recovery room by now. Now that’s a bitter pill to swallow.

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Fly-by post

7 Jun

I bawled my eyes out when I was writing to my godparents last night.  Then I bawled my eyes out this morning when Marian called and told me it was much too difficult for me to stay home and that I ought to go to Vancouver to be with Michael and Jade and that she and Jim would pay for me to get down there.  So I am, in about 8 hours from now.

In the meantime, my godparents generously swooped in and brought food supplies to Michael and Jade (plus took them out of the hospital to a nice restaurant) and a friend in Ottawa phoned her parents in Vancouver, who also brought food, and another friend in Toronto somehow made arrangements via the Internet to have some food delivered to Michael and Jade on Monday.  On my end, neighbours have agreed to look after the pets, drive me to the airport, keep me company, feed me… Unbelievable!  I’m overwhelmed with gratitude.

Oh, and I just noticed that Michael made a third blog post today, and he tells it much better than I do.  While you’re at it, he talks about the tests Jade will have to have this week, and how she’s adapted to hospital life.

It’s after midnight and I need sleep.  I’ll update again when I can.

E-mail to my godparents

6 Jun
Hi again K.C. and Janet,
 
Well, it looks like Michael and Jade will be staying in Vancouver until the middle of next week for more testing.  They’ve now been admitted to the hospital to make the testing more convenient.  Jade has to have another spinal tap and more blood tests, chromosomal testing, an MRI, some more EEGs, and goodness knows what else.  The neurologist thinks she’s having “myoclonic seizures” and wants to switch Jade to a different kind of medication (Michael thinks she said “Valproic acid“) that is more effective for this type of seizure.  But it has some scary potential side effects. 
Apparently the EEG showed that Jade is sometimes having seizure activity in her brain without having any other symptoms that we can see; the neurologist is concerned about these seizures because if they continue, they could slow Jade’s development.  (And it makes me wonder… how long have they been happening?)  Michael suspects the doctor’s also concerned that Jade’s condition could deteriorate, but she’s not saying so.  Instead of feeling better, I feel overwhelmed by all the information, and scared about what it might all mean.
 
Michael is frustrated about being in the big hospital; he’s only spent a day there and he says he already feels “lost in the system”.  We had such great, personal care here in Whitehorse, so I think that makes it even harder to be an anonymous patient in a big, unfeeling hospital.
 
They didn’t finish with the neurologist until almost 6:00 p.m. and then they got checked into the hospital.  Michael asked over and over again for food to be sent to them, but the helpful response he got to his questions of,  “Is it coming?” was, “we hope so.”  He finally went to the cafeteria 10 minutes before they were going to close and found there was only wilted salad left, so Jade had a couple of pieces of chicken and a pile of croutons for her supper.  Then he got her into the crib in her clothes because all the luggage was still back at Ronald McDonald House.  After she fell asleep, he rushed back there to get their stuff, plus do the “checking out chores” like washing the sheets and disinfecting everything, part of the rules for staying there.
 
I know it’s a long way from Surrey, and I don’t think anyone knows the schedule for all the tests they’re planning to do, but Michael said he would phone you.  If you can get down to see them, would you please bring them some food that they can keep in the room?  I hate to ask for favours, but I know it would really help him out a lot.  I don’t think he’ll be able to get out to do any shopping, and he gets hungry without snacks, plus he might be running out of snacks for Jade.  I don’t know if he has access to a fridge or not, but I hope so because we always kept milk around for Jade. 
I really wish I could be there to help — one of us could have stayed with Jade while she fell asleep while the other went to get the luggage and do the house chores.  I feel so helpless here.
 
They’re at the BC Children’s Hospital but I’m not sure where because they’re probably moving rooms tomorrow.  I wouldn’t try phoning before 9:00 a.m., just in case they somehow manage to sleep in.  Michael could sure use some rest.
 
I hope you get to see them, and if you do, please give both of them a hug for me.
 
Lots of love,
Fawn