Home is where the spiders and ants are

I'm sitting here watching this HUGE spider crawling on the outside of our back glass doors, trying not to be too squeamish. I'm actually a little nauseous thinking about it getting into the house. ugh. But, apparently I've passed on my hatred/fear of spiders onto Toser and he seems to be a bit of a sissy around bugs. Not that I want him being buddies with creatures, but he squeals every time he sees a creepy crawly and that might be a little embarrassing for him later in life. ahem. It's hard to find a balance between being neat and tidy and scared to death of spiders and raise a son around so much nature. Last week he fell into the creek behind our house, got a little muddy and was devastated. I told him it was okay, boys are supposed to get muddy, and now it's become his mantra. He keeps telling me boys are supposed to get muddy and every time he says it I think, "Omigosh, my carpets are white. He's going to ruin our house because I'm trying to make him 'manly.'" Add all this to the ant infestation in our kitchen and I'm a little on edge about the mud and bugs. At least the hospital was sterile and bug-free.

So, we're finally getting back to normal. Tater is thriving. All he wanted to do the first 2 days we were home was sleep. The third day I decided he could catch up on sleep later and he needed to start living life so we got him up and we've been toting him and his gear around the house since. He definitely doesn't travel light so it's not a piece of cake; every where Tater goes so does the vent, the emergency go-bag and the suction machine that sounds like a weed eater. We have 2 nurses, 16 hrs/day for 4 days/week. This helps out a lot when it's time to feed Tater or do his breathing treatments and Toser is needing some attention. Mr. Awesome went back to work last Wednesday and while I COULD do all this myself, I could also DECLARE MYSELF CRAZY and become a drunk. So I'm grateful for the help and the extra time I'm getting to spend with the Toser. We've had a few rookie mistakes but all in all we're doing well and settling into our new normal (man-that normal keeps changing).

Time for Tater to get a breathing treatment. And Toser to eat lunch. We don't have a nurse today so I have to divide myself into 2 to get anything done. Thank God for Steak Out.

LJ aka Lily is here!

Our really good friends, CC and TC, welcomed little baby Lily yesterday! This little girl is up for some major spoilage because CC and TC have had a 3 year start on my kids and I'm all about the payback. It might help that she is SO CUTE. And is new and fresh and my mouth might have been watering when I was holding her. Mr. Awesome is all, "No way are we having another one," but we'll see. You cannot hold something as precious as Lily and not want another. And I can't even begin to tell you how precious she is. Awww! I might have to bring her home with me.

Congratulations CC and TC! We know you'll be the best parents and we love all three of you very much. Aunt H & Uncle M be on guard because our dinner dates are about to become play dates (as if they weren't already).

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!

Never gonna give you up

This video cracks me up. How can a guy with such a deep voice have such little rhythm?

It was an off day for class but very busy with doctors and therapies. I promise I will update about what we've been doing soon. Everything is going really well and we should be going home on the 14th!