Friday, April 10, 2015

Update On Chloe, The Red Bag, And A Cue From The Kids

That. The red bag. The duffle bag that we pack on the fly for possible last minute KC trips. We've gotten good at packing quickly. Alan headed to bed around nine last night while I stayed up trying to coordinate childcare, packing a bag for Chloe, helping our night nurse pack up the emergency Trach bag/diaper bag/stroller/emergency equipment tote, and finally eating a late dinner and getting to bed at almost midnight, sleeping with one eye open and my phone right by my head incase our nurse called. It was a crazy night as we anticipated that she'd have another blood episode before midnight. And keeping an eye on Chloe, who by now was happy and playing in her crib.

The bag is still sitting there today, as we continue to keep an eye on her. Overall, she had a bit of a restless night, only getting six hours of sleep or less, and now sleeping majority of the day. She's so tired that her heartrate, which is usually 100's-110's when fast asleep is actually in the 88-98 range today. It's a bit low, and for that we continue to keep watching her because a sign of something up with her heart would be lower heart rate at times. But thankfully when she does stir, she pops back up to 120's-140's. In other words, she's just. that. tired. today.

We talked with her KC doctors, and they believe it could be in part due to her Prilosec for acid reflux not being enough of a dose now that she's grown (again!), the fact that she's getting her two daily doses of Prilosec too close together, along with this blockage having issues. They told us to try the Prilosec for a few days and that as long as we're not seeing more fresh blood or a lot of blood, that the little bit we are seeing is actually ok for a couple of days. So we wait, watch, and hope she continues to do OK until they see her Monday at her already schedule appointment. We're wondering if perhaps she's outgrown her Fundo procedure she had at 3 months, or if her hernia is back that was fixed with the Fundo surgery. We'll be chatting it up with her KC docs this coming week to see what we need to check before she has her heart cath coming up.

It was definitely a scare last night. It's like this with our ornery little peanut.


So we breathe that she's ok right now, we continue on regiment of 1/2 Pedialyte & 1/2 formula. We continue her Miralax. We watch her diapers, her secretions, her spit up for blood. But she's a happy baby now, kicking and playing, and weighing in today at 16.75 pounds.

And after the week we've had, we're declaring a staycation. Alan had his day out today, I get mine tomorrow. We honestly can't remember the last time either of us had an entire day out to ourselves. We took the cue from our kiddos...

Chloe thinks we should relax...

Isaac is teaching us to take a break and do something we enjoy. 

And Abi...

Well, our sweet middle child had a rough day too. We all did. It included rocking her and cuddling, playing, tickling, and even an attempt at a mid-afternoon movie to cheer this one up, but ultimately... wasn't something that the last drop of mommy's coffee couldn't fix. 

We soldier on. 








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