I'm going to do something that I didn't want to do: take a moment to have an almost-breakdown about the RAD and the RSV and the other aggravating acronyms that make me cringe and want to throw something across the room whenever I see them attached to my son's name on his medical documents. I never like to whine too much about these things around other people because I know that it could be extraordinarily worse and in the grand scheme of life, I should be keeping my mouth shut and my concerns to myself. I recently read a blog in which the writer was feeling similar to the way I was feeling when a commenter said that life is subjective, that it's not a competition, that just because someone's hard might be harder than yours doesn't make yours less hard or unpleasant. I really couldn't find a single ounce of anything but the honest to goodness truth in that notion.
The thing is, I'm feeling defeated. I was driving to the pharmacy the other day to get refills on one of Ethan's nebulizer medications. Halfway there -- and mind you, it's about a three minute drive -- he began choking. Choking on mucus, making this awful grinding noise with his throat as I watched his eyes well up in the backseat mirror. I pulled over at the playground I was passing, flung him out of the car seat and stuck my fingers down the back of his throat and removed a huge glob of mucus. He proceeded to vomit all over me and then cried, cried, cried as he clung to my neck. And that was a good day.
When his RAD is flaring up, we can't leave the house. It's fine the first couple of days but once we reach the one week mark, we're both ready to begin start climbing the walls. I walk around with snot stains on my jeans and a worry in my heart because Ethan has refused ninety-five percent of the food and drink I've offered for the day. I take forty minutes getting him down for a nap and within minutes, he's coughing and hacking and choking and unable to sleep. He spends the days exhausted, wanting to sleep but being unable to, coughing, hacking and sounding like Darth Vader. That wheeze is the worst. I can never get the sound out of my head.
These days are hard and they oftentimes are lonely. I try to explain to people how I can't even use the bathroom alone because I can't let Ethan cry, even for a second, when he isn't breathing properly. It's difficult restricting the activity of a baby who just wants to go. It's difficult trying to be one step ahead of them so they don't cry, don't stress, don't excite themselves too much. It's difficult trying to get them to eat when they don't want to because even taking a moment to chew or swallow makes them feel scared that they cannot breathe otherwise. Mostly people remind me that this goes away, that maybe it will return once every few months, that we really are lucky. They're right, I know that, but these days are still so hard. The walls close in on me while I listen to my son wheeze, listen to him cry and cough and roll around in discomfort at nighttime.
I just wanted to take a minute to say that it's temporary, but it's still hard. These last few days have been some of the hardest. Today Ethan was also diagnosed with his very first ear infection. It was one of those things that just made me laugh at how life can sometimes be, challenging us to see how much we can possibly take. Ethan went to sleep smiling tonight. A good friend of mine managed to find him a replica of a toy he adores at his swim school and his day was entirely made. It's the memory I'm trying to keep with me of today as I get ready to close my eyes and wait for tomorrow.
When my nephew, Asher, was a baby he came down with a really, really bad cold that pretty much shot his little immune system because he was so small. He had to use the nebulizer quite a bit. In fact, from then on almost every time he got a simple cold it would turn into something awful where he had to use that thing. It was heartbreaking to see his little face in that thing. He is four years old now, and still has to use it sometimes when he gets sick but not nearly as often as he did when he was smaller. I just wanted to give you a little hope about it :) It IS temporary and he WILL grow out of some of that. I know in the moment it seems like there is no light at the end of the tunnel but it does get better! Don't be afraid to take him out on walks, take him to the beach in the evening to breath in the salty air, heck, walk around the mall with a latte if you are feeling at your wits end with being cooped up.
ReplyDeleteI feel like I want to give you a BIG HUG right now. You are an amazing mama, lindsay. Keep up the good work with that little man :)
oh, and one more thing, when olivia had her first ear infection someone suggest a drop or two of warm olive oil in her ear. Worked like a charm with the pain!
ALSO, you may want to consider elevating one side of his mattress some. If he has an ear infection laying flat puts alot of pressure on their little ears and makes it hard for them to sleep. Livi's doctor suggested I roll up a towel and put it UNDER the mattress so the side where her head lays is slightly elevated. It definitely helped!
It sounds like Asher and Ethan should be BFF. :( That's just what happened to him when he got RSV back around Thanksgiving. His immune system had no chance. :( Throw in the fact that my family and I are allergy and asthma prone and, well, poor kid had no chance. :( A change of weather can make Ethan all wheezy but when he gets a cold? FORGET IT. We end up where we are now, just like little Asher. :( I took your advice this morning and we went to Towncenter before it opened -- when only Starbucks was open! We took a nice, airconditioned walk around while I drank a delicious latte and Ethan enjoyed the fountains, haha.
DeleteThank you so much for everything, Rachel! You are so awesome. I wish we lived closer by you guys! I did the propped up thing (it helps with his congestion, too, so it doesn't drip down his throat) but am having trouble getting him to not roll down to the foot of the crib. He keeps waking up coughing because he's rolled himself down. I hadn't heard that about the olive oil, but I am going to have to try that!!!!! As soon as he wakes up. I feel so bad it hurts him so :(
Thank you so much, Rachel. You are awesome! <3
Try another rolled up towel under the crib sheet just below his feet! That may help with the sliding. A long beach towel would probably work best because it would reach either side of the crib.
DeleteAnd you are so welcome! Glad you took a mall stroll :) We love going early in the mornings before the stores open as well. Olivia thinks she is doing something super special because she gets to run ahead of the stroller. hahaha...so fun.
I'm praying for the little man and for YOU.
XOXO
Ugh I'm so sorry that you guys are having a rough time. You are both in my thoughts and prayers! Hope things get better real soon!!!
ReplyDeleteThank you so much, Sarah! <3
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