Familiar Strangers........

MFH and I arrived at the hospital yesterday afternoon, totally prepared to get our learn on. We were supposed to be taught and quizzed on all aspects of the ventilator. Without looking, what does this beep mean, and what do you do if you hear it?  And learning exactly how to pull up the last twelve hours worth of events from the machine's database. When they told us that this program would be insanely knowledgeable, they weren't kidding. We don't just know how to program and prime Little Bird's feeding pump. We now know how to utilize four different brands and models of this device. Just in case. We don't just know how to suction her with an in-line catheter. We can also do it manually, with sterile technique, as well. Just in case. We didn't just learn CPR. We can now tag-team her to prevent exhaustion upon one caregiver, and for a prolonged period of time in the event of an emergency. Just in case. They are very thorough, and extremely meticulous about this instruction. Even though they've told us, time and again, how much they're going to miss her, they don't want to see her back in their unit, and neither do we. 

When we got there, we walked into chaos. It was obvious that the staff was having an extremely busy day. Our nurse, Amanda, didn't even eat lunch. She was simply relieved to have a co-worker approach her and ask her if she wanted anything to drink from the cafe downstairs. Yeah. That kind of busy. You'd think that amidst all the calamity, Little Bird would have been forgotten about, but she certainly wasn't. She was chilling in her crib, watching Elmo, and wanting for nothing when we walked in. I can't believe I'm about to outwardly admit this, but I'm going to miss them, too. It's been nearly two months since we've come here, hoping for help beyond the dreaded phrase of long-term care. We've made a lot of friends in that short amount of time. 

Amanda apologized for being unavailable, and so did our respiratory team. But it really wasn't a big deal. We got extra time to hang out with Little Bird and play. She's still on the antibiotics, but she's not quite a hundred percent yet. The IV line in her foot wasn't holding up very well, and so they opted to run a scalp line instead. As soon as I saw it, I became weary about approaching her. She can be a little tyrant, and I assumed after that, she would be. But she was in a pretty good mood, regardless. She was a bit tired. All of the activity on the floor combined with the nosiest little busy body in the whole wide world kept her focused on each person who passed her room. She refused to sleep until MFH picked her up, and then, she was out like a light. 

Nothin' But Cheeks!

"Ahhh yeah, baby!"

Growing Like A Weed

"Don't move! I'll be right back!"

She Takes Her Sleep Very Seriously

Can You Believe This Is The Same Baby?

Planning The Big Day

"Stop laughing at my hair, Mom! It's not funny!"

The day wasn't a total, educationally productive loss. I got a chance to catch up on paperwork while she and MFH bonded. I'd been walking around the last week or so saying, "Oh, it's fine, we still have X amount of days left, yet...", but it wasn't until this when I realized that we really don't. It's coming, and it's coming quickly. This Wednesday is our next, scheduled team meeting. A progress check, to see where we stand. And just as I was about to panic...

Amanda came in to observe us completing trach care. As we were in the process of this, I mentioned to her how new all of this still is to us. This world of tracheostomies and ventilators. Little Bird is our only personal experience with all of it. Amanda began telling us about Clayton, the little boy down the hall. But, she stopped herself and left, as per HIPPA policy. She came back a moment later and continued. Clayton is nine years old. Due to the severity of his scoliosis, he's been vent dependent and trach'd since month two. When Amanda stepped out of our room, it was to ask his grandmother for permission to speak to us about him, as well as invite us to meet him. 

On our way out to head home, we swung by Clayton's room. Isn't it funny how God knows exactly who to introduce us to and when? Meeting this family was such...an honor. It really was. Their presence was immediately inspiring. This morning, Clayton underwent major spinal surgery, but you'd never know it by seeing him, or listening to him flirt with his nurses. His grandmother tried to explain to us how they've handled different aspects of Clayton's medical needs, but this little man finished every sentence she started. He even removed his passy valve and showed it to me himself, before displaying how he pops it back into the circuit joint, and goes about his business. His grandmother also told us all about how he helps her change his trach piece, and he nodded in agreement, so absolutely sure of his abilities. Clayton. Who is only nine years old. In a halo, and on a ventilator. Who is afraid of nothing. Clayton. Is. Ah-mazing.

And as I shook his grandmother's hand, and sincerely thanked her for taking the time out of her extremely busy day to speak to us, she squeezed mine. And she told me, "Don't be afraid. It's not the end of the world. When it's time for you to leave, if you're worried about anything, you just tell those nurses. They won't send you out of here until you're good and ready to go". She warned us both, "Make sure you're ready. Make sure you're comfortable. Don't worry about the dates on a calender. You'll know when you're ready." Have you ever met someone, and instantly felt like you've known them forever? Yeah. It was like that. I could have cried, right then and there. 

I'm taking her advice to heart. So far, MFH and I both feel pretty confident in what we know. But there is still more to learn, and to do. If by, the night before we're to be released, we feel the need to review anything one more time, we are going to. According to the calender, we'll actually have two spare days to consider this. Perhaps our team scheduled everything on purpose. Either way, it's good to know, and even better to feel.
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