Wednesday, July 30, 2008

Feeling Stagnant


Our house is pretty much done, we've been moving little things in and switching over our address. It looks amazing, Randy really has done an amazing job.

There are so many things that I feel are up in limbo until we are actually finished. My job for one, my life for another, even TJ's life. There are things I find myself daily saying, when we get into our new house "____" will be different. I've been saying this all summer.

Where we've been just isn't big enough or allow us the living set up we need. TJ has no where to run or play in the house, and outside the yard isn't the best for a toddler.

TJ's been doing OK lately. Still having the poop issues, but that seems to be the story of our lives. They said that this is sometimes a problem with transplant kids, I would never have guessed.

We go for blood work again on tomorrow. Hopefully some things have improved, I'll feel better.

Again a reason why I don't want to start anything new, if TJ gets sick again I'll just have to stop. So much of my emotional state lies with his blood work. If any numbers are off my life spins for a few days. every little fart, cough, and burp is analyzed and I am all touchy about everything.

So there's a ton of things I need to be doing, I just am having a hard time finding my motivation. It's like I'm stuck in mud and can't get any momentum.

I'm trying to get motivated to clean... so far it's not working.

Tuesday, July 22, 2008

Why do I do this to myself?

So TJ has been doing very well lately. I'm still juggling foods and meds, but overall he's doing well.

Why do I google Toddler Heart Transplant? Why do I torment myself? Everything I read tells a sad story of sick children who will have miserable lives. That's soooo not what I want to read.

I still want to believe and live in the fantasy that nothing is the matter, everything is normal. The truth is, nothing will ever be normal again.

I'm struggling with health insurance right now. They've raised our rates. Now I need to figure out how to afford this crappy coverage or find other coverage that won't "pre-Existing" condition him.

I worry about his medicaid. We are so dependent on it. THANK GOD we have it. I'm so terrified there will come a day that we won't be able to afford his medicine. Our insurance sucks that bad.

I googled one other time when TJ was first diagnosed with EBV, I wanted to read about that. No, I guess I really didn't. That was when I realized we'd be dealing with a much worse issue, PTLD. and boy did we deal with that. Of course if you believe what you read on the internet, no one ever survives PTLD. Again. why do I do this?

I'm stressed over our finances. I have to get back to work. There are so many things that I've got to worry about, my head aches. I just want to run and hide. THe worst being, if I make a bad decision, TJ is effected more than us.

I need to go to sleep, morning always brings about a change for me. I'll feel better.

Thursday, July 17, 2008

A tired memory

This exact time last year we were going back to see TJ for the first time after his heart transplant. I gotta tell you. I still can't believe all that has happened. I swear I feel like my life got traded out. This wasn't supposed to be, but at the same time it is.

So many emotions have gone on in me over the last 48 hours. Add PMS to the mixture and I'm a walking nerve.

Tonight we celebrated. I can't stop thinking about our donor family. They didn't celebrate.

I'm tired. I'll need to go to bed here fast. It's funny how your subconscious protects you. Usually I'm a late night blogger. The last few nights I can't keep my eyes open. I think it's my subconscious way of protecting myself. If I'm sleeping I can't dwell on things.

SO on that note, I'm to bed. I will post more on this.

Sunday, July 13, 2008

Sometimes you've got to rest

We were supposed to be up early to make it to a 5K this morning. It was part of the Transplant Games. We didn't make it. It was a harsh night with TJ and I decided at 5AM that he really needed to sleep, not get drug off to a race that really doesn't mean a thing to him.

He's missing Randy, so am I but we've got to get this house done. TJ doesn't understand that Daddy needs to work. He just knows he misses him and wants to see him.

Last night Randy didn't make it home before TJ had to go to bed. Now bed times have begun to be rough for us anyways, but last without Daddy to hug... F O R G E T I T ! ! !

We tried to call him, but guess what, no answer. Leaving a message wasn't going to cut it either. TJ wanted his Daddy now.

I ended up putting him in the car and starting off for our house, this was per TJ's request. He needed to hug Daddy, nothing else was going to do it. He flipped for 45 minutes before I just said eff it, we'll go find him, and into the car we went.

I thought at least the ride will put him to sleep. Nope, this kid was so excited to be going to find his daddy he jabbered the whole time. We eneded up passing Randy his way home so I turned around.

We walked in to Daddy in the kitchen and this kid just melts on him. He misses his Daddy.

He didn't sleep well. I thought all that crying would've put him out, nope. He fell asleep around 11:30, was back up at 1:00 AM, needing to see Daddy, 2:00 AM and one last time at 2:30AM. It was at that point I kinda knew we weren't going to make it to the race. WHen my alarm went off at 5:00 AM, I said the heck with it, my child needs rest. I couldn't even imagine what he would've been like today if we had got him up.

So tomorrow is Track & Field. We need ot be at CMU at 8:45 AM. Hopefully he'll have fun. Hopefully we'll have fun. Hopefully it won't be to hot & humid. Hopefully he won't get sick.

Friday, July 11, 2008

Heart Mother

This is from Shannon Kaiser. Her beautiful daughter has many chronic issues, their life is a daily battle. She speaks true and from the heart. I read these words, today of all days and just cried.

Last year on July 11, TJ received his Berlin Heart. It was a turning point for him. It was the beginning of his recovery.

I'm sharing her words, I hope she doesn't mind. I've made some changes to fit our situation.

One day my world came crashing down, I'll never be the same..
They told me that my child was sick.. I thought, am I to blame?
I don't think I can handle this... I'm really not that strong..
It seemed my heart was breaking.. As, I'd loved him for so long.
I will not give up on this child.. despite your best "advice"..
I will give my child a chance.. No matter what the price..
And I will learn all that I need.. to help my child to thrive...
Yes, even a Tracheostomy.. My child will survive!

And he'll need an experimental heart? And we will need to wait?
Alright God I can do this.. I will not curse our fate.
Night time screams, he wakes me often, It serves as my reminder..
How many parents would welcome that sound? Tomorrow Lord, I will be kinder.
Another angel earns their wings.. and I run to my sleeping child's bed..
I watch him then, for quite awhile.. (I bend down and kiss his head)
Then I cry for the parent's whose lives have been broken.. And I look to You wondering why?
Oh Lord, I just can't know your ways.. No matter how I try.

And yet, I trust You hold his life.. (and guide us through each day)
My mind says savor each moment he's here..But my heart whispers,"Please let him stay".
From... pacing the Intensive Care waiting rooms... to sitting by his hospital bed...
From... wishing for a good nights sleep.. to learning every med...
From... wondering will he be alright? to watching him reach out his hands..
with every smile, my heart just melts.. (despite life's harsh demands)
For all who see that faded line.. I look to them and smile..
You see my child is loved so much.. I would face any trial...

That same scar I trace with my finger.. (It's the door to his beautiful heart)
You must have known how much I'd love him.. (Just as You loved him right from the start)
A heart mom is always a heart mom.. (wise beyond all of her years)
And for those who have angels in heaven.. Our hearts share in all of your tears..
I will always remember.. You chose me for him (and no other)
And I'll always embrace that beautiful day.. When I became a "heart mother".

Last year at this time we were trying to get some sleep. Tomorrow Morning, July 11th is when TJ was placed on the Berlin Heart. It was a 6 hour surgery.

The procedure wasn't as simple as it sounded, it never is. I think about this surgery al the time. I have images in my mind I wish I didn't. I wish I never saw him right after this surgery. I questioned what we were doing. He was so sick, Oh My God, he was so sick. It just hits me from time to time.

Our lives are so frail, we forget it and get wrapped up in the stress of daily life. We have to work to pay the bills. We have to work more to pay for the things we want and need. We have to, We have to, We have to. We say these words all the time.

We don't have to do anything. I think the world needs to stop and breathe. Stop and enjoy, stop and remember.

Tim McGraw sings a song, Live Like You Were Dying:

He said I was in my early forties, with a lot of life before me
And one moment came that stopped me on a dime
I spent most of the next days, looking at the x-rays
Talking bout' the options and talking bout' sweet times.
I asked him when it sank in, that this might really be the real end
How's it hit 'cha when you get that kind of news?
Man what did ya do?
He said

I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin'
And he said some day I hope you get the chance
To live like you were dyin'

He said I was finally the husband, that most the time I wasn't
And I became a friend, a friend would like to have
And all of a sudden goin' fishin, wasn't such an imposition
And I went three times that year I lost my dad
Well I finally read the good book, and I took a good long hard look
At what I'd do if I could do it all again
And then

I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Shu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin'
And he said some day I hope you get the chance
To live like you were dyin'

Like tomorrow was the end
And ya got eternity to think about what to do with it
What should you do with it
What can I do with it
What would I do with it

I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And man I loved deeper
And I spoke sweeter
And I watched an eagle as it was flyin'
And he said some day I hope you get the chance
To live like you were dyin'

I "get"that song. I try to live like that with TJ. Every day cherish, make special memory. I'm not always successful, but I try. Life is what we make of it. If you get lemons, make lemonade.

Positive thoughts are the only thing that gets you through some of this. I've seen nightmarish images, all in the name of medicine. Some have helped, others you wonder.

Life can change in a blink, ask anyone who has ever been in an accident or gotten a "phone call" you know the one you never want to receive. Live your life right and no regrets, Love as much as you can, and if you have kids, hug them often. You'll be happier for it.

Wednesday, July 9, 2008

The tired day went better than expected

With the way I was feeling this morning I thought today would be a downer, I was wrong. We had a good day. We got out of the house and found some excavators to watch. They were supposed to be at our house digging our sewer tap in, but they didn't make it.

TJ's med's all went well and he ate good too, not a bunch of junk. That always makes the medicine and my day better. No diarrhea, no vomit, all good. Tomorrow is a Bactrim day. He hates this medicine and has been known to gag and get sick with it. I strategically dose it. Hopefully I can get it out of the way in the AM so the rest of the day is easy. We'll see how it goes.

The excavator is supposed to be at our house tomorrow. I've got to go up and pay the man and let him in our garage to get stuff. Rumor has it he's going to allow TJ up on his lap to let him "drive" with him. That sounds great doesn't it? You know what's going through my mind? Oh My God, has he been sick lately, did he wash his hands, how many other peopl have used the controls on that machine... these aren't normal thoughts are they? I know they aren't, but I can't help it. We've got to be such germaphobes.

Anti-rejection meds are immuno-suppressants, those drugs significantly affect the immune system. He is highly susceptible to everything and anything. Having him on a strangers lap does not excite me. Who knows wht germs this man is carrying. I know he's doing a nice thing, I know TJ's going to love it, that's why I'm going to let him do it. I'll have the sanitizer on the ready. It's the best we can do.

I need to get pictures while he's up on it, I hope I get some cute ones. I'm wanting to do a letter for his anniversary and include some pics of him, today, healthy. Pictures are an addictive thing, you can never have too many. I love the different effects, the different shots, the artistic, the cute, the emotional. I love pictures.

Tuesday, July 8, 2008

Tired, sucking on coffee

This is a picture of TJ from the 4th. My Sister in Law took it. This is his latest "smile". If you ask him to smile for the camera, this is what you get. He's too funny.

I'm sucking on coffee this morning. Some days, this is one of them, I swear it's the only thing that actually keeps me going. I'm tired. 1 AM medicine doses Suck! It's why I'm exhausted today. I either stay up or I risk missing a dose. I'm ashamed to admit, I've done that.

Thank God it's only temporary and not a long term thing. I was giving doses at midnight - 2 AM all the time, but lately I've been giving the med early. My body has gotten used to being in bed by midnight.

Unfortunately anytime a dose is added into our day it measn I have to stay up and give a late dose of something. Last night was one of those nights. This morning I'm dragging.

I walked last night and pushed TJ in his stroller. I really walked, like sweat my ass off and was HOT! I am mean hot, you know that inner radiating heat that comes off you when you're really working. That was me. I feel good today, except for being tired. I have to try and get up there again today and do a double lap. I'm afraid I'm going to die trying. There are some monster hills.

Transplant games coming up. Getting nervous about being at the right places at the right times.

Sunday, July 6, 2008

One of those days

I knew after the foods he ate on the fourth that we'd eventually pay the price. He's been sick 2 days in a row now. He's cranky and all he wants to do is suck on a bottle, which doesn't help his belly one little bit. When I try to tell him this he just freaks out, 2 year olds!

I'm hoping tomorrow will get us back on track. I struggle so much sometimes on what to feed him, what he'll ea, what he wants... Lately all he wants is Ice Cream for breakfast, I just can't do it so our day starts out bad and just carries on from there. I hate that I get so frustrated. I end up yelling at him ,which again, doesn't help matters.

I just don't know how other mothers do it. I swear I'm going crazy some days. I wish I had more patience, I wish I was better organize, I wish I had a place to escape to sometimes. Today was one of those days.

I used to imagine my life, I used to be able to plan my life. Now I respond to my child day in and day out. I judge medicine timing by how he's acting, I decide food and meals by how he's feeling, I base my days and weeks completely on him. I never imagined I would be so out of control of my own life. I used to plan, plan, plan. Now my best laid plans go to hell in a handbasket by 10AM if he's not eating well or screaming for something I don't have.

I'm tired, I'm going to bed. Tomorrow is a new day, it will all be better in the morning, I hope. Hopefully I'm not cleaning up poop or puke at 4 AM. That always sucks.

Saturday, July 5, 2008

What a different 4th of July

Last year was such a sad 4th of July. We were in ICU Praying to God to please spare our child and allow him to stay with us. This year we are praying to God in gratitude and love.

TJ had a great 4th of July. What a difference from last year. We went to parades, had picnic, he got to play with his cousin, and set off a TON of fireworks. We were all celebrating TJ and his health. TJ didn't quite understand the significance of all of it. He was more focused on getting the candy from the parade.

I can tell you all day I kept thinking back to last year. I've been doing that a lot lately. Can't help it. The joy I feel is overwhelming. The fear I still feel is overwhelming. I 've been so worried for him and about his health for so long, it's like that's all I know. I keep wanting to believe we're going to be OK, but really I don't know that. Every other time I started to think that way something has crept up and nailed us. I almost feel like it jinxes us!

We are getting geared up for the Transplant Games. I don't really know what he's going to do. He may refuse to throw the ball, he may refuse to run. Who knows, he's 2.

I'm hoping to meet up with some other families. Maybe they can help put my mind at ease. The doctors and nurses at our last clinic visit were so thrilled to see TJ doing so well. I will eventually believe it too. I want to, just fearful.

We still have a ton of fireworks to set off and my husband is already talking about next year. Men! They are too funny. I have a feeling 4ht of July may become one of "our Holidays" you know the one that you are known to all your friends and family for. It falls so close to his transplant anniversary, it almost seems natural that it should.

Today, I'm tired. I need to go and walk with him, try to jog a bit. Right now he's camped out sleeping. Poor kid is still wiped out. He was up late last night and it was a busy hectic day yesterday. I love it!