Wednesday, September 17, 2008

Post hospital rambling and a learning experience for Mommy.

As I was saying before, what a difference this hospitalization was for us. TJ & Mommy both. I felt different throughout the whole thing. Even the phone call didn't set my heart into panic mode. It was just kinda matter of fact, deal with it, come home. That's exactly what happened.

TJ was a bear for most of the time, he didn't want to be there at all and made it very known to all that came near. He didn't want to be there and he didn't like anyone. He looked at a nurse drawing blood and in a tearful hurt voice told her "You make me Sad." I don't know who was more sad at that moment, TJ or the nurse. She felt really bad, but it's what we have to do.

He'll eventually learn that certain things have to be done and to grin and bear it. It sucks, really, but he's alive and living life and enjoying so manythings, it makes it all worthwhile.

I see other patients who have so many complications and medicines and tubes and devices hooked up to them. I thank God everytime I see them. No, I wouldn't have chosen this road for us or for TJ, but at least I have a relatively healthy child who can run around and play most of the time. There are so many kids out there who will live a lifetime from a wheelchair or with a ventilator hooked up to their throat. How can I complain about our life?

The steroids they gave him to combat the rejection make him HYPER! I mean can't keep up with him, bouncing off the wall, can't focus, grabbing things quicker than you can blink, and crying or screaming for no apparant reason HYPER. Seriously, I was at my end yesterday afternoon. He was nuts.

Today he's much calmer and is actually able to sit and play and be calm. He seems much happier, so therefore so is mommy :)

I had a horrifying moment yesterday, I'm still horrified by it. You know that saying "Kids will put anything they can in their mouth," well TJ hasn't done that for a while, until yesterday.

Now remember he's on a immuno-supressant to keep his immune system compromised so he won't reject. This means we have to always wash hands, use sanitizer, not touch our face... blah, blah, blah. HA Try to do all that with a toddler! You can see where this is going right?

So we're at the checkout line of the grocery store, I have emptied the cart and placed the "Place Between Orders" stick at the end of my groceries so the next person can start unloading. I reach/lean around TJ, who is sitting in the front of the cart, grab my wallet and when I stand back up I see that he has...

the "Place between orders' stick - IN HIS MOUTH!!!!! pretending it's a bone. BLAHH!!!!

*cue sirens and flashing red lights*

I freak out and my first and foremost thought is "Oh Shit, I can't sanitize his mouth, what the hell am I supposed to do."

I'm imagining germs and bacteria crawling all over his mouth, bleck! What the hell was he thinking. The cashier is looking at me like I'm nuts. Truth be told, I probably looked a little nuts.

So I'm on watch for the next 3 days. I'm praying he didn't actually "lick" the damn thing. I keep thinking about the raw chicken juice and all the other bacteria ridden food things that sit on that grocery belt. *Shudder* That stick touches all of that and how many hands. Even if he WASN'T immuno-compromised I think I would be freaking out, it's so gross.

I don't know what he was thinking, well I know he was pretending it was a bone, so probably he was thinking "I'm a Dog." But that doesn't help the situation.

So lessons learned.

1. Steroid jacked children are very quick
2. Never underestimate a 3 year olds randomness
3. Add Scope to the "on the go" bag

Sunday, September 14, 2008

A step back in time

We're back at the hospital. TJ was having a pretty bad rejection, so in we came for steroid treatments.

This time around is so very different. In the past TJ has always been the life of the floor. He was always out of bed and chasing after his favorite nurse or doctor. THis time not at all. He is really upset about being back in the hospital. He doesn't want to see any nurse or doctor. In fact he tells them to "Get Out, Please" at least he's polite about it.

Being paged and interrupted, so I guess I'll try to finish this later.

Thursday, September 11, 2008

I'm a Piano Teacher!

I've been saying it but I mean it for real. I have students and I really am a Piano Teacher! I'm not just a Mommy, although that's a great thing to be. I'm not just a wife, although that too is a great thing to be. I'm a Piano Teacher, I'm Lori, and I am finally reconnecting to a piece of me that has been lost.

It's been so long since I've taught. Last December TJ was so sick that I was cancelling at least 1 night every week and we were in the hospital December 18th - 22nd. It didn't leave a lot of time to see students.

So finally after 9 months, I'm finally starting to teach again. My first night was Tuesday and it felt so good. It felt natural and it felt right. I had started questioning if I should pursue teaching again or if I should try to find some retail store to hire me. This left me without a doubt, I am a teacher. I've always felt like a teacher, I've always acted as a teacher, and I'm not turning my back on it.

The last 3 years of my life have been so much about TJ. Even before he was sick my life seemed to revolve around him. WHen he started daycare and I had a full teaching schedule I was happier than I'd been for a while. I had time and I had ME back.

After transplant Daycare became an impossiblity and my life's focus became TJ and making sure I did EVERYTHING to keep him healthy. I couldn't even fathom the thought that I could lose my son. My life was him.

Now he's doing better, he's stronger than he's been in over a year and Randy & I finally feel good about me teaching adn being out of the house.

Can I tell you, driving in my car without the distraction of a 3 year old in the back seat is an experience I haven't had it a while. It was weird. I'm so used to the rear view mirror being adjusted down so I can see him, suddenly I can see my whole back window.

I did experience a slight euphoria of freedom on that drive to my students. It was empowering and freeing. I was able to breathe and relax in a way I haven't in a long time. My Time. I don't have that in my day to day life, unless I stay up until 1 AM to get it. No wonder I'm tired every morning

I teach again tonight and I'm really looking forward to it. It's finally a creative outlet for me. I feel like a bad person because after all TJ's been through I want time away from him, but I also think it is healthy for me to have time away from him. The two of us spend 24/7 with each other, he's sick of me too!

I have a piece of me back. It feels good to reconnect with that piece, it's been missing. Now if we can just get to our house! Our environment and life just doesn't reflect who we are. It's OK to visit that for a while, but it's a strain to live in surroundings that don't fit you. It's been a strain for almost a year now. I will be so happy to have TJ, Randy, my teaching, and a home that belongs to us. I keep saying it's coming, it's coming. One more step...

Monday, September 8, 2008

The new normal?

It's funny how things end up being normal. They aren't the same as they used to be, they may not even be "right", but if it stays the same long enough we accept. We adapt, we move on.

TJ is still doing really well. His LFT's are still high, but funny, I'm not even alarmed anymore. The nurse gives me the blood results and I'm like yeah, yeah, yeah, they've been that high for a month. Whatever.

WHATEVER!!!???!!! Is that really my thought. Yes. Yes, it is really my thought. A month ago I was freaking out, now it's just normal. It amazes how messed up our blood work and tests can be but yet, we feel fine and would never know something was off.

We are having more blood work. Every 3 - 4 days we have to go in and stuck for a vial or 2 of blood. His immuno-suppressant level is off. I think because he's grown so much and because his belly is getting better. Having diarrhea will cause this level to go up, his diarrhea is finally easing up and going away. I think that's causing it to drop.

So in at 8 AM for blood work, TJ LOVES that! Not! I'm hoping the increases they're making in his dose will bring it enough and stabilize so we can go back to just once a week and then maybe back to the 3 weeks. That was nice, I felt like a regular person with a regular kid when we were doing that.

We had a GREAT Weekend, I mean great. TJ's uncle put together a huge fundraiser up in Erie Pa. It was a casino night, black jack, roulette, scratch tickets, Chinese auction... Lots of fun. They talked to a local Band - The M-80's, and they volunteered to play for the event.

Well, not only did The M-80's play, they were pushing the event at all their other gigs. They also were taking up a collection at these other gigs too. The band presented us with a big check, literally a big cardboard check at the beginning of the night and had 2 TV crews there too.

TJ made himself right at home with these men and it warmed my heart to see them taking him under their wings and giving him the time of his life. What would be the time of his life?

He lived it up like a Rock Star!

The band let him up on the stage with them and allowed him to play their instruments with them. It was so good to see TJ doing all of this and enjoying himself so much. I can tell you I now have a very soft spot for those men, they gave TJ a night we never could.

He loved the Drums the most, but took a turn on the guitars and piano too. The piano were 2 stacked keyboards and I'm proud to say he took a second spin on them. He had a really good time and the crowd loved it. I don't know how many pictures of my child are now out there in the world, but I can tell you as he was at the mike and guitars the phones were open and everyone was a clicking.

Drums, that's just what I as a classical pianist wanted my child to take up! *Snort*
Of course this is where the Drum Major in me kicks in and is hooting, Drum Cadences RULE!