SMA: Neuromuscular clinic (July 9)

Khloë’s first Neuromuscular Clinic appointment was July 9th. Clinic only runs on Wednesdays, every other week. Unfortunately, our visit was not as successful as we had hoped it would be. Most of the specialists were great, but one doctor kind of ruined the day for us.

On Tuesday, July 8th we met with Khloë’s pediatrician, Dr I. That appointment went fine as it was just a follow-up on how we were dealing with our daughter’s diagnosis. Dr I asked if she can continue to follow Khloë’s progress; we agreed to this request.

That same day we saw the surgeon who would be performing the G-tube surgery. Dr B was extremely hard to understand and I felt that there was a language barrier. I’m sure he’s a great doctor, but I didn’t feel comfortable with the consult. He doesn’t want to do the surgery while Khloë can still eat orally, but that contradicts what her neurologist said. Dr M originally told us that getting the G-tube proactively, before she is sick and has developed breathing problems, would be better for her, especially in regards to recovery. I think these two doctors need to have a discussion. Jordan and I want Khloë to have the surgery by the fall, at least.

On Wednesday, July 9th we walked back over to the hospital for our first visit to the Neuromuscular Clinic. It turned out to be a long, exhausting day. Khloë was very tired as she was up at 6:30 that morning; she refused to nap before the appointment and then as soon as we arrived I could tell she wanted to sleep. She needed a lot of attention to keep her from being really miserable, so it was hard for me to really concentrate on what the specialists were saying. I felt rushed and overwhelmed.

First we met Kellie, the dietician, who told us to start Khloë on one food at a time to check for allergies. I explained to her that we already give her mixed cereal and various fruits and veggies all within the same days and she hasn’t had any reactions. I’m not going to change the way we feed her because there are no food allergies in our families. I asked her to find out more information about dairy products, as I’ve read that SMA kids have a hard time digesting the fat molecules in dairy because it takes too much of their body’s energy.

The Occupational Therapist was still trying to find us a bath seat. She also found a neat portable pool (it’s tall and deep) which includes a flotation device that keeps the child’s head above water. She’s hoping to get funding to cover that item. The pool would be beneficial since it would give Khloë the ability to really move her arms and legs–aquatherapy!

The physiotherapist showed us how to do chest therapy with percussor cups. We are to do 3 minutes on each lung lobe when she gets a rattle in her chest or when she is ill.

Next up was the respirologist, Dr. K, a few students, and the respiratory technician. I’m not at all fond of the respirologist. He seemed to think us wanting to be proactive with getting Khloë specific equipment early on wasn’t a good idea–we requested a suction machine, CoughAssist, and pulse oximeter. We don’t want to wait until she’s in distress; we want these items as soon as possible so we can be trained on how to use them. He is giving us the suction machine, which the respiratory tech, Carlie, showed us how to use later on. However when I said I wanted the CoughAssist machine (as every single SMA parent has told us to get it ASAP) Dr K said that he only recommends it for children over 5 years old…to which I replied that Khloë may not reach that age. I was getting frustrated by this point. So after he left, Carlie compromised and said she would give us the loaner CoughAssist machine to try out in 2 months time when we go back. Jordan and I have come to the conclusion that we still want it NOW and not in 2 months. I sent an email to Carlie about our decision.

Finally we saw the social worker and explained all our concerns about Dr K. She assured us that if we don’t get what we want, we can always ask for a second opinion because it’s completely our decision about what equipment we want. With the neurologist not being there, we couldn’t go to him. The social worker and our nurse coordinator have been awesome, though!

The extraction

My wisdom teeth extraction went well on Wednesday. The dental surgeon removed two on the right side, and on the left side only the bottom tooth. I took two blue pills an hour before the surgery and sat in the waiting room with my mom. After a half hour, we stopped talking and I started to feel sleepy. By the time the dentist was ready for me, I remember stumbling a little on my way to the surgery room, not really aware of myself.

I was told I kept falling asleep during the surgery. The needles for freezing really hurt. Afterward, I dreamed going to wait in the car while my mom got my prescription for Percocet, took me to her house so she could pick up Mike, and sat me down in a chair in her kitchen. My sister was laughing at me. Oh wait, that wasn’t a dream, that actually happened. I just didn’t realize til the next day. lol Once my mom got me home to my apartment and gave instructions to my dad, who is still staying with me during Jordan’s deployment, I sort of remember sitting around with frozen peas in a baggie on my face. And apparently I updated my status on Facebook, which I didn’t know I had done until the next morning. Oops!

It hasn’t yet been 48 hours since the surgery, but I’m still a bit swollen on the right side of my face. I look like half a chipmunk. I’ve been eating apple sauce, a bit of yoghurt, cottage cheese, and a milkshake of blended banana, peanut butter, milk, and ice cream.

The suture strings in my mouth are starting to annoy me; they keep getting in the way of my tongue and it feels weird. I won’t be going into work tonight, obviously, and I was supposed to work tomorrow but I have a post-op dental appointment. For next week, my only shifts are Sunday and then Friday, so hopefully I’ll make it in for Sunday. Only if I can go a whole day on extra-strength Advil and no Percocet.

Finally gaining wisdom

I go in for dental surgery this evening. I’ll be having four wisdom teeth removed. One has already come through the gum, but it doesn’t hurt. Not looking forward to it; I’ve heard too many horror stories from my lovely co-workers. But I think it shall be okay.

I’ve stocked up on pudding, apple sauce, and soup. I need to get some bananas and ice cream so I can whip up some shakes to eat with a spoon.

Hershey’s Reese cookies are really yummy.

Attack of the Appendix

I’m going to try to remember everything that has happened in the last few days or so. It all began last Tuesday at work when I started feeling pains in my stomach. For two more days I suffered through these pains — at work and at home — but not once did I throw up. Thursday morning I had to leave work after only being there three hours because I could hardly stand up straight. I had to lean against the counter to find a bit of relief. The bus ride home was terrible; I think the bus hit every bump and pothole there is. I was unable to work Friday, once again due to these pains. They seemed to be getting worse. I didn’t know what was wrong with my body; it had to be something more than just a bug. Finally I woke up Saturday morning with the pains gone from my stomach, but they had moved lower and to the right side, just below my hip bone. This was not good. My mom told me I must go see a doctor because it could be my appendix…and if that bursts, that’s pretty much the end.

As soon as Jordan came home, we proceeded to go to a clinic where the doctor prodded me in the abdomen, declared the spot felt tender and I must be in pain, and announced that she couldn’t do anything but that I should go down to Hotel Dieu within the next couple hours. Alright, so we went. Once at the hospital I checked in with the triage nurse (what’s a “triage”?), told my symptoms, and then I was sent to the next lady to give her some information about myself, and then finally to the crowded waiting room.

We waited maybe an hour at the most before my name was called and I was led to a ward with a row of beds with pink curtains pulled around them. They showed me to the last bed, gave me a lovely green gown to wear (which I put on backwards, oops), and told me to pee in a cup. After maybe fifteen minutes a female doctor poked her head in with another nurse and I recited my symptoms again. She poked and prodded my abdomen and must not have liked what she felt because she said I needed to move to a private room so they could do blood-work. She thought the pain was caused by my appendix, but there was a couple other things it could be as well.

Once I lay as comfortably as possible in my new room, a peppy blond nurse came in to insert an IV into my right arm. Oh God. I think I started hyperventilating. I’m not good with needles, especially ones bent on taking some of my blood. With the IV firmly attached (ouch!) she dosed me with morphine and Gravol for the pain and nausea. As she injected the stuff my arm felt really cold. And then I was kind of floating, staring around the room, feeling quite out of it but not feeling much pain.

The doctor came back, did what she had to do, and declared she had to send me to KGH by ambulance for a CT scan or other tests just in case, and then possibly surgery. At this point they allowed Jordan to come in to see me. While we waited for a bed to be free for me at the other hospital, Jordan sat in the chair reading aloud from his LOTR book while I stared off in space.

The ambulance ride seemed pretty short. I was a little out of it and I remember telling the female paramedic that it was my sister’s birthday today and I was going to miss the cake. I think she found this amusing. 😉 I didn’t…by this point I was starving and could have done with a bit of cake! But I was not allowed to eat or drink. Jordan had gone to get some dinner and also had to drive the truck over to the new hospital. When we got to KGH, I had to shift myself, with some help, onto yet another bed. My arms were beginning to feel the strain of moving myself while not using any tummy muscles.

I was left in a room by myself. The door was left wide open because the bed was too long and blocked the door. I felt like I lay there for hours before a doctor actually came in. He asked if I had had a CT scan yet. I said no, I was just left here. (Had I been forgotten?) He asked me a lot of questions, wrote stuff on his clipboard, and said that Dr MacDonald would be doing the surgery. Surgery?! Okay, breathe. Jordan finally arrived and they let him in to see me. Then the doctor explained that the surgery was standard; three small incisions would be made (one for the microscopic camera) and since one would be at my belly button they would have to cut off my navel ring. At this point I broke down and started crying that no, they could NOT cut it off, please get some pliers and just open it up, it’s really expensive, blah blah. I don’t know why I got so worked up about it, but I guess it’s the only thing my mind could grasp at the time.

I remember being wheeled away toward the OR. I remember saying goodbye to Jordan. I remember talking to the anesthesiologist and then the male nurse. The nurse asked that I make sure I was not wearing any jewellry and I told him about my navel ring. Then I remembered the white gold earrings I was wearing. I had to take them off and he put them in a blue container and labeled it and I made him promise to get them back to me.

Not long after that I was wheeled right into the OR, switched to yet another bed, and given some oxygen. I remember seeing the male nurse place the container with my earrings in it on the bed by my leg. Then I was asleep…

My mind woke up first, I think. I couldn’t quite open my eyes, but I was aware of all the sounds around me. I could hear the low murmur of people talking. My throat was really sore and scratchy (from the tube that had been stuck in there when I was unconscious). Finally I could open my eyes into slits and sort of see around me. I asked for water and I was allowed to drink. My first question was, “Is it gone?”, meaning did they get my appendix out. They sure did!

I don’t remember the trip to the ward where I was to spend the next couple days. But I do remember being waked at three in the morning by a night nurse. She told me it was important that I try to pee because I hadn’t gone since before the surgery. It was quite difficult to get up without using any stomach muscles; I had to roll onto my side, grab hold of the rail, and push myself up. I had to travel to the bathroom with my IV kit, pole and all. I could hardly move my legs, it was sloooooow going. I felt like I hadn’t walked in ages. Don’t worry, my bladder didn’t suffer any damage, I was able to pee. 😉

Everything else is a blur of gross hospital food, uncomfortable bedding, a new needle put into my right shoulder for morphine injections every three hours that burned like you wouldn’t believe, reading, getting up every couple hours to pee, drinking unending glasses of water, and visitors. My mom and Mike came a couple times, so did Krystal, and Jordan of course, and Kendra came to see me because she was working at the hospital the days I was there.

Eventually I was taken off the morphine and given Tylenol 3s which did the trick just as well. Every morning a doctor would come in and poke at me, ask how I was feeling, etc, and then Monday morning he said I could probably go home that day. Thank God, I thought, because I felt well enough that everything drove me crazy. However, my nurse told me later in the day I had to stay another night because I wasn’t eating enough, but I was drinking plenty so she would unhook me from the IV bag (but left the needle in my arm). They also wanted to make sure I could get through the night on only one dose of Tylenol 3, which I did.

So Tuesday morning that doctor arrived again and the first thing he said was, “Didn’t I discharge you yesterday?” Frig. He said yes, I could go home, as long as I ate my breakfast. I called my mom and she arrived while I was eating Cheerios and drinking apple juice. She helped me change into pyjama bottoms and a top and a sweater, tied my shoes for me because I couldn’t bend, and packed up my things.

It was slow going getting me out of the hospital. I shuffled like a little old lady. I hadn’t been on my feet that long for a few days. Once she got me into the van, we had to drive over to Loblaws to get my prescription. That took twenty minutes so we had to sit upstairs, waiting, because there was no way I would be able to stand around. By the time we got my medicine and got into my apartment, I was exhausted. I crawled onto the sofa and lay down with my pillow and fell asleep… So glad to be home! 🙂

As for my gold earrings and navel ring? Never saw them again. The navel ring, it’s just as well, because the hole has already healed itself over. The earrings, though, make me mad. They were a gift from Jordan for our anniversary.