Saturday, April 28, 2012

ER Visit - Respiratory

My Mother-in-Law, who is a respiratory therapist, called us at 1:30am.  They were enjoying an overnight visit with C, but she'd become concerned about his breathing, his respiratory rate was about 38.  At that point, it wasn't bad enough that we needed to meet at the hospital, but it was bad enough that she wanted us to be with him because we knew his baseline better.  C's breathing was noticeably raspy, junky and crackly. He sounded awful.  We dug out his inhaler from his RSV a month ago and gave him a couple puffs.  Over the next half hour, it improved but not by much. I counted his respiratory rate and he was up to 43.  C hadn't slept yet, he was working too hard at breathing.  He was happy, playful and alert, but his respiratory rate was getting higher and higher.

We finally decided to go to the ER.  We broke out the hospital packing list and quickly packed enough to survive being in a small room at 4am with a very alert toddler.  We arrived at 4am and were taken immediately into triage.  His pulseox was 96, respiratory rate in the low 50s.  We were taken to an observation room and offered the opportunity to watch TV, they didn't know what DVD if any was in the player.  I told her not to worry, we'd brought our own.  C's show of choice is signing time and I suspect they don't have that DVD readily available.  This trip marks the first time we've kept C busy in an ER or hospital room by watching TV.  He was way too young on previous trips.  Though it has worked for his echos in the past, so we knew there was a pretty good chance we'd be able to get away with it in this setting as well.

We passed the next 5 hours in the ER.  We'd get a breathing treatment from respiratory and then get checked periodically over the next hour.  My husband attempted to sleep on the bed in the room, I sat in the recliner with C periodically nursing him and rocking him.

The doctor came in one final time just before shift change and told us she was handing us off to the day crew.  If the next breathing treatment didn't improve his lung function enough, she thought we'd be admitted.  Thankfully, the morning doctor was a lot more laid back.  He asked us if we were comfortable with him and stated he thought C was doing fine.  They let us go home at 9am, 15 minutes after C finally fell asleep.  C falling asleep was how I knew he was fine to go home.  As long as he was working to breathe, he wasn't willing to sleep.

We came home after a long exhausting night, we all took turns napping.  C had 5 hours of sleep, my husband had the interrupted sleep at the ER + 2 extra hours and I had 3 hours.  A very long end to our weekend.

A follow up visit with our pediatrician showed his lungs clearing nicely.  We can expect issues like this for the 6 months following his RSV infection.  Thank goodness for Synagis, we'd be in a much worse place without it.

Friday, April 27, 2012

Weight Check - 4/27/2012

First 2 week weight check after switching away from the nutritionist.  I felt like C ate really well this week.  But we didn't see any weight gain at all.  21lbs 9 oz - lost 3 oz.  No change in height.

Today wass our first OT appointment for this round of FTT.  I think a lot of our issues revolve around how often C got sick over the winter.  But he is hard to feed and does seem to use eating to assert some control over his life.

Our OT is awesome.  She gave us some great strategies both for returning control over eating to him without making his option to accept or reject what we offer and distracting him from the fact that he is eating by getting him to focus on the fact that he's eating.  Weird right *grin* Instead of asking him to eat, we ask him what it SOUNDS like when he eats.  What it LOOKS like when the food is in our mouths, how the colors mix etc.  We always offer him bites of two different foods, which gives him the opportunity to choose which food he wants instead of deciding whether or not he wants food at all.

Hopefully these strategies and a good healthy period will help us get some weight gain.

Thursday, April 12, 2012

First Nutrition Consultation

Last month, GI referred us to nutrition because C hasn't been gaining.  Today, we had the long awaited appointment with the nutritionist.  We were eager to explain what we've been trying and to get some new insight and ideas.

Unfortunately, the dietician we are working with has the personality of a rock.  She took FOREVER to get a length on him because he struggled and panicked.  She didn't even try to calm him down while he screamed she just pulled harder trying to get him to straighten his legs. She didn't react to any of my attempts at humor nor listened when I tried to tell her details I thought were both relevant and important.  This is our first experience with someone who didn't want to know or care what he'd been through.  She treated me like he and I were irrelevant to the caloric formula she was working with.

I tried to tell her about the number of times he's been sick over the winter, which is when the failure to thrive recurred.  She said anything that occurred before was irrelevant.  Refused to listen to me when I tried to tell her he was sick this week and ignored the fact that the month he wasn't sick he gained 12 ounces.  She wouldn't even entertain the idea of listening to me explain what has happened as far as his illnesses and eating over the last 6 months.

Here's the main thing I wanted her to hear: from 2/29 - 3/30 we recorded a 340 gram weight gain.  But from 3/14 - 4/12 we recorded a 30 gram weight gain.  He was getting over RSV on 2/29 and was healthy from 2/29 all the way through 3/30.  However, he wasn't healthy for the 3/14 - 4/12 time period, specifically 4/6-4/12.

Last Friday (4/6) He spiked a fever of 103.9, it was at first thought to be an ear infection, so they prescribed Augmentin (which messes with his eating).  On Saturday night he screamed all night long and wouldn't nurse or drink anything beyond a few sips of water, his throat was VERY sore.  We took him back to the doctor on Sunday (after hours clinic) and they diagnosed a virus causing stomatitis in the form of sores covering the back of his throat.  His ears were clear then.  He didn't eat that day, but finally started nursing again Sunday afternoon.   On Tuesday I called my PCP and she agreed we could stop the Augmentin because it was probably the fever that caused his ears to be red.   He ate the bare minimum for the last 6 days (mostly goldfish crackers and water) which I think explains the weight issue we're seeing at this weigh in.  He's continued to have a fever off and on throughout the week.  Wednesday and tonight (Thursday) he's had a fever around 102-103 degrees.  He completely refused to eat lunch or dinner today.  He had a biscuit (no butter) for breakfast, 13 goldfish for lunch, crackers with cream cheese for snack and the daycare convinced him to drink some heavy whipping cream.

This week is only a sample.  The entire winter was like this!  She wouldn't let me talk about that.  She told me I had to get him to drink 20 ounces of fortified whole milk a day (either pediasure, boost or carnation instant breakfast) in addition to .  I tried to explain he hates that stuff and would rather not drink.  She said no water, fortified milk only and to just keep trying until he takes it.  He shudders and whips his head away when he tastes it.  He's begging me for water.  This can't be the right answer.  She wouldn't listen to any of my concerns.  She just kept talking about whipping cream, half and half and butter.

He doesn't like sweet or rich foods generally, he prefers savory foods and veggies.  I was hoping for ideas on how to transition him to being able to eat richer foods.  She just kept saying to only offer those foods.  She wouldn't listen when I tried to tell her he quit eating the last time we tried to "strong arm" him into eating what we wanted.  She wouldn't even really listen as I tried to talk to her about our past eating struggles.  She did tell me that I needed to not express anxiety about him eating because the fact that I'm worried about his calorie count may prevent him from eating.

She refused to look at his recorded food diary.  She said it was too much detail and she just wanted to know what he ate yesterday.  I was trying to show her the difference between healthy eating and sick eating.  She wouldn't even look at it.  I found the whole experience anxiety inducing and not helpful.  We went on a whirlwind shopping trip after we were done and picked up butter, cream cheese, heavy whipping cream and crackers.   He has a new supply at home and day care.

If her goal was to stress me out she succeeded.