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.

While we've been focused on Charlotta's back surgery these past few weeks, another part of our family -- Steve's sister Julie and her husband Randy -- have had their own life-changing experience. After waiting for five years, they were finally notified that their adoption of a baby from China was taking place. At the end of May, they travelled to Beijing to welcome their new daughter Anna into their family. We're so very happy for them! Anna's 8 months old and a total sweetheart. Such a good-natured baby and very photogenic to boot. We've had a few visits with her, and her cousins just love to play with her.

 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.

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.

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.

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.

Home Sweet Home

Yesterday  afternoon we were discharged from the hospital and came home. Our surgeon came in to see Charlotta just after lunch and was quite happy with her mobility (walking and going up and down stairs), so he said Charlotta could go home, despite not having met the poop criteria. (Charlotta ended up going at home just after dinner.)

It is good to be at home, but part of me liked the controlled environment of the hospital. There, Charlotta was my only focus and I could keep an eye on her 100% of the time. Now that we're at home, I need to resume my multi-tasking mom role, and I'm worried that while I'm cooking/cleaning/helping the other kids, I can't give Charlotta all of my attention and I'm afraid that she may try to do something that is unsafe, like go down the stairs by herself.

Charlotta is happy to be home and spent about half of her day lying in bed and the other half propped up on the sofa. She's doing well, but is still quite tired. Aside from looking tired, she lost quite a bit of weight in the hospital and is looking kind of gaunt. Her appetite is pretty good, so I'm sure she will gain it back fairly soon.

For tonight, though, we're both going to enjoy sleeping in our own beds. Good night...

Waiting for "Number Two"

Charlotta's been doing great these last two days and her walking is really improving. The physio is coming back at 11 am this morning to help us try going up and down the stairs. This is an important skill to try before we go home, since we have two flights of stairs in our house.

The other "condition" that Charlotta has to meet before we are discharged is that she had to have a bowel movement. I think this is kind of funny -- that we can have this really complicated surgery with a lengthy rehabilitation period, but it all comes down to whether she poops or not before the doctor lets us go home. Apparently this "waiting for number two" scenario is quite common among kids who have surgery. All of the pain medication and the anesthesia they are given really blocks them up. And, to be honest, I would rather have the help of the nurses and their experience in this department to get Charlotta moving again, rather than deal with it at home on our own. Charlotta's been given a few different laxatives over the last 48 hours, so hopefully we'll get some action soon, and be able to go home today.

Other than that, we're just trying to cope with our bad hair days. Charlotta hasn't had a hair wash in over a week (she can't get her incision wet), so we're trying to mask her bad hair with a colourful hair band. And I'm wearing my trusty hat until the hospital volunteer comes later this morning and I can go for a shower.

Playing Barbies... again!

Lifting Charlotta's Spirits

This weekend was a turning point for Charlotta. In addition to getting stronger at walking, she has also come out of the medication-induced fog that she's been in since surgery. She is no longer getting any morphine and is only taking Tylenol for pain. She's talkative and awake most of the day -- it's good to have the old, chatterbox Charlotta back.

Since our stay here, we've received many great get-well gifts from family, friends, co-workers, classmates and teachers. Charlotta has been given some great balloon bouquets, but the one that arrived today from my brother and his family in Ottawa takes the cake. Each balloon was 3-to-4 feet in length, and there were six of them all together (a horse, a turtle, a unicorn, a rainbow, a butterfly and a dolphin). Looking into Charlotta's room from the hallway, you could barely see her bed for all the balloons in the way.


The balloons also had a therapeutic value. They arrived just as Charlotta had finished up a walk with the physiotherapist this afternoon. The physio had wanted her to walk a bit further, but she didn't want to do any more. Then, Steve and the physio had the idea to take the horse (Charlotta's favourite balloon) for a walk. The "led" the horse for a full lap around the ward. That balloon was just the encouragement she needed to go those extra few steps.

Jack and Ashley also got in on the balloon action, as Charlotta gave them each one of the big ones to take home -- the unicorn for Ashley, and the dolphin (named Flipper) for Jack.

One Small Step

Written Saturday evening:

OK, I leave Charlotta alone for the weekend with Steve and I miss all the exciting stuff! Today she not only took one small step, but many. With the help of the physiotherapist, Steve was able to get Charlotta up and walking this morning, and then again this afternoon. They both had to hold under her arms to help her with her balance, but she was able to walk about 15 feet from her room and back again. She's quite unsteady when walking because her left foot is always trying to step in front of her right foot. This is what her leg muscles remember from before her operation when she had to compensate for the unbalance in her back. She'll have to re-learn how to walk straight.

Steve also took Charlotta for a few longer rides in a wheelchair around the hospital. They went outside for a bit and then down to Starbucks for a hot chocolate (of course). Charlotta's cousins also came for a visit and they played with her in the hospital playroom. She was able to sit for 2 hours in the wheelchair, which is an accomplishment in itself since yesterday she could barely sit up and keep her balance by herself.

It also seems like the "spacey" affects of the medication are wearing off, as Charlotta is back to her own chatty self and was awake for most of the day. When I talked to Steve on the phone tonight around 9pm, he was saying to me, "I should get her to sleep soon. She's tired" and in the background I hear Charlotta say, "No, I'm not!"

Finally, I'm not sure if anyone has seen the Children's Miracle Weekend show on Global TV (it's on Saturday and Sunday). The telethon is raising funds for BC Children's Hospital. Those of you who have been there know that the hospital is truly an incredible place with so many talented doctors, nurses and therapists. We've spent our fair share of time there over the years, and always feel so fortunate and blessed to have such a great facility so close to home.

I was just watching the telethon tonight (as I'm typing this) and saw a short video of a girl named Sophie who had the exact same operation as Charlotta. She's doing very well now and the biggest outcome for her was that she no longer had pain in her back. Even though Charlotta didn't complain about the pain, I'm sure it was there and I'm glad to know that her back will feel better when she's fully recovered.

The Weekend Shift

Written Saturday morning:

Yesterday, Friday, was another busy day and a step further along the road to recovery. Charlotta's chest tube was taken out at 7am but the young doctors (they do start early), and we had another drain from the incision in her back removed as well.

The physiotherapist came by in the morning and we got Charlotta up and sitting in her chair for about 20 minutes. That pretty much wiped her out, and she slept for about three hours in the afternoon. I would have to say that I didn't expect her to be so wiped out from the surgery, but it's really taken a toll on her and she spends a lot of time sleeping and when she's awake, she's not really herself. She is still getting some morphine (orally now), so I think that's keeping her a little on the "spacey" side. She seems to be having a few more "absence" seizures, so I'm wondering if the anesthetic and all of the other meds she has been getting have messed up her seizure control a bit.

Steve came down to the hospital last night with Jack, Ashley and two boxes of pizza. We all ate pizza in the room and the kids (not Charlotta) had fun playing in the playroom that is just down the hall from Charlotta's hospital room. I took the kids home around 8pm, and Steve will be staying with Charlotta over the weekend. I'll go back down on Sunday afternoon and we'll switch out. It seems like Tuesday will now be the likely discharge date, depending on how Charlotta progresses with her mobility.

Speaking of mobility, I just spoke with Steve on the phone and he said that this morning the physio came by and they were able to get Charlotta up and walking -- with support on both sides -- in the hallway for about 15 feet. When she was walking she was leaning toward the side where her curve had been, which the physio said was natural as she had been compensating for the curve these past few years. Over time she will learn to re-adjust herself and walk straight again. I see lots of physio visits in our future!

In fact, I'm trying to line up a physio who is experienced in post-op patients to come and do home visits at our house starting next week when we're back from the hospital. Charlotta will need to re-learn how to do many everyday things -- such as putting on her shoes, or bending down to pick up something -- since she won't be able to bend the part of her back that was fused.

That's about it for now. Go Canucks Go!

What a Busy Day

It all began at 6:15 am this morning with a knock on our hospital room door. "Hello. Hello?" (I knew this wasn't our nurse as she just slips in quietly, checks what she needs to on Charlotta and slips out again). As I'm rubbing the sleep out of my eyes (and let's be honest, trying to remember what I'm wearing for pajamas and if they are decent), a young doctor walks into the room and introduces himself as the orthopedic resident. He gives me his name but in my fuzzy state I promptly forget it. He announces he's here to change the dressing on Charlotta's back. This ought to be interesting...

We turn on a few lights and go to rouse her. By this time, another young doctor has joined us. We roll Charlotta on her side, and the first doctor who is standing at her back begins picking at the 2-foot-long bandage that runs the length of her spine and covers the incision. Despite being stuck on with super-glue, the bandage comes off fairly easily (or maybe he's just very adept at removing it). I'm standing on the other side of the bed, facing Charlotta and trying to keep her lying on her side, but once the bandage is off I can't resist the urge to peek over to the other side and see her incision. I'm generally pretty squeamish about these kinds of things, but all-in-all it looked pretty good and was a neat row of 60+ staples. The new bandage went on and the doctors were gone. "Good morning, Mommy," mumbles Charlotta.

We had visits today from Charlotta's teachers, who brought an amazing bouquet of balloons along with a huge Get Well card from her class, and mini Get Well cards from the Kindergarten class that she helps out in. Steve's parents also came to visit, which allowed me to get outside for a bit and go for a walk in the rain (it felt good).

This morning and afternoon we had visits from the physiotherapists, whose goal it is to get Charlotta up and moving. This morning we sat her upright, with her feet dangling off of the edge of the bed for about 4-5 minutes. She looked kind of woozy and needed our help to stay upright. This afternoon we had a different (more ambitious) physio who not only had Charlotta sit up, but stand up and then shuffle a few steps to a chair and then sit in the chair for 10 minutes. She complained a bit, but did quite well, all things considered. We got her back in bed, and about 15 minutes later she threw up, and then she went to sleep. What a trooper!


She has actually spent most of the day sleeping. The doctor said this is normal, as the medication they used to sedate her during the operation is working its way through her system, and plus the morphine she is on can also make her feel tired, nauseous, woozy and just plain yucky. Tomorrow her chest tube comes out, so we will probably taper off the morphine after that.

Later on this afternoon, I got a great "before" and "after" look at Charlotta's spine. Her surgeon came in to check on her, and asked me if I wanted to see her before and after x-rays. Well, of course! As a fan of home reno shows, I love the dramatic "reveal."

Pretty cool, huh?

Before (left) and After (right)

Tomorrow, we've got more physio on the agenda, and they will take out her chest tube, which should make her feel much more comfortable.

Finally, I wanted to say a big thanks for all the good wishes, prayers, big hugs, positive vibes and casseroles you've all been sending our way. They are very much appreciated!

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!