Learning to be Lazy - August 11

So I've now got an alarm set on my phone to remind me to post SOMETHING - as much of an update as there is - every Monday. If there are any big pressing updates, I'll post those when they come up but at minimum, I'm shooting for at least weekly updates!

This month was looking to be pretty slow - we only had therapy appointments (all at the house) on the schedule. Then they called to say your new AFOs (Ankle and Foot Orthotic) were ready so we went to get those today - they're so awesome! So much easier to use and much cuter than the cast splints. 

Now we get to add another trip to San Antonio for an ENT follow up because you clearly don't understand the concept of LAZY DAY! Last week Big Big was gone to Grandmother and Granddad's house, I was out of town and Little Big spent some time with Grammie...and you decided to get sick. Daddy and the nurse had to take you to the doctor's office on Thursday and they said you had a cold that looked like it was moving toward upper respiratory infection so they put you on antibiotics to help fight it off. Friday morning (right after Little Big and I were talking about making it a lazy day and staying in our pajamas and watching movies all day...) there was some difficulty with suctioning your secretions so Mama decided to do a trach change in case there was a plug starting to form. So we got everything together for the change, I pulled the old trach....and the new one wouldn't go in. 

In situations like that, you reposition the neck and try again. So we did. Still nothing. There was something right passed the entrance to the stoma that was NOT letting the new trach in. We tried 4 different trachs the same size and then moved to the trachs that are a size smaller. No luck. After nine attempts (aka - nine trachs Mama had to spend the next two days cleaning and sterilizing) we decided it was about time to call the ambulance. They transported us to the ER here in NB, where they are thoroughly unequipped to deal with pediatric cases...especially trach/vent cases. The ER doctor said he would fell much more comfortable sending us to the facility where the operation was done...so we went to San Antonio. Once we got to San Antonio we got to see some old friends, (again, if you want to visit we can just go visit...it doesn't have to be through the ER) and while they were trying to figure out what to do you started getting cranky because you missed your morning nap.

Not because you didn't have a trach.

Not because you didn't have a ventilator.

Not because people kept poking your neck with tiny objects.

Because you were tired.

You were off the vent, with no trach, for almost four and a half hours and did amazingly well. When we found out they were taking us to SA I called your ENT to see if there was anyway she could meet us there since it was her day off. She called me about five minutes after I left a message and her first question was "How are they ventilating her?"
"They're not. She's breathing completely on her own."
"And her sats (oxygen saturation) are ok?"
"99-100%"
"Oh. Ok then."

Which for me proves that 1) she doesn't need the vent during the day, when she's awake. 2) she's still an awesome baby. The next step would have been to start weaning her off of the vent during the day time, but maybe this will help speed up the process :) You would still need it at night until they figure out the apnea issue (which would require getting legitimate, not confusing, actually conclusive sleep study results) but during the day...

Anyway, the ENT on duty was able to use intubation tubing starting at a size 2.0 then slowly work up (2.5, 3.0...) until he got to 4.5 in order to get your 4.0 trach back in. Unfortunately, our only option is not the same style of trach that works best for you (they only had standard, not the flex tend), and we're stuck with it until Thursday when we can follow up with your ENT. The standard one is really irritating for your neck and greatly limits your mobility because every time you move it tries to come off. BUT we survived. You are now re-trached and back on the vent and we are waiting patiently to find out WHAT HAPPENED!?!?!?!

Saturday you had a bit of a fever so you didn't get to join us for dinner at Papa and Mimi's, but Grammie came by the house to see you - and couldn't believe how much you've grown! She doesn't get to see you much because she's only able to get to services on Wednesday nights and you usually only get to go on Sunday mornings.

So yeah - you've got a lot to learn...mostly what lazy day means... And I can't wait to see you continue to grow and learn! Love you Baby Girl!