Settling In

Yesterday, around noon, we got transferred up to a room on the 3rd floor, as predicted. The room allocation gods were smiling down on us, as we received a private room with -- get this -- a window and a real cot for me to sleep on (as opposed to a fold-out chair).

Not exactly the Four Seasons, but it's a good place for now.

Charlotta was pretty groggy for most of yesterday. She was able to eat and drink a tiny little bit, but spent most of the day dozing in and out of sleep. All of this is very typical after a surgery of her type, and the doctor is very happy with her progress.

Steve brought Jack and Ashley down for a visit last night around dinner time. As said, Charlotta was pretty sleepy, so she didn't get to interact with them very much, but it seemed to put their worries to ease about their sister. I think once they could visualize where she was and see that she was tired, but otherwise OK, it gave them some comfort.

Today's agenda includes a visit from my Mom. (I asked her to bring me some hand cream because I seem to be washing my hands 57 times a day with antibacterial soap -- hospitals always make me want to wash my hands). I hope I'll also get a chance to go outside for a walk when my Mom's here to watch Charlotta.

We're also scheduled for a chest x-ray sometime today. The surgeon had to deflate Charlotta's right lung during the operation because he removed a few of her disks through an incision under her arm. She currently has a chest tube in to drain away any of the extra fluid that collects from that part of the operation. Today's x-ray will tell us if her lung is back to normal function and the chest tube can come out.

I've also just had the physiotherapist pop into our room. Charlotta is sleeping right now, but he's going to come back later and see if we can get her to sit up. This ought to be interesting... He said it's best if kids start moving as soon as they can after this type of operation -- which is a far cry from the way things used to be a few decades ago when kids would be in body casts for months after spine operations. As the surgeon explained to us, the "cast" is now inside her body in the form of the metal rods, so she is able to get up and around a lot quicker. Thank goodness for medical advancements -- three months in a full body cast does not sound fun!

The Surgery Went Extremely Well

"The surgery went extremely well."

Those were the wonderful words out of Dr Reilly's mouth when we finally saw him at 7pm last night. He said that Charlotta was very stable throughout the surgery and didn't lose a lot of blood. He was also very happy with how much he was able to correct her curvature. She had a 90 degree curve going into the operation (see x-rays), and he had initially hoped to straighten her to a 20 degree curve, but instead was able to get her back to 15 degree curve. We were very happy to hear that.

I think, though, the part that I was most relieved about was that her spinal cord was OK. This had been one of the risks of the surgery that I had been worrying about and dwelling on. During the operation, they actually have two technicians who monitor her spinal cord the whole time. How they do this is that they hook electrodes up to her scalp (like an EEG) to monitor her brain waves, and then throughout the operation they stimulate her feet and make sure that her brain registers the stimulation. In Charlotta's case, her brain waves are quite abnormal because of her tendency for seizures, so the techs had their work cut out for them, figuring out what was "normal" for Charlotta. Dr Reilly actually said that they would have been finished in the OR an hour earlier, but the technicians had to take some extra time during the surgery to test and adjust her EEG monitoring and look back on old EEG reports to compare them. In the end, all was good.

Last night, we were able to visit with Charlotta from about 7-10pm while she was in recovery in the ICU. They keep her there overnight to monitor her blood pressure, oxygen levels and all those other vital signs that can be compromised when you have an operation and are under anesthesia for 12 hours. She was pretty groggy and only opened her eyes a few times for us. She is also on morphine for the pain, and will be for the next few days, so hopefully she's not too uncomfortable.

If everything goes well and the Drs are happy with her recovery, we should be moved to a room on the upstairs ward later today (that is, if a room is available). Steve and I went home to sleep last night, but from today onward – when Charlotta’s in her room – I will be staying with her on those lovely pull-out chairs (should I make my chiropractor appointment already???)

Steve will be bringing Jack and Ashley down for a visit this afternoon, so that's sure to cheer up Charlotta.

Today's THE Day

Well, we made it to Children's this morning -- no calls over the weekend. We had to be here at 6:30 am on Monday morning. It's now 9am and Charlotta went into the operating room about an hour ago.

She was a lot more anxious about the surgery than I had expected. Over the weekend and even early this morning she was quite nonchalant and didn't mention it, although in our family we had been talking about it in general terms. All that changed after we got to the hospital this morning and Charlotta got changed into her blue hospital gown. That's when the anxious wailing began: "I want to go home. When can we go home? Mom will you take me home? Is it time to go home yet?" ... all accompanied by huge sobs. Nothing I could do or say would calm her down.

The anesthetist finally gave her an oral sedative... Which sort of worked. I was able to accompany her as she was wheeled into the operating room at just after 8am (I had to wear a scrub gown, hair cap and little booties over my shoes). Quite soon after we arrived in the OR, they started an IV in Charlotta's hand and then administered the medicine to make her go to sleep. It was only then that she finally settled down.

Now I'm sitting in the coffee shop and prepared for the long wait ahead. When I spoke with the surgeon this morning, he said he'd probably be finished around 8pm, but that I could check with the nurses station for an update after lunch.

Still on Track

It looks like we're still on track for Charlotta's surgery for Monday, May 30. I supposed I shouldn't count my chickens before we're actually at the hospital -- because any number of things could come up -- but I'm re-psyching myself up for Monday.

It's odd, actually, that I haven't thought much about the surgery since we got the postponement notice. I guess the smart part of my brain (wherever that may be!) realized that it wasn't productive to worry and fret about something that was out of my control. I'll save all my worrying for Sunday night.

In the meantime, we were able to have Charlotta's birthday at home, as well as sneak in a few amusement rides at the Cloverdale Rodeo this past weekend. We read in the pre-op information that after the surgery Charlotta would have to wait a year before being able to go on rides again (the jarring motion being not great for her back). Here's a pic of the kids on the Monster Truck Mania.

Best Laid Plans...

So for the last few weeks, we've been preparing for Charlotta's May 16 surgery date. I'd made plans for co-workers to take over my projects at work in order that I could take three weeks off while she's in the hospital and recovering at home. After those three weeks, I was going to go to Toronto for a conference at which I'm giving a presentation. Steve had made plans to shift his work schedule as well while Charlotta was in the hospital. We've lined up grandparents to take care of Jack & Ashley, and I had prepared Charlotta's school for her absence.

This past Wednesday we had an all-day appointment at Children's Hospital to meet with the surgeon, get x-rays and bloodwork done, meet the physiotherapist, etc. The meeting with the surgeon was both informative and scary at the same time. It turns out Charlotta's surgery will be approximately 12 hours long, and the surgeon will make an incision in her side (under her arm) to perform the first part of the surgery, and then will make the main incision down her back to perform the major part of the surgery which involves attaching the rods to her vertebrae and fusing her spine.

Everything was in place -- we were prepared physically and mentally. Then, on Friday afternoon (did I mention it was Friday, the 13th?), we got the phone call we were dreading: Charlotta's surgery had to be postponed due to an emergency. We were going to be rescheduled for two weeks later, on May 30. Sigh...

Time to re-arrange our plans. I feel especially bad about having to bow out of the conference in Toronto. I'm scheduled to give a presentation with a co-worker, and now she'll have to give the presentation on her own. I'm sure she'll understand, but I feel like I've let her down.

The one good thing about having the surgery bumped is that Charlotta will now be able to celebrate her birthday at home, on May 19. Happy 11th Birthday, Sweetie!

Surgery Update

Well, we were hoping for a surgery date for Charlotta's scoliosis in April, and we got one in May. Not too bad for the Canadian medical system. Her operation will take place on Monday, May 16. Less than two weeks away!

I have to admit that I'm more anxious than relieved. It will be major surgery, and I'm worried about how she will get through the operation, as well as the whole recovery process. I'm also worried about her rehabilitation process, what her mobility will be and what her physical limitations will be. In a nutshell, I'm just plain worried.

I have to believe that everything will turn out for the best, and in the long run Charlotta will be better off having had the surgery. We have a pre-op meeting with the Drs next week, and I'm hoping to have some questions answered then. I have also spoken with another Mom whose daughter went through the same surgery last fall, and got quite a bit of information from her as well.

Another really neat thing happened to me last week. I was walking down our street, when I stopped to say 'hi' to the pastor's wife who lives down the street. We chatted for a few minutes and she asked how the kids were doing, and I said 'fine.' And then she asked again how Charlotta in particular was doing (like she knew what was on my mind!). I told her about the surgery and that I was a little worried and then, right there in the middle of the street, she said a prayer for Charlotta that everything would go well. I was so touched! Everything is going to be OK.

Phew -- I'm glad that's over

I haven't been able to sleep in the last couple of days (or nights, actually) and have had that nervous feeling in my stomach as well. Stressed. Worried. Anxious. You name it, that's what I was feeling. And all because a nurse from the health department was coming to ask me a few questions about Charlotta.

About four years ago I had applied for a government program that provides funding for special needs kids to receive certain therapies such as speech therapy (which costs like $150/hour). Anyhow, in order to qualify for the funding, the child has to meet certain requirements and be dependent on an adult for basic needs such as dressing, washing, eating. A nurse comes out for a home visit to assess the child. Well, four years ago a nurse came out to assess Charlotta but we ended up being declined for the services. She was too independent, they said.

I was so hurt and shocked and disappointed that we were declined. I was mad, too. Not only did I have to justify Charlotta's needs to a person who didn't even know her, but they had no right to decline her because she truly did need help with all of those things. I was too devastated to even appeal the decision.

Fast forward four years. Last December we had an appointment with a wonderful doctor of Charlotta's who is a developmental pediatrician. He mentioned something in passing about the program I described above, and I said to him that we had applied but were declined. He was very surprised by that and encouraged me to apply again. Then he left our examine room for a few minutes to get a copy of the application form and he filled in all of the parts that a doctor had to fill in. I mailed in the form in January --- with a knot in my stomach.

Last week, I received a call from the department that manages the program. The nurse on the phone asked a few questions. Her: "Has anything changed since last time you applied?" Me: "No, but that's the point. My daughter is almost 11 years old and still struggles with washing herself and getting dressed by herself."

So, a home visit was scheduled for this afternoon. I preparation for this, we put her to bed late last night and woke her up early this morning. I'm also ashamed to admit that I didn't give her her anti-seizure medication this morning. All this so that she would not be at her best.

I picked up Charlotta from school early, and dreaded every minute until the doorbell rang. The lady who came was nice enough, and went through the extensive questionnaire about Charlotta's abilities in all the areas of personal care. About an hour later, she said that the committee would meet to review the assessments in a few weeks, but from what I had told her and what she observed, she thought Charlotta would be accepted into the program. Hallelujah!

I was relieved, but also angry at myself that I had to go to such lengths to bring out the worst in Charlotta. She's such a great kid, but just needs some extra help with things. As the parent of a special needs child, you spend most of the time celebrating the small accomplishments and milestones that they achieve. Then, in order to satisfy a government bureaucrat, you need to focus on all the things they can't do and how much different they are from typical kids.

Phew, I'm glad that's over with. Now I need a glass of wine...