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.

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.

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.

I did it.

I turned in my notice at my day job.

I think I'm crazy. In a time when people are blessed to be working, I have decided to stay home with Samuel.

It wasn't an easy decision. I have the best job in the world. I work for a great company. They have never made me feel like Samuel shouldn't be my priority. But when it comes down to it, I was putting that pressure on myself. And we all know that when spread too thin, we aren't good at anything we attempt, and that is what was happening.

Keeping Samuel healthy is a full-time job in itself. Over the past year while I've been working at another job during the day, I've had GREAT help in making sure Samuel's needs are being met. He has the BEST care-giver a mother could ever hope for. Miss Amy (MeMe, as Samuel calls her) is willing to do whatever it takes to keep him at the top of his game. She cooks special meals for him. She steps in and administers albuterol when he needs it. Truly, I couldn't have found a better care-giver for Samuel unless, of course, I cloned myself, and even that is questionable.

But, as the year has gone by, I've found that I terribly miss being with him during the day. I've been praying for God to open a door to make it possible for me to have the best of both worlds: stay with Samuel and do something from home to help financially contribute to our family. Well, it happened. It was an open door. I asked and it worked out. Amazingly. I'm still astonished at how God works sometimes.

And then I started second guessing. Is this the best decision for us? I love my job! Is it really time for me to leave? In this economy... who really leaves their job? What about my co-workers? They are my friends too. What about the adult communication that will vanish from my day? uh-oh. This was going to be a tougher decision than I ever anticipated!

But, last week, I spoke up and made a decision. It's best for Samuel and, honestly and truly, no matter what I want, I have to do what's best for him and his health. And this is the best for him.

December 30 is my last day at my office job. Then I start the most difficult job in the world: stay at home mom. I'll be helping my dear friend Anna with her little (well, younger...he's not little...hee-hee) guy 4 days a week. I am so blessed. I'll go crazy, for sure, but it will be awesome. And in my spare time (ROFL) when I'm not chasing a very active two-year old, potty training, warming bottles and changing tiny diapers, I'll be studying chemistry. It's the last class I have to take before I can enroll in the nursing program. Yes, I'm going back to school too. Lord, help us all.

So, no, I'm not really leaving a job, I'm just changing jobs. And I am so excited about it. It's bittersweet, really.

Again, God help us all.

it's not worth it

Confession: I'm a selfish giver. I give things away knowing I'll get them back eventually. For example: I've given Samuel's friend Hudson shirts, shoes and toys knowing that when Hudson grows out, it will end up back in Samuel's closet.

It's in the spirit of selfish giving that I'm telling you to not even bother checking out this giveaway from BabeeLove.

The "Believe" pillow is not the cutest thing you've ever seen and you will have to look long and hard before you find anything you like on YouCanMakeThis.com. Trust me, I searched it for you already. And don't even bother going to BabeeLove and entering to win the current giveaway. You probably won't win either of the 2 she has available.

But, should you not take my advice and go over there anyway, don't steal my chances of winning. Good luck.

For those keeping track

I was impressed with Samuel's interest in the potty. I speak in the past tense because we had a relapse this weekend. Well, I didn't. He did.

I'll save you the long story but give the high points:
Samuel sat on the potty for 15-20 minutes with no activity.
I got Samuel dressed.
Went to get myself showered and dressed.
Samuel got himself undressed and went streaking through the master bedroom and closet.
He stayed missing a bit longer than most streakers do.
Samuel walks out of the closet and calls to me. "Mom! Mom!"
My response: "Yes, Samuel?"
Pointing to where he came from: "Mom! Pee!"
Indeed. Pee. All over my dear husband's clothes.
Thanks, sweetheart, for letting me know. Now, let's get you dressed again and put the laundry in to start.

Early Christmas and a Christmas Casualty

About a year ago I had a post titled Christmas Casualties. Although it's a little early this year, there has already been a casualty this year. Really, it's to be expected. Samuel is 2. He likes loves to play ball.

Before you get too impressed, I haven't yet decorated for Christmas. I changed the fall wreath hanging on our front door to a wintery wreath (you know, to keep up appearances) and set out 1 of the 2 Nativity scenes I have. And a box of decorations has made it in from the garage. That, my friends, is where the problem is. See, the box brought in has the ornaments in it. Glass ornaments. That look like shiny silver balls. Laying right on top. Begging little hands to play.

You can imagine Samuel's surprise when this ball didn't bounce on the tile, but broke into a million little pieces. What a loss.

There was another minor casualty. Of the 2 decorations I have put out, I broke something else. The Virgin Mary's hand broke at the wrist. I can't blame the little man for that one, though. It was all mommy. But nothing a little super glue couldn't fix. Now that I think about it, super glue has been my friend lately. It fixed a snowman/"believe" knicknack that somehow hit the floor a few days ago. Again, no big deal. Superglue. My friend.

I've had an early Christmas this year. My dad has come to visit for a week. When he visits, things get done around my house. Walls get painted, it feels more like home than before. This year, I got new furniture. An awesome dining table and chair set from World Market to replace the temporary (and 6 year-old) table and chairs* from Ikea. A brown chair, dresser and side table was added to the guest room. Now my guests can put their clothes away and not live out of their suitcase or pile clothes up on the floor.

Thanks, mom and dad (papa and gagaw) for the early Christmas gifts! Everyone in this house really appreciates it!

* Want some red chairs and cushions for your house? See my craigslist post.