Friday, July 31, 2009

Brain Day 2

So, when the nurse came out this morning to tell us that the PET scanner was down because of the storm last night and that they had no way of knowing when it would be back up, I thought I could see the day spiraling down and out of sight. Luckily, I was wrong. The nurses and technicians were wonderful and got everything ready in case the machine came up, which it did. They even gave the scan a go without sedation to reduce Collin's exposure to meds, and it worked! He didn't move a muscle. This also meant that we didn't have to spend time in recovery after the scan waiting for him to wake up and stabilize and see if he could tolerate food after going all night without and then being knocked out. Instead, we finished the scan and the nurse told us we could go. To which Kyle replied, "You mean, just walk out the door?" So, we hooked Collin up with a breastmilk feed and hightailed it out of there.

I tried to get the results this afternoon, but was thwarted by the lady at the neurologist's office who prefers for me to never get answers to any of my questions. I got her to promise me a time on Monday, though, so we should know something by midday.

The rest of the day got even better as we went back to the farm and Kyle and I napped under the oak tree with the finch feeder and Collin snuggled with his Nana until Grandma brought us all over a homecooked meal of homegrown food. We capped the day off with a family walk back the ridge with Collin in the carrier and the evening breeze coming just right from the west.

Thursday, July 30, 2009

Brain Day 1

Today was Collin's third EEG. He is such a pro at EEGs - definitely a star patient. He falls asleep as soon as they start putting the wires on his head and snoozes peacefully until the part where he's supposed to wake up, when he puts on an impressive show of cuteness. Everyone at the neurologist's office loves him. Naturally.

ANYWAY, his EEG still showed some abnormal activity, but it was improved from the last one, which was improved from the first one, so that seems like a good trend. Also, we got the results of his metabolic testing, which were all normal. (As I think I've said, I always have mixed feelings when a test comes back normal - a combination of thank-God-it's-not-that and what-the-heck-IS-it.) Our plan of action is to up his Clonazepam slightly in the hopes of stopping the spasms completely and giving his brainwaves a chance to normalize. The doctor also ordered a spinal tap and some more blood work which, when done, will have covered pretty much every possibility.

Of course, much hinges on what we learn from the PET scan tomorrow. We're already in northern Kentucky, but we'll be leaving bright and early to make it to Children's Hospital in time to register, get Collin ready for sedation, etc. If we're lucky, the results will be available to the neurologist by the afternoon.

Wednesday, July 29, 2009

A Day In the Life

Today was supposed to be our relaxed day this week - no therapies, no appointments. But when I saw Collin wiggling every time the pump ran during his morning feed, I knew the gig was up. I uncovered him and, sure enough, the feeding tube had somehow become disconnected from his port and his whole feed had flowed all over his stomach and the blanket and the boppy and the pack-n-play. And, of course, this was the feed during which I had just given him all of his meds. Since I didn't know when it had come out, I had no way of knowing whether he had gotten his Topamax, so I had to call the neurologist to discuss the risks of missing Topamax versus the risks of a double dose. When they finally called back (call backs from doctors' offices will be a post for another, less frustrating time) they told me to give a half dose and informed me that we cannot move our EEG scheduled for tomorrow. So that means we'll spend most of the day at the neurologist's office then drive up to Cincinnati for a long day at Cincinnati Children's Hospital for the PET scan. Not that I mind. I would spend all day every day wherever I needed to if it would help Collin, but exhaustion triggers spasms and I just hate dragging him from one strange, stressful, poking, prodding place to another.

Luckily, we'll be on the farm this time tomorrow night, with Nana and Grandad and Grandma and Brian and Aimee and Steve and the cows and the trees and the sweet air and the ridge tops. If that doesn't counteract some stress, I don't know what will.

Tuesday, July 28, 2009

Collin Gets Clean - In More Ways Than One

As the 'roids make their way out of Collin's system, we're starting to catch glimpses of our sweet little boy again. Yesterday, when our good friends Sarah and Nicholas stopped by for a visit while they're in town to take the bar exam, Collin toned down the growling and even opened his eyes for Nicholas. Then he declared today "I DO Remember How To Smile Day" and set out to prove it by grinning and squealing and kicking and just generally being awesome all dang day. I thought I was going to puke from happiness.

Related to Collin's transformation as he comes clean from one set of drugs is the fact that he no longer acts like he's dying when we try to give him a bath. It was weird not feeling like I was being shot at while trying to frantically finish rinsing him. I stood there kind of confused as he kicked in the water and he looked at me like, 'what?'

PS. No spasms since Saturday morning.

Sunday, July 26, 2009

My friend, the G-tube

Like I said, we changed Collin's g-tube button yesterday and it got me thinking about what a bizarre road this has been so far. When Collin was in the hospital the first time, a g-tube seemed like the worst thing ever. When it fell out and he had to go to the emergency room or Kyle had to replace it, it was so traumatic. I don't mean to belittle the seriousness of that time for us - it was the hardest thing we had faced up to that point. But you learn that there is something major and unidentified wrong with your child's brain and things shoot into a different perspective. And so I found myself swabbing around the hole in Collin's abdomen yesterday and thinking about how ironic it is that that hole is the least of our worries.

In fact, I have to admit that I am thankful for Collin's g-tube right now. When he cut teeth while he was on that heavy duty steroid, I didn't have to stress (as much) about the fact that he refused his bottle for a week. When he switched meds and couldn't stay awake, we could feed him while he slept. When I'm giving him five or six medicines at a feeding, I don't have to wonder if it all got down. Even though the Topamax decreases his appetite so that he couldn't care less about the stinking bottle and lets the milk run down his face and neck and saturate the top half of his onesie, we don't have to worry about his weight. And now, while he's too agitated to concentrate on anything but fussing and growling and consequently makes himself cough and choke while he's eating the one ounce he actually gets down, I can just hook him up and know that he will be getting everything he needs to get fat and strong.

I believe wholeheartedly in the goodness and sovereignty of God, but I am not one who is inclined to say that everything happens for a reason. By that I mean that I don't think Collin got his g-tube in order to make this time easier. But he did get it and it does make this time easier, and so I just want to give a little nod to g-tube, our friend in hard times.

Goodbye ACTH

This is a picture of $80,000. No, I'm not kidding. Collin is officially the most expensive kid I know (and worth every penny, I might add). Don't worry, we have great insurance.

Collin got his last shot of ACTH today, a fact which generates mixed feelings in me. On one hand, it makes me sad because we had so hoped that it would eliminate his spasms, especially since it is supposed to be the big guns of treatment for Infantile Spasms. It has definitely had an impact on the intensity and number of spasms, but it just didn't do the job. On the other hand, I'm thrilled to see it go. When ACTH leaves, so does Zantac, blood pressure checks, twice daily blood sugar checks, daily shots in the leg, and hopefully Collin the Terrible, who has been staying at our house for a few weeks.

In related news, Collin's Didi bought him the greatest swing today, which produced his five calm minutes of the day. As a bonus, it also has music, lights, and cool fishtank-like things on the sides. I'm sure it will make his therapists giddy with delight.

We had a few episodes of spasms this morning, which is always really discouraging, particularly since one had shaking after the spasms again. However, he did open his eyes a couple of times and didn't skip a beat when we changed out his g-tube this afternoon.

Friday, July 24, 2009

Road Warrior

Here's a picture of what Collin did most of the day today. We drove almost four hours today because this amazing energy healer I've worked with for over ten years had an opening for a two hour appointment and I thought it was important for Collin to go. He slept the whole way up and fussed the whole way back, but we had a great, very helpful session, so it was worth all the trouble. We even got to squeeze in a short visit with my family on the farm since we were so close!

No spasms yesterday or today so far. He seems to be a little less puffy as we wean the ACTH, but he is still super agitated most of the time he's awake.

Thursday, July 23, 2009

Collin's Crazy Therapies #14 & #21

We had a great visit with Collin's physical therapist today, even though she added two more items to our list of crazy therapies. The first was the contraption in the picture. By name, it is a kicking toy. In reality, it is an insane combination of circus and arcade that explodes to life every time one of Collin's toes tap one of the big green feet at the bottom. Great idea in theory. It teaches cause and effect and sensory associations. Except for the fact that it scared the pee pees out of his mom the first like 20 times he triggered it. After that, he either figured the thing out or was just sitting too close to it, because it played constantly - complete with flying and spinning plastic doodads - for about half an hour straight while I slowly lost my mind. Seriously, though. It's great to see him interact with anything at all.

The next crazy therapy is called therapressure brushing and consists of using - you guessed it - a brush to help a child develop his sensory system. You pull the brush very firmly over the skin of the legs, feet, arms, hands, and back, then follow this by pumping the leg and arm joints and breastbone and then swiping the inside of the mouth three times. Like I said, crazy. And you do it every two hours. But I will tell you this - after the first brushing, he stopped the growling he's been doing and put his hands in his mouth. After the second brushing, he opened his eyes for the first time in I don't know how many days. And tonight he smiled while I made his arms dance to some music. So I will be brushing Collin until further notice. He'll be so nice and shiny.

We also had a nice talk with his speech therapist, who discussed our strategy for introducing solids (it's going to take a lot of spoon practice before we even introduce any food) and bragged on his bottle feeding skills.

Our PET scan got scheduled today finally. We'll be heading up to Cincinnati next Thursday for an 8:30 am appointment at Children's Hospital on Friday.

Get 'Em While They're Hot

Take a look at these awesome things my friend Sarah designed. Be sure to check out the back.

Wednesday, July 22, 2009

Hard Day

Because Collin was such a trooper yesterday and because his medicines are really making him beside himself, we decided to let him do whatever the heck he wanted today. No therapies, no forced mouth feeds - only what he responded well to. This is a picture of his activity of choice, although receiving hand and feet massages was a close second.

Collin is still refusing to open his eyes even when he is awake and spends most of his waking moments in a state of total agitation, kind of growling and wringing his hands. As you can imagine, this is extremely hard for us, since we get almost zero interaction from him and feel helpless to comfort him. We're hoping that as we figure the meds out this will subside.

The other tough part came when Collin had a long episode of spasms this afternoon, intensified by the fact that he started to shake after each one; this is something he's never done before and it scared the crap out of me watching it happen. It's amazing how three minutes can totally change the rest of the day.

On a side note, Collin's neurologist has ordered a PET scan and we found out today that there is nowhere in Louisville to get one done, so we'll be trekking to Cincinnati sometime soon to figure out more accurately how his brain is functioning and where the source of the spasms might be.

Of course, no day is totally devoid of joy, thanks to the goodness of our God. We had a wonderful visit with Nana, including lots of singing, nursery rhymes, and 'running', and Kyle's dad (who I think would make a great "Papa" but I'm letting him pick his own grandfather name) brought us pizza and stayed for some cuddles with Collin and conversation with us.

Tuesday, July 21, 2009

Neuro Day

Neuro Days make us all want to pull the covers over our head. Today we were lucky enough to have our good friend Shelly come over for the morning, which always makes everything run more smoothly. We also had our last visit from Collin's in-home nurse, Lisa. Collin weighed in at 12 lbs 10 oz!

We packed up most of our earthly belongings and headed to the neurologist's office for an EEG and discussion of the next stage of the treatment plan. Collin did great during the EEG, but he still has some abnormal brain waves even though he's been seizure free for five days. He's also having all kinds of yucky side effects since he's on three heavy duty meds at the same time while we wean him off ACTH, ramp up Topamax, and use Clonazepam to help with the transition. So, the plan for now is to stop increasing any of the meds, speed up the ACTH wean, and just watch. If the spasms come back, a B6 regimen is next in the line-up of treatment options.

After over three hours at the neuro's office, we raced home (with me pumping on the way) to meet Collin's awesome vision therapist, who was waiting for us on our porch. We didn't get a lot done since Collin has refused to open his eyes for the past couple of days and was just generally freaked out by the craziness of the day. She was wonderful, though, and just talked me through some things, including suggesting that we hold off on using his glasses for now since he has so much going on at once. When his meds get evened out, we'll think about reintroducing glasses a little bit a time. The only bad part about the session was that Collin had a few tiny spasms as he was waking up from a nap. No matter how minor they are, it's crushing every time.

Collin's Nana came this evening, which is always a treat for everyone. Kyle and I got to take a long walk together and catch our breath from the day before launching into Collin's extensive bedtime regimen and falling into bed.

'Normal' Life

We had a great, spasm-free weekend that included a night at a baseball game. We gave Collin a g-tube feed and all five of his meds sitting in the back row of section 113 and changed every article of clothing he had on because disposable diapers can't handle his crazy amounts of pee. I don't think either one of us saw much of the game (and neither did Collin, since he's refusing to look through his new glasses), but it was nice to get out of the house and do something 'normal'.

If you think Collin's head is looking pumpkin-ish, you're right - it's the steroids giving him moonface. Since we're in the middle of weaning him off ACTH, we're hoping that will go away soon.

In other news, Collin is acting like he's teething again, after his first two teeth just came through last week. Because we don't have enough going on. ;-)