Miss Lydia Rose: January 2017

Friday, January 27, 2017

Just leaving this here for you to enjoy.

Tuesday, January 24, 2017

Knock on Wood....Lydia is well!

It took 10 days, but I think we are over it! Lydia had a really good night with no temperature, no Tylenol or ibuprofen and no oxygen. She was even able to keep 2 full blended meals down at 8pm and 12am. Oh and no albuterol or qvar inhalers since Monday evening. This is huge!

It's been a really long 10 days. I'm sure it's a long 10 days when any kiddo is sick and snotty, but add all the extra drama and it wipes a mom and dad out. And her sickness came on top of a week with no nursing, so we were already juggling schedules for 4 days. Wiped me out and got me and my mom sick. I'm recovering well in about 1/2 the time Lydia did. Dad is still holding out as the healthy one!

So happy to be able to store the oxygen away and resume life as we know it.

Saturday, January 14, 2017

102.7 degrees and updates

"A fever is an expression of inner rage." ~Julia Roberts

...Lydia was raging last night!

Poor sweet girl couldn't keep her blends down yesterday morning, so we switched to pedialyte and that helped. We'll slowly reintroduce blends today and, if tolerated, will be on full blends again by tomorrow.

She spiked a 102.7 degree temperature by 3:00pm and we got it down to 98.4 degrees by this morning. I called the Home Vent team a couple of times yesterday so they confirm the things we were already doing for her.

Lydia slept from 2:30pm Friday afternoon to 7:30am Saturday morning, with about 1 hour of awake time sprinkled in. Dan and I were up every hour on the hour checking on sleeping beauty.

She did need supplemental oxygen last night, only 1 to 1.5 liters and she was weaning off of it this morning. We also have been giving albuterol treatments every 4 hours.

She sure tried to play hard when she was awake from about 8:00 to 8:30 last night...and with a smile. Didn't get much fun in before she wanted to read books with mommy and fell asleep on Daddy's lap.

UPDATE: Lydia has not had a fever over 99 degrees since this morning! She is tolerating partial bottles of blended food. She's tolerating the remainder of her volume in Pedialyte. She's not overly congested at all which is great from a trach standpoint. She's sleeping soundly right now and it's only on 1/4 liter of oxygen. Wuhoo!!!

UPDATE: Lydia's Saturday was great, Sunday was okay. Sunday night was rough and she slept in til 11:00am. Lots of dry coughing, which is tough on her with the trach. Imagine your snot and phlegm when you are sick, she has to clear that through a tiny tube in her throat. Still no fever since early Saturday morning. Went to CMH for our January Synagis shot yesterday. I think she's on the mend.

Thursday, January 12, 2017

A week at home with Mom, Dad and Mama

Lydia's nurse was under the weather this week, so the 3 of us juggled schedules and hung out with Lydia a lot. We stayed home, played outside, took a walk, went to the doctor, ran errands, went to the library, and had a great time doing it all. Here is just some of the fun we all had! One more day of schedule juggling and then a long weekend at home!