Yo soy La Lay

adventures in family, faith, and Down syndrome

Upward movement

In the Hunger Games of pinkeye, I am still winning.

However, much to the delight of my husband, I woke up this morning without a voice. Not just a little hoarseness… this is full-on, my-lips-are-moving-but-no-sound-comes-out laryngitis. So that’s fun.

I spent my day with Tessa as usual, while The Pinkeye Crew hung out at my mom’s house. John is the only one who is still technically contagious, but I’m trying not to take too many chances and am staying away as much as I can!

At the hospital, Tessa was much more herself. She was ready to talk and play and roll onto her belly… The wires weren’t quite ready for that rolling, but she was pretty amused by the tangled mess that she could create. While her personality is slow to emerge, we already feel like she might be very social and a bit dramatic. This morning, if I wasn’t standing where she could see me, she complained until I came back into sight. High maintenance. At least she’s feeling better!!

I am super thankful today for the company of one of my dearest friends, Ashley. She and I got through our first year of teaching together and have remained friends since then. Tessa adores her and so does the rest of my family! Not only did she come to see me and the girls, but once Ellie went home for a nap and Tessa was calm in her bed, Ashley took me out for a margarita. It was a much needed break!! And while it must have been hard for her to hear what I was saying 96% of the time, she’s a great conversationalist and it’s nice to have someone to vent to.

As far as an update on Tessa, she’s making upward progress! When I went back tonight to kiss her goodnight, she was on the regular flow oxygen! That’s the last level to clear before she won’t need it anymore. They took out her NG tube (feeding tube) this morning. Most importantly, her status was downgraded tonight to a regular pediatrics patient instead of a PICU (intensive care) patient. Yay!! The means she lost a couple more wires and is starting to require less monitoring. Great progress for one day!!

20140503-211150.jpg

20140503-211216.jpg

1 Comment »

Breaking News!

In case you didn’t know… We got the results back from the virus panel to explain what horrific disease has caused this hospital experience. Turns out it’s a rhinovirus, AKA the common cold.

I’ll never be able to look at a snotty nosed kid on the playground with my child the same way ever again.

2 Comments »

The S*** Show

John says I shouldn’t swear on this blog. I’m not sure why… I’m not one to curse much in life anyway, but really, this week has earned a few choice words. I think you all understand if I call it sh***y, right? That’s a good compromise. 😉

We had a particularly unpleasant night with Ellie; one that involved a LOT of crying and smacks in the nose (from her to us!!) to avoid drops. We think they were accidental smacks… But she might have us all fooled.

Today I returned to work. We have been staying with my parents, as they live two minutes from Tessa’s hospital and we live 45 minutes away. So my usual 15-minute commute would instead be an hour. I was up, showered, ready. John wandered in with a scowl on his face.

Me: Rough night, man. Those drops are brutal.
Him: Yeah. Look at my eyes.
Me: You look exhausted! It’s only 5:30, go back to sleep!
Him: Maggie! Look. At. My. Eyes.
Me: S***.

Pink.

Cross another person off the list of helpers.

You know that feeling when someone sneezes on you and every tickle in your throat becomes an “oh my God, this is it, I’m getting the bug!” reaction? That has been me. All. Day. My eyes, which are white as white can be, albeit a little dry from the hospital air, literally tingle. It’s coming for me…

At least Tessa has had a good day. We’ve been lowered to a high-flow cannula rather than the Bubble CPAP. She took four ounces in a bottle and had a nice little bath. I’m here with her now, though I’m not touching her for fear of spreading The Disease. She is a sweet little peanut!!

20140502-153619.jpg

6 Comments »

PICU Day 2

We came in this morning to an angry baby.

Tessa basically has two cries – a weak, pitiful, won’t-you-please-make-me-happy sob and a full on, all-Hell-has-broken-loose scream. We were greeted with the latter today.

When we saw her, she stopped, smiled, and then started up again. The good news is that because of this (and because our room is directly outside of the nurse’s station and everyone was tired of enjoying her anger) they let us hold her.

20140501-100042.jpg

We also got to feed her a bottle because we thought she was sick of having an empty tummy. Just two ounces (and two great burps!) and she was exhausted, but content.

A little bit of normalcy. 🙂

This morning, they set her oxygen back up to 30%. The goal is to get it down to 21% on the CPAP so that we can start weaning from it and get her onto the high-flow oxygen cannula. There are three levels of oxygen input – four if you include total intubation – and CPAP is the highest that we are dealing with. It forces the lungs open more than the other types. Since she’s working so hard to breathe, the extra force of the CPAP is needed for now, but the oxygen need going up a little is a minor setback. The nurse says it’s pretty insignificant and we’re trying to see it that way as well. As the doctor reminded us today, this is just going to take time. A week? Maybe longer? We don’t know.

Ellie’s pink eye is improving. She hates the drops. Even my assurances that Doc McStuffins herself called me today to recommend them to help her feel better weren’t helpful. My next step is to put on a Doc McStuffins costume and convince her that way. Not really… But sometimes desperate times call for desperate measures. 🙂

9 Comments »