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
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5 Responses to “E-mail to my godparents”

  1. Sue June 7, 2008 at 5:40 am #

    Big hugs to all of you! XOXO I got up this morning, and right after my coffee, I had to check your blog for news. I had checked last night before I went to bed, but we are 3 hours behind you.

    I know from experience too that the waiting is brutal, the information overwhelming, and not being there first-hand would make it so much more so.

    I found that at least when you get a diagnosis and prognosis, you can put your energy into a) coming to terms with it and getting a handle on it mentally, b) researching it and c) getting on with what needs to be done for it.

    Please know that the three of you have been in my thoughts. Wished I lived closer so I could make some meals/snacks for them and watch Jade so Michael could get outdoors, instead of sitting here on my butt watching for updates on your blog.

    Did you know that Michael used to show up at our front door in the middle of winter, usually on a very cold day, in shorts and hiking boots, wanting to know if Garrett wanted to go hiking or winter camping? The first couple of times my thoughts were “you’re kidding, right”, but soon began to expect his appearance. I hope he is able to get out of the hospital for some fresh air (well, on reflection, not sure the air in Vancouver is “fresh” 🙂 ) while some of these tests are being done.

    Know that many people are behind you…and feel the positive thoughts being sent your way. Sending virtual hugs to the 3 of you. Will be checking your blog regularly for updates. XOXO

  2. MommyTime June 7, 2008 at 10:50 am #

    Oh, dear, I wish I could help you somehow. In my bloggy network, two of my closest friends live in Vancouver — perhaps there is something they could do to help? I’ll see what I can do… I’m thinking of you all the time and hoping the tests turn up information that leads to much better control of Jade’s seizures.

  3. Stacie June 7, 2008 at 10:53 am #

    I hear you about our wonderful hospital. When I was in there, and they finally told me I could eat (after 30-some hrs of no food), the cafeteria was closed. It was late and I wasn’t going to call anyone to bring me food (not a huge appetite at the time anyways…) but the AWESOME nurses ran around to find stuff, and ended up making me toast and rooting through the fridge for something to tide me over!! Even at that they were apologizing for not having more. They go WAY out of their way to help. I came out of there just loving all the nurses.

    Anyways, might miss you at Alsek – it’s already noon and I’m just getting my breakfast! Good luck, I bet it’ll be a blast, even though I know you want to get back home to await news from Michael. Keeping all 3 of you in my thoughts!!! 🙂

  4. tibchar12 June 7, 2008 at 12:53 pm #

    I am so lucky to have my health I wish I could help some one, after reading your blog this morning I thought maybe a message of hope from down-under would help. I live in South Australia and have been blessed with two health married daughters and wonderful son-in-laws. Now since my daughters married I am lucky to be blessed with two small Chihuahua cross breed dogs that give me so much life and love to all our family. We all send you our thoughts and prayers from down-under that all goes well.

  5. Rachelle Tyrrell June 8, 2008 at 2:25 pm #

    My parents would love to help out in any way possible! Is there any way I can get them to contact you while you’re down there?

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