Who's ready to go home?

We are!! I think each person in our family has reached his or her personal limit and is about to blow (well, except Tater who thinks every day is a party-poor kid is going to have the hardest time adjusting at home without all the nurses and RTs and doctors in his face telling him how cute he is). I'm usually pretty tolerant of the staff but even I'm getting frustrated with them now. We're supposed to be rooming-in and taking care of everything for ourselves but we have to ask for Tater's formula, meds, etc. And then they come in to "see if we need anything" if we haven't asked for whatever when they think we should have. I will be ready to be fully "in charge" at our own house. I know it's going to be exhausting and frustrating at times but we'll be home!!!

One of the many things we've been trying to do while we've been here is to get Medicaid for Tater. We have great insurance but the copays and the 20% we pay on numerous outpatient procedures and equipment are stretching already tight finances a bit. Tater qualifies for Medicaid because he has a "disability," and it's been a PROCESS to say the least-very frustrating. I was told it could take until July to actually get Medicaid so we resigned ourselves to waiting. LOOOOONG story short (imagine me, short) Tater has had Medicaid since April 1st and I found out through a fluke on Friday. No one told us he had gotten it and who knows when we would have found out otherwise. I'm still very frustrated with the whole process but my new mantra has become, "play the games to get the prize." The prize in this case being Medicaid. There are several other games I'm in the process of playing so if you catch me on a day I've been playing one of those, please forgive my bluntness and bitterness. :)

The great thing about Medicaid is private duty nursing (PDN). Our insurance does not pay for PDN but Medicaid does. And we can't leave Tater with anyone who doesn't know the ins and outs of trach care/changes and ventilators-literally. Not even for a minute. That means we were pretty much looking at a life of constant trach and ventilation, all the time. We love our kids like nobody's business, but the thought of never getting a moment alone was not adding to our excitement of going home. We're not ones to go out all the time but we do like to get away from the boys for a break every once in a blue moon. And while PDN has many flaws and we'll have to train most of the nurses in using Tater's vent, we'll at least have some opportunity to get out of the house sans all the equipment. You'll just have to forgive me in the future when I'm complaining about how horrible all the PDN nurses are and how we can't trust any of them-I'm still in the idealistic phase of all this.

We bust out of here tomorrow (Monday) afternoon. And not a moment too soon. We've had a good experience here but will not miss this place AT ALL. It may be a few days before I get a chance to post again. Our plan is to get home and be a family of four for a few days before the real world comes rushing back. Please forgive us if we don't answer the phone or emails-we'll just be busy living life at home in our PJs.

Rooming-In

Everything we've learned the last few weeks has led up to today... Today we loaded up Tater, his ventilator, his portable suction, oxygen, oximeter and go bag and went to the Birmingham Zoo as our out-of-house transport with the home vent program nurse, respiratory therapist and social worker. We did all this to prove that we can load Tater and his stuff and make it out in the real world. And we passed! Tater didn't dig being at the zoo, but we PASSED! No more teaching or classes, no more getting checked off on trach changes and suctioning, no more waiting for the next thing because the next thing is here.

So now we're "rooming-in" with Tater which means we're responsible for every bit of the care he needs. We've been doing this since we got here so it's not a big deal to us to "provide" all of Tater's care. But this means we're so close to going home. Tater's discharge date is Monday and we CANNOT wait!

This last week has been crazy with the learnin' of stuff and wrappin' up of things and I have so much I want to post about but right now I'm going to sit here with Tater and snuggle. (oh- and I've uploaded some new pics to: http://picasaweb.google.com/tosertater/ToserAndTaterBdayPics)

Happy Birthday Toser!!!!

Toser is 3!!! His birthday was Sunday! And I literally just got a chance to sit down and write about it... Saturday, we brought Toser to Birmingham to spend the night and he was so excited to be in "Burmigham." He was very grateful the entire time, continuously saying, "Oh Tank you," and was perfect during breakfast at The Pancake House on Sunday. We had plans to take him to Thomas and Friends at the Heart of Dixie Railroad Museum but they had storm damage and all Thomas train rides for the weekend were cancelled. I was crushed. Toser didn't know we were planning on taking him so he was fine but I don't think I've recovered from the disappointment. I really wanted to do something special for him and this would have been perfect. :(

But all is well. We took him to the McWane Center here in Birmingham as a plan B (this was plan B because the Bird Family gave us gift certificates to the McWane Center-thanks so much Bird Family!). Toser had an absolute blast. He wore us out and had fun and was perfect the entire day. He did freak out a bit at how LOUD the IMAX dinosaur movie was but recovered from that and ended up eating popcorn and being fascinated by the dinos. I'm serious when I say he was perfect. We went to a little dive for lunch and had to wait 20 minutes for food and although Toser was starving and tired he never once got whiny and impatient. He stayed that way while we were at the McWane Center and until we got back to the hospital where Manny was waiting to take him back home.

Toser has grown so much the last 2 months and I'm very sad I've missed it. He's gone from being 2 in every sense of the word to being a grateful, polite social butterfly. When Tater went into the hospital, we couldn't get Toser to say hi to people he didn't know well and now he'll talk to anyone. Last Friday the vent program staff went to our house for a home inspection visit to make sure we didn't have lead paint peeling off the walls and had adequate space for the vent and supplies. As soon as they walked through the door, Toser was trying to get them to go upstairs to see his room and his ride on Thomas train. Mr. Awesome and I just stood there with our mouths open because we couldn't believe how talkative he was being. And he was that way Sunday at the hospital, telling everyone who wished him a Happy Birthday, "Tank you." I'm sure we'll all "get back to normal" when we get back to normal but it was great to have this weekend and see the new Toser.

I attribute the "new" Toser to the family that has stepped in and taken care of him. Everyone has such different, wonderful ways of taking care of him and he's flourished with the diversity. He's definitely learned to roll with the punches and I know he's a better kid because of it. And he became a social butterfly because each one of his aunts is one in their own way and he really had no choice. We love you Toser. You make our lives rich with experience and fun with wonder. You're a great kid!