Covering All The Bases (Tentatvive Date Of Discharge: Round Two!)........

This afternoon, we had a meeting with our discharge team. And this time 'round, we made sure to cover every base. The plan that we came up with it's kind of confusing, but that's a good thing. Because Little Bird has decided to take charge of everything, and once again, we follow her lead. 

"Mom! I told you! I not finished growing dem yet!"

 

Since she's been making such tremendous and unexpected progress regarding the vent, her pulmonologist feels that she is ready for something more. As I type this, she is in the midst of a twenty four hour trial of breathing on her own. She's been sailing right thru her nap times, of up to three hours, unassisted while she sleeps, with no monitor violations. So they've decided to go ahead now, while she's still inpatient, and see how she does with this throughout the night. It doesn't necessarily mean that it will happen. But, it might. And since we're already waiting on our in-home nursing team to coordinate a schedule, why not give it a shot? 

"I isn't gunna smile for you!"

"But I will strike a pose!"

If she does happen to successfully accomplish this tonight, she'll do the same tomorrow night. And the night after. And the night after that. So long as she doesn't have a problem with it. She'll also undergo another chest x-ray tomorrow morning, to check for any signs of wear and tear on her lungs and airway that this can cause. If there isn't any, and if she manages to pull off seven consecutive nights, then we will be released to come without the ventilator. I know, right? Since she was trach'd back in October, I never once thought this would be a possibility. Hell, I never thought we'd be released with her breathing twelve hours by herself. Even if that's all she can manage right now, then so be it. She doesn't owe me anything. Not even an explanation. 

Ooooh! Sooooo close!

And she shut me down!

This also plays a factor in her date of discharge. Because if she's to come home without the vent, it means she can essentially come home a week sooner than scheduled. It takes a while for the home supply company to receive approval from the insurance carrier, order the equipment, and have it delivered. And not many of them keep this machinery on hand due to the cost. But if we won't be needing it, that will clear up a lot of free time on the calender. 

However, if she does need the vent during bedtime? Then she'll be released from the hospital, for the very first time, on her first birthday. Funny how things come full circle, isn't it? If you would have told me, upon the moment of her birth, that we'd be bringing her home in exactly one year? I'd have never believed it. And what better a gift can we give her than freedom? So, upon hearing the details, her nursing team has declared that her birthday party will be Sunday, July 8th, at the PICU. For how excited they, and we, are for this, it is already so bittersweet. And we've been warned. Not a lot of staff is going to make themselves available on the day she does come home. Because not very many of them can handle having to say goodbye to her. But we promised them that this is not goodbye. It is very much "see you later!"

"Make mine a double triple cappuccino mocha latte decaf, with a shot of espresso! No whipped cream, please!"

"I tink I'll keep you, Daddy! You're my favorite!"

Told You She's The Princess Of The PICU!

We also met with the proprietors of the respite care facility that we'd chosen, but subsequently opted out of. Part of MFH and my plan was to make certain that we have a safety net in place for the future. We are not expecting any of this to be a piece of cake, by any means, vent or no vent. TPN or not. On the off chance that we find ourselves in over our heads, it's just something that we felt we needed and was the right thing to do by her. And if we do end up needing them, they'll be but a phone call away. If not? Then so be it. But it never hurts to have backup for your backup. 

That Thing's Gotten Her Thru Many A Rough Night

MFH Is A Binky Stealer!!!

How Little These Feet Once Were...

The rest depends on Little Bird, and what she does next. We were extra cautious not to tire her out before the trial, even though I so badly wanted to put her in her walker and take her for a stroll. Instead, we hung out at her crib, watched Monsters, Inc. for the umpteenth time, and let her chew on us. At one point, she even leaned in to me and slimed my cheek with the best baby kisses ever. Oh! I almost forgot! Her top two front teeth are on the verge of breaking thru any day now! Though, I failed miserably at getting any pics of these. It's been difficult to work a smile out of her when she knows the camera is there. But I will win this little war, one day! In the meantime, I'll continue to impatiently watch the clock before calling the unit and checking on her status in regards to the test. If you're not already on my Facebook page, I suggest you add me, because you'll likely here it there first!

 
share on: facebook