... the Starbucks baristas at the Children's Hospital location, that is. Which is basically another way of saying that we've had a few doctor's visits since my last post (and, of course, each visit to Children's includes a visit to Starbucks for Charlotta's hot chocolate and Mom's Earl Grey Tea Latte.)
On August 2, we had a check up appointment with Dr Reilly, Charlotta's back surgeon. When we were talking to Charlotta before the appointment, we said "whatever you say, don't tell Dr Reilly that you were on the slip'n'slide!" (she was just really sitting on the slide, not slipping, so not really that bad for her back). Well, we get into the exam room with Dr Reilly and the first thing she blurts out is, "We've got bunkbeds now." So, naturally, we had to explain that Charlotta only slept on the bottom and her sister slept on the top. That seemed to appease him, but he went on to say that we really should be letting her spine heal and not do any activities that might stress or strain her back. Good thing we didn't mention her bike riding, swinging or playing basketball :-O.
Overall, the doctor was quite happy with her progress 10 weeks after surgery, and just wanted to keep an eye on her lower back (which was not operated on) to make sure her lower spine didn't curve or twist.
Then, on August 9, we went back to the hospital to have the Vagus Nerve Stimulator (VNS) implanted by Dr Singhal, our neurosurgeon (yes, we have one of those too!). The surgery was planned to last about 2 hours, and we were scheduled to go home at the end of the day.
It was pretty uneventful, but about an hour and a half into Charlotta's surgery, as I was sitting in the daycare surgery waiting room reading my book, I thought I overheard one of the nurses say something like, "Dr Singhal's doing CPR now." The second I heard those words the blood instantly drained from my face and my stomach went into a knot. Dr Singhal? CPR? Charlotta? I just sat there, looking at the nurses station, hoping to hear some other detail or something that would reassure me that it wasn't Charlotta that needed CPR. Despite straining my ears, I didn't hear anything else, and couldn't bring myself to go up to the nurse and ask if I had overheard correctly. Instead, I sat there for about 20 minutes imagining the worst. Finally, one of the neurology nurses came out and told me that everything went just fine and that Dr Singhal was finishing up the surgery now. Phew, I must have heard wrong...
We came home around dinner time, and Charlotta had a little something to eat and went to bed. The next day, she was practically back to her normal self. What a trooper! She has two incisions: one under her arm where the VNS device was implanted and the other at the side of her neck where the electrical lead was attached to her Vagus nerve. Both of them have dissolve-able stitches covered with steri-strips -- at least we won't have another trip back to get the staples out!
We do go back to the hospital on August 24 to get the device turned on. They don't turn it on right after surgery in order to give the body a chance to get used to all the new hardware. When the device is turned on, it will be at a very low setting. We'll then go back every two weeks or so to have the settings increased. It should take about 2-3 months to have the settings running at a therapeutic level.
We're so excited to see how this will affect Charlotta and her seizures!
Saturday, August 13, 2011
Sunday, July 24, 2011
Doing Well & Surgery #2
Charlotta continues to amaze us with her recovery. In the last few weeks, she's been swimming, playing basketball, riding her bike, and more. There's not too much she can't do, and a few things she's not supposed to do (contact sports, amusement rides). On August 2, we go back to her surgeon for a check up. I think he will be very pleased with her progress.
It's a good thing she's recovered so well from the back surgery, because now we have another (minor) surgery on the horizon. We had an appointment with Charlotta's neurologist at the beginning of July, and at that time we decided that we wanted to go ahead with the Vagal Nerve Stimulator (VNS). As I've mentioned before, this is a small device (about the size of a key fob) that is implanted under her armpit, and is wired to the vagal nerve which runs up the side of her neck into her brain. The VNS gives an electrical charge to the vagal at certain intervals (the level of the charge and the time between the intervals can be adjusted remotely by the nurse). This consistent impulse to the brain can reduce the number and intensity of seizures, and can also have the added effect of helping the child be more alert and engaged overall.
Luckily, the nurse was able to schedule our VNS surgery in soon: August 9. It's just day surgery and will take about 1-2 hours (piece of cake!), and Charlotta will come home that night. Once the device is implanted, we go back to the hospital about 2 weeks later for it to be turned on. After that, we'll have regular visits back to the hospital as they "ramp up" the intensity and frequency of the impulses. It should take about 2 to 3 months to have the VNS up to the appropriate strength for Charlotta, and after that there is always room for tweaking.
Steve and I are really excited about this device and what it might mean in terms of reducing her seizures as well as some of the "static" that seems to be going on in her brain. Cross your fingers and wish us luck that it all goes well!
 |
| Hands up if you're an Olympic superstar! (at the Sliding Centre in Whistler, where we went for a short holiday). |
It's a good thing she's recovered so well from the back surgery, because now we have another (minor) surgery on the horizon. We had an appointment with Charlotta's neurologist at the beginning of July, and at that time we decided that we wanted to go ahead with the Vagal Nerve Stimulator (VNS). As I've mentioned before, this is a small device (about the size of a key fob) that is implanted under her armpit, and is wired to the vagal nerve which runs up the side of her neck into her brain. The VNS gives an electrical charge to the vagal at certain intervals (the level of the charge and the time between the intervals can be adjusted remotely by the nurse). This consistent impulse to the brain can reduce the number and intensity of seizures, and can also have the added effect of helping the child be more alert and engaged overall.
Luckily, the nurse was able to schedule our VNS surgery in soon: August 9. It's just day surgery and will take about 1-2 hours (piece of cake!), and Charlotta will come home that night. Once the device is implanted, we go back to the hospital about 2 weeks later for it to be turned on. After that, we'll have regular visits back to the hospital as they "ramp up" the intensity and frequency of the impulses. It should take about 2 to 3 months to have the VNS up to the appropriate strength for Charlotta, and after that there is always room for tweaking.
Steve and I are really excited about this device and what it might mean in terms of reducing her seizures as well as some of the "static" that seems to be going on in her brain. Cross your fingers and wish us luck that it all goes well!
Sunday, July 3, 2011
Back to Normal
This weekend was the first time it really felt like summer -- the sun was out, the temperature was above 20 degrees C (!) and we went to the beach. While Steve and Jack waxed up the skim board and took it for a skoot on some of the tidal puddles, Charlotta dug in the sand and Ashley did her best mermaid impression.
While I did help Charlotta over some of the rocks in order to get to the sandy beach, she was pretty independent once we got down there and was getting up and down from the sand by herself. Almost back to normal! We actually have our first appointment with the physiotherapist this coming Tuesday, so I'd like to get her opinion on Charlotta's posture and what we can do to help her develop better posture after surgery and not fall into bad slouching habits. At the moment Charlotta's shoulders are at different heights, and I think with some therapy we can get her to hold her shoulders straight and square.
Ashley left today with her Oma for a week-long trip to Thetis Island (off of Chemainus on Vancouver Island). They are attending a camp complete with bunk houses, a dining hall, sandy beach and fun activities. Here at home, Charlotta and Jack will be going to a morning day camp at our local church. Steve's home on holidays this week (but working on painting the house), but I'm the lone one who has to work (cue the violins... ). I am off on holidays next week though!
 |
| The first of many beach days at White Rock beach. |
 |
| Mermaid Ashley |
 |
| I'm happy to report that no chiropractor appointments were made as a result of this activity. |
While I did help Charlotta over some of the rocks in order to get to the sandy beach, she was pretty independent once we got down there and was getting up and down from the sand by herself. Almost back to normal! We actually have our first appointment with the physiotherapist this coming Tuesday, so I'd like to get her opinion on Charlotta's posture and what we can do to help her develop better posture after surgery and not fall into bad slouching habits. At the moment Charlotta's shoulders are at different heights, and I think with some therapy we can get her to hold her shoulders straight and square.
Ashley left today with her Oma for a week-long trip to Thetis Island (off of Chemainus on Vancouver Island). They are attending a camp complete with bunk houses, a dining hall, sandy beach and fun activities. Here at home, Charlotta and Jack will be going to a morning day camp at our local church. Steve's home on holidays this week (but working on painting the house), but I'm the lone one who has to work (cue the violins... ). I am off on holidays next week though!
Friday, June 24, 2011
TGIF
Well, it's Friday evening and we made it through the week. Whew!
I went back to work on Monday (had to deal with 387 emails in my Inbox, thank you very much) and Charlotta was back at school this week. For most of the days, she went to class in the morning and came home around lunchtime and took a nap in the afternoon. She is slowly building up her stamina (and her chest/upper stomach problems have also cleared up). Today, she was at school all day. She was definitely fading by the time I picked her up, but nowhere in our wildest thoughts did we think she should be back at school just three weeks after her surgery. Kids are truly resilient and Charlotta, in my opinion, is truly remarkable.
Randy, Julie and Anna.
Isn't Anna a cutie? (... and isn't Charlotta standing up straight?)
Ashley's hamming it up with Anna.
Jack and Uncle Randy in their matching "Dragon" t-shirts from China.
Saturday, June 18, 2011
Back to School.. and Back to the Doctor
On Friday, Charlotta went back to school for the morning. Her classroom teacher and other teachers in the school were all happy to see her, as were her classmates.
"You're so much taller."
"Wow, your back is so straight."
"We're so glad to have you back, Charlotta."
She just stood there grinning as the comments swirled about her, while I was close to shedding a few tears of joy.
Throughout this whole experience, we have received so much support from friends, family, co-workers and our community, including the school, and parents and teachers at school. Even parents and teachers at Jack's preschool have heard about Charlotta's situation and have helped us out. We are so touched and appreciative of all the support that's been shown us over the last few weeks. Thank you!
So back to school: Charlotta made it through the morning, doing most of her usual activities, plus a Father's Day craft. All of the action -- in comparison to the last sedentary two weeks of her life -- really tired her out. We picked her up at lunchtime, fed her at home and then she took a two-hour nap.
Earlier this week, we encountered an unforeseen complication of her operation. For about three mornings in a row, Charlotta complained of having a sore upper stomach (just below her sternum) right after getting up. She's not one to complain, but we could see that this really hurt her. It would last for about five minutes as she grimaced in pain and tried to breathe through it. Then it was gone and she was fine for the rest of the day. In my uneducated opinion, I thought that either she had pulled a stomach muscle or that she had an ulcer from all the medication she had been on lately.
On Thursday, I took her to our local GP to get a professional opinion. He was aware of her spine surgery and said that prior to surgery, the organs in her upper body were used to be squished or maybe had not even grown in length because her upper chest was so compacted due to her curved spine. Now, all of a sudden, with her spine straightened out, her esophagus is stretched and when she's asleep that may cause her stomach and the section of the esophagus that joins the stomach to slide up into the chest through an opening called the hiatus. When she wakes up and sits upright, it may slide back down again through the hiatus and that's the pain she is feeling.
He said that her body would adapt and that this was probably just a passing discomfort. Still, he prescribed some anti-acid medication that should make her more comfortable. Last night, we also raised the top end of her bed so that she's sleeping on a slight angle. It seemed to have worked because she didn't complain of a sore stomach this morning.
It does make you think about all the other parts of her body, besides her spine, that have had to adjust since the surgery.
"You're so much taller."
"Wow, your back is so straight."
"We're so glad to have you back, Charlotta."
She just stood there grinning as the comments swirled about her, while I was close to shedding a few tears of joy.
Throughout this whole experience, we have received so much support from friends, family, co-workers and our community, including the school, and parents and teachers at school. Even parents and teachers at Jack's preschool have heard about Charlotta's situation and have helped us out. We are so touched and appreciative of all the support that's been shown us over the last few weeks. Thank you!
So back to school: Charlotta made it through the morning, doing most of her usual activities, plus a Father's Day craft. All of the action -- in comparison to the last sedentary two weeks of her life -- really tired her out. We picked her up at lunchtime, fed her at home and then she took a two-hour nap.
Earlier this week, we encountered an unforeseen complication of her operation. For about three mornings in a row, Charlotta complained of having a sore upper stomach (just below her sternum) right after getting up. She's not one to complain, but we could see that this really hurt her. It would last for about five minutes as she grimaced in pain and tried to breathe through it. Then it was gone and she was fine for the rest of the day. In my uneducated opinion, I thought that either she had pulled a stomach muscle or that she had an ulcer from all the medication she had been on lately.
On Thursday, I took her to our local GP to get a professional opinion. He was aware of her spine surgery and said that prior to surgery, the organs in her upper body were used to be squished or maybe had not even grown in length because her upper chest was so compacted due to her curved spine. Now, all of a sudden, with her spine straightened out, her esophagus is stretched and when she's asleep that may cause her stomach and the section of the esophagus that joins the stomach to slide up into the chest through an opening called the hiatus. When she wakes up and sits upright, it may slide back down again through the hiatus and that's the pain she is feeling.
He said that her body would adapt and that this was probably just a passing discomfort. Still, he prescribed some anti-acid medication that should make her more comfortable. Last night, we also raised the top end of her bed so that she's sleeping on a slight angle. It seemed to have worked because she didn't complain of a sore stomach this morning.
It does make you think about all the other parts of her body, besides her spine, that have had to adjust since the surgery.
Tuesday, June 14, 2011
Yesterday was "S" Day
... and by "S" day, I don't mean Stanley Cup day -- that happens on Wednesday, all you faithful Canucks fans. :-)
No, yesterday was Staple day. We had a 1pm appointment at Children's Hospital to get all of Charlotta's staples removed. There were about 60-70 staples closing the incision down her back, and 3 sets of about 10 staples each on her side, under her arm. I'm not going to sugar-coat the experience and say Charlotta was good with it. She cried. A lot. But I'm sure it was a painful. For her part, the nurse who removed the staples was experienced -- calm and efficient -- and the whole process only took about 1/2 hour.
The good news is that there is no infection in any of Charlotta's incisions. They are a bit scabby (that's as graphic as I'm going to get) and will heal up on their own.
She's now able to have a shower again, which is good news on the hair-washing scene. Yesterday, before we went for our appointment, I actually tried to wash her hair. I had a hair-salon style set up at our downstairs bathroom sink. The only problem was that I totally goofed with the plastic garbage bag/cape. Instead of diverting the water back into the sink, the way I had things set up, the water ran directly down Charlotta's back, soaking her bandage, underwear, pants, chair, etc. Oops. Glad that was the first and last time I had to do that.
No, yesterday was Staple day. We had a 1pm appointment at Children's Hospital to get all of Charlotta's staples removed. There were about 60-70 staples closing the incision down her back, and 3 sets of about 10 staples each on her side, under her arm. I'm not going to sugar-coat the experience and say Charlotta was good with it. She cried. A lot. But I'm sure it was a painful. For her part, the nurse who removed the staples was experienced -- calm and efficient -- and the whole process only took about 1/2 hour.
The good news is that there is no infection in any of Charlotta's incisions. They are a bit scabby (that's as graphic as I'm going to get) and will heal up on their own.
She's now able to have a shower again, which is good news on the hair-washing scene. Yesterday, before we went for our appointment, I actually tried to wash her hair. I had a hair-salon style set up at our downstairs bathroom sink. The only problem was that I totally goofed with the plastic garbage bag/cape. Instead of diverting the water back into the sink, the way I had things set up, the water ran directly down Charlotta's back, soaking her bandage, underwear, pants, chair, etc. Oops. Glad that was the first and last time I had to do that.
Thursday, June 9, 2011
Eyes in the Back of My Head... Please
OK, we've been home less than 48 hours and my worst fear has already come to pass: Charlotta went down the stairs by herself. This afternoon I had left Charlotta laying on the sofa in front of the TV, and went to help Ashley with something. A few minutes later, I go back to check on Charlotta and she's gone. Vanished. All that's left is an indentation in the sofa cushion and a cast-aside blanket. I frantically ask the other kids, "Where's Charlotta?" Jack pipes up casually, "Oh, she's downstairs in the mud room waiting for you to help her with her shoes." Downstairs!!! Yikes.
The reason for my stair paranoia is two-fold. The first is that we don't have a handrail on the lower flight of stairs that go down to the rec room and mud room, so there's nothing for Charlotta to grab on to for balance. The other reason is that her balance isn't all that great right now. The physio explained to me that if you or I were to stumble, we'd probably bend forward a bit and catch ourselves but with Charlotta, the rods in her back don't allow her to bend or curve, so if she trips and starts falling forward, her body can't react the same way as it instinctively used to and I'm worried she would fall flat on her face and injure herself.
To be honest, at the moment I would like best just to roll her up in bubble wrap and strap her to the sofa, but I know that's not possible. She wants to play and have fun like the other kids. This afternoon she wanted to play basketball and also asked if she could go on the swing set. She got a big NO from me on both accounts, but I know I won't be able to distract her all the time. And, as this afternoon's stairs incident clearly showed, I can't keep my eyes on her 24/7. Somehow I need to find a balance between keeping her safe and becoming an over-protective, safety-obsessed mother hen.
The reason for my stair paranoia is two-fold. The first is that we don't have a handrail on the lower flight of stairs that go down to the rec room and mud room, so there's nothing for Charlotta to grab on to for balance. The other reason is that her balance isn't all that great right now. The physio explained to me that if you or I were to stumble, we'd probably bend forward a bit and catch ourselves but with Charlotta, the rods in her back don't allow her to bend or curve, so if she trips and starts falling forward, her body can't react the same way as it instinctively used to and I'm worried she would fall flat on her face and injure herself.
To be honest, at the moment I would like best just to roll her up in bubble wrap and strap her to the sofa, but I know that's not possible. She wants to play and have fun like the other kids. This afternoon she wanted to play basketball and also asked if she could go on the swing set. She got a big NO from me on both accounts, but I know I won't be able to distract her all the time. And, as this afternoon's stairs incident clearly showed, I can't keep my eyes on her 24/7. Somehow I need to find a balance between keeping her safe and becoming an over-protective, safety-obsessed mother hen.
Subscribe to:
Posts (Atom)