Thursday, January 28, 2010

Annual Clinic visit and results

Samuel had his annual CF clinic visit, which seemed much like a routine visit, on Tuesday.

Just a little background information about me, Samuel's mommee. When I haven't slept well, any and all coping mechanisms fly out the window. Knowing this, it was not good that I didn't sleep well Sunday and Monday evenings. I was tired on Tuesday. Monday evening I kept thinking "I need to get rest. Tomorrow is going to be hard." But did I get good rest? NO! Of course not!

Some other background information: We've been struggling with Samuel's weight (or lack thereof) since he was probably about 9 months old. It was then that we started altering expressed breast milk to add extra calories. We've always been aiming for the 75th% as far as his height to weight ratio, but have only come close at one visit and that was about a year ago.

You may recall his study visit (not a normal clinic visit) revealed a 0.6 pound weight loss over a few months. This got me super busy trying to make up the difference before our clinic visit less than 2 weeks later. While we did add a few ounces, he weighed in at 26 lb, 11 oz, we didn't make it back up to his previous weight of 27 pounds. This brought his height/weight ration percentile down to the 10-25% range.

While this weight plateau is normal for a child without a chronic disease, it's a cause for concern in someone like Samuel. We've been adding as many calories to his food as possible, encouraging him to eat as much fattening cheese, milkshakes and pizza as possible. I can only imagine how he must feel after eating such heavy food all the time. His "super milk" alone makes me queasy. 4 ounces of whole milk, 4 ounces of half-and-half plus a packet of Carnation Instant Breakfast...there is nothing refreshing about chugging half-and-half.

In the 2 years we've been taking Samuel to clinic, we've learned where we stand on his weight by how quickly the nutritionist would come in to see us. It should have occurred to me after we were kept waiting for about 45 minutes that something bigger was going on. But, again, the lack of sleep thing...

Samuel's doctor, Dr. O, came in and apologized for keeping us waiting. Our conversation flowed as normal for a while. Then we discussed the weight issue. I really respect Dr. O. He's never used scare tactics to influence our decisions. So I was pretty open minded when brought up the G-tube. Remember, lack of sleep and I can't cope. I started to cry. I knew this conversation was coming. I just had a feeling that today would be the day since he would have a weight loss.

However, as the nutritionist put it, it's an issue of volume. He needs about 150% of the "normal" caloric intake for a boy his age but he doesn't have as much room in his stomach. That means, if a 2 year-old without CF needs 1400 calories, he requires 2100, just to maintain. When he gets sick, (notice I didn't say "if") he will not eat as much, meaning he will lose more weight and we will be further behind.

To me, a g-tube is a last resort, although I know it's not supposed to be. It's just hard, knowing that as much effort as I put forth, it's not enough. It's heartbreaking, really.

It's also heartbreaking to try to convey the concern to someone who doesn't understand. It's not an issue of eating. Samuel eats like a normal 2 year old. He eats when he wants, and when he wants, he can eat a LOT. He drinks the "super milk"....as much as 16 ounces of it a day. I make special food for him all the time. He eats cheese with every meal. Milkshakes about 3 evenings a week. I can't make him eat any more.

Yes, he is very active. I know this burns a massive amount of calories. But I will not discourage his activity because I know it is vital for airway clearance.

For right now, it's still our decision but we are being encouraged to strongly consider the idea. If we go ahead with it, it will not be a temporary solution, just like this isn't a temporary problem. He will likely have the G-tube for many years, likely until his teen years or later. Of course, it will be changed to accommodate his growing body, probably about once a year.

We are still considering the idea, trying to get used to what it means to our family and just how much it will change things, better or worse. Part of me still can't believe this is even being considered. It's a lot to wrap my mind around.

Thanks for your continued thoughts and prayers.

I've been inspired: Our IPL story

There is so much I want to write about today since we had our annual clinic visit yesterday. When I say "annual clinic visit" it's really meant to be were we review the last year and make new goals for the upcoming year. But really, for us, it's not too much different than a routine (read: every 2 or 3 month) clinic visit.

But I'm not talking about yesterday's clinic. I'm talking about our experience with IPLs, or Infant Pulmonary Labs...the infant version of Pulmonary Function Tests (PFTs). See, what happened was, I just read another blogger's experience with taking her son to his first IPL and was thinking about our first attempt and first real IPL. She spoke about her experience with her son and I thought I could offer our perspective as well. And it will help get my mind off of our news from clinic yesterday.

Let me start this by saying I am not a medical professional. I'm just a mother who has gone through this one and 3/4 times. :) Yes, my experience and advice are editorialized. I'm a blogger. It's what I do. If I missed a responsibility of a team member, I apologize ahead of time. Like I said. I've only gone through this one complete time.

So this is how it goes, at least, it's how it went for us:
Samuel's IPL was scheduled at 1:00. We needed to check in at 12:00 noon. Once checking in, we went to the area of Phoenix Children's Hospital where they conduct various sleep studies. In same hall with us were other exam rooms. One had a scale where we had to get Samuel's current weight, as in, weight that instant, to calibrate the machine. While the machine was being calibrated, we answered various questions about Samuel's day, last meal, last drink, current meds, etc. and kept him awake. The machine calibration always seemed to take longer than I thought it should.

By about 1:00, it was time to start sedation. The sedation of choice: chloral hydrate. It tastes bitter (I'm told) so giving a hungry, sleepy infant, a bitter tasting liquid doesn't seem very nice. The first time we attempted the IPL, our nurse also had some sugar water on hand to help it go down a little easier. I appreciated this gesture.

Note that we did not need to put Samuel in a hospital gown but I made sure to dress him in comfortable clothing free of hard buckles or buttons that could hurt him when in the vest-like contraption.

Once Samuel went to sleep, which took about 15 minutes to make sure he was in a deep sleep and not just dosing, we put him in the boxcar. It's not really a boxcar, but it looks like one. Once laying down, they put his arms in the vest, and a bladder on his chest, used to expel the air from his lungs during the test. The vest hooks up to various tubes. They also put a mask on his face, sealed tight with medical putty. There are also various hoses an tubes coming from the mask. Also, he had a monitor attached to his foot (I think) to track his vital signs.

The test was done in two segments. The first half tested Samuel's lung function. The second half repeated the first but after administering Xopenex. From the time he got in the box, it took about an hour. Although we were able to watch the test being administered and real-time results, I had no clue what I was watching. I found it more interesting to follow the nurse.

There were three staff members with us during the test: the physician administering the test, respiratory therapist, and nurse. The physician actually performed the test and tracked results. The respiratory therapist made sure the materials were appropriately sized and fitted, and administered the meds at the appropriate time. A nurse helped with getting Samuel's weight and served as his advocate during the process. She tracked his pulse and blood pressure routinely. She also helped rock him to sleep and wake him up at the end of the procedure. (Can you tell I spent more time paying attention to the nurse?)

After the procedure was finished, we had to wake Samuel up to make sure he was able to swallow without choking. He had some apple juice and was able to go back to sleep. While he was being woken up, the physician was able to print and and review the test results with us. It was great not having to wait for these results but having them instantly.

Needless to say, Samuel's sleeping and eating routine were a complete wreck that day. I tried to not let him sleep the entire afternoon so that he would rest at night. I also tried to catch up on lost meals by giving him frequent snacks when he was awake.

You can read about our first attempt, and first real IPL on the links provided, but I'll give some pointers. Hanging out with a hungry, sleepy, cranky baby isn't really a lot of fun. So here are some of my suggestions. Do what you want but this is what worked for us.
  • Take advantage of the cut-off guidelines for feeding and drinks.  If the nurse says no milk after 9:00 am, then feed until 8:59 am. No clear liquids after 11:00? Keep water there until 10:59. No need to make them suffer for longer than necessary. And really, they might not even notice. Yes, I said might. Samuel was more concerned with not being able to sleep.
  • As painful as it is, prepare to party! Keep him or her awake, no matter what. We ran errands because I knew it would keep Samuel occupied. But if, for your baby, it means going to the park or swimming in the morning, do it. Stay busy and have fun. There is no reason to make the entire day miserable for your child.
  • Prepare to wait. It stinks. When you get to the hospital, or where ever you are having the test done, know this: it won't be as quick as you'd like. For us, we had to register at the hospital which meant staying the waiting room for a while. Once registered, we still had to wait for the machine to be calibrated. Trust me, it seems like it takes forever, but it has to be done. Just try to hang tight.
Please let me remind you: I am NOT a medical professional, although I am planning on it. This review was simply from my perspective as a mother.

I hope my review helped prepare you for what to expect at your child's IPL. The process can be quite intimidating but it's worth it. If you have any questions or I left anything out, please feel free to ask.

Monday, January 25, 2010

An official update

It's been a while since I've updated.



Last week we had a follow up visit at Phoenix Children's Hospital. This was not a normal clinic visit, but a study visit - regarding the hypertonic saline study Samuel is participating in. We were expecting the normal news and events so you can imagine the surprise when the scale revealed a weight loss. A 0.6 pound weight loss. Now, for myself, I'd be delighted to lose this amount of weight and it's not difficult for me to do so. It's also that much easier for me to gain it back. In one afternoon.

But it's not so easy for Samuel. In fact, I often feel like we fight for every ounce he gains. I remember when he was stuck at 22 pounds for about 6 months. (Not sure if it was exactly 6 months but it sure felt like it!)

That very day I came home and started in on the "pink" milkshakes. He likes drinking strawberry milk so I enjoy making him some strawberry milkshakes. Yes, I eat vicariously through Samuel. Gotta problem with that? :)

He must have picked up on my stress (who wouldn't have?!?!) and almost immediately started refusing his ezymes. Talk about frustrating! What good is eating high-fat/high-cal if he can't process it?

Then, it wasn't too much later when the only thing he wanted to eat was Cheetos. Boys can't live on Cheetos alone but he sure tries. Luckily, the enzyme and eating strike has lasted only a few days but I'm feeling like we can't afford to lose any days! We have a clinic visit on the 26th where his weight will be taken and it will count then. I'm fearful we are having a repeat of the last weight plateau. He had a pseudomonas infection then. I *really* hope this is not the case. Aside from our high co-pay for Tobi, the time it takes to administer is just a little over our sitting-still time limit. It takes about 25 minutes just for that one medicine to be administered, making his twice-daily routine well over an hour.

Besides all the medical updating, Samuel is a fun two year old! He is such a sponge and is learning more than I realize. He says things like "I don't know!" and "What happened?" The other evening, as we were driving, Kevin and I realized that we were in the wrong lane to pass straight through an intersection and would have to sit at the light for another cycle. Kevin said "Oh, fiddlesticks" I said "rats!" and Samuel chimed in from the backseat with an appropriately and equally disappointing "Oh MAN!" And it was at that moment I was thankful we don't have, nor generally spend time with, potty-mouths.

He is also really enjoying spending time with me in the kitchen, which has become more frequent since my recent, uh, status change. Working at home means working in the kitchen! When he thinks something is happening at the stove, he wants to be held to see what's going on. And let me say, in addition to being dangerous, cooking with one hand is just about impossible. So last night I got smart. I brought his high chair in the kitchen, set it a few feet behind me, gave him some cereal to throw in the floor for the dog snack on, and he sat (mostly) in the high chair and watched me make dinner so I could cook.

Lately we've been having trouble with him not wanting to sleep and not wanting to stay in his bed. Just one more reason I have yet to transition to a big-boy bed. Last night, midnight, this was happening again. Kevin and I wanted to go to sleep and Samuel wanted to play the piano/our foot board and sing us some songs. A few nights ago I attempted an new strategy and it worked then and again last night. If you are having issues with your little one not wanting to go to sleep, I highly recommend trying it. Instead of saying "You have to go to sleep now" I said "Mommy and Daddy have to go to sleep but you can stay up as late as you want. You just have to stay in your bed. What story would you like me to read to you before I go to sleep?" Last night we read about Hermie, he had some toys, I left the closet light on and was only awakened a few times by a singing, playing little boy. It was wonderful.

Monday, January 18, 2010

Just a wee-bit busy

Yeah. My last update had me saying I turned in my notice, which I did. And my new job started on the 4th. It's been great! There is just one thing. My old job didn't exactly let me go. Not complaining. I love being needed. But now I'm just working from home. It's been fun: caring for an infant and a 2 year-old and working trying to keep up with the work that's pouring in from the office. So, my dreams of feeding kids, then everyone napping for a few hours while my house stays in pristine condition, and I get to spend my time in devotions, blogs, tweets, and crafts to my hearts extent have been crushed. Destroyed. In fact, I can't even finish this post because the kids are waking! Needless to say, switching gears to a stay-at-home mom has been eye-opening. And I love it.

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