Tuesday, August 25, 2009

The 4-11.R

Last year, when Noah went in for his Cath, I think he was fighting off an infection. We had decided to fly to Denver that year and as luck would have it, we had a lunger on board.

I spent the entire flight cringing as I imagined all the infectious germies spewing forth as we breathed in the recirculated air.

While there were no complications, Noah still was weakened and sick afterward.

This year, we drove and only had our own recirculated air to breath. And while the day was long we did eventually get to our destination. And lucky for us, the night manager at the Ronald McDonald House in Aurora stayed up to check us in.

Noah's cath this year went exceptionally well. He didn't want to sleep and had to be given everything under the sun but as soon as he was allowed, he was up and running.

I was so relieved that everything went well and Noah had the strength he needed for the procedure.

I've been (not so) patiently waiting for the biopsy results to come back. I suspected that if all was well Alison would just text me. So I was a bit suspicious when my phone rang.

Turns out, it wasn't the "big fat zero" I had hoped for. His rejection level is a 1R (formally a 1A). This means there were rejection cells present. However, it's such a low level that it's not treated and it's not really classified as a rejection episode.

I was a little bummed, if I am being honest. Is it better than full-on rejection? Yes. Is it the ZERO he had last year? No.

Alison came to my rescue (as usual) and put it into perspective for me.

Last year, his level was Zero but his pressures where way too high and not good. This year, his pressures are perfect but his rejection level is a 1R, not even high enough to need treatment.

After the cath yesterday, I asked Dr. Pietra (he is FABULOUS!) if Noah's chances of developing Acute rejection (the type of rejection you think about in reference to transplants vs Chronic Rejection like CAD) was lower because he had his transplant so young and he said it was.

It's very possible that 2 years from now (yep, you read that right.... next cath is TWO years from now) his rejection level could be a zero again. For me, it's sort of hard to not think of it as progressive... like once the rejection cells are there they always will be and will just keep adding more until the rejection is serious or treated. But that's not the case.

So while it wasn't exactly what I had been praying for, it's still wonderful news and an outcome that I am extremely grateful for.

I want everyone who reads this to know how much I am thankful for your support and love. I know you have been praying for Noah and my family and there are no words to express my gratitude.

May the Lord bless each of you with the blessings you are in need of.


Monday, August 24, 2009

Cath Lab Update

Noah's cath went fabulous!

As I mentioned before, he really fought the sedation. But he is now resting comfortably... which is a good thing since he has to stay laying down for at least 4 hours post procedure.

The pressures measured in his heart are wonderful. Any signs of the stiffness we found last year, are gone. There is no sign of Coronary Artery Disease (which is thought to be a form of chronic, long-term rejection). The biopsy results won't be back until tomorrow around noon. But seeing as how everything else was good, it would be surprising if the biopsy results were good too.

So, no additional medications and we don't have to come back for 2 years this time.

Thank you everyone for your thoughts, prayers and support. It's so reassuring to know that you all care about and love my little man.


A Cath Lab Update

Noah is having his Heart Cath right now.

He resisted tons of sedation. To fall asleep and stay that way, he needed 2 doses of Versed, 2 doses of Demerol, 1 dose of Benedryl, and a dose of Ketamine.

He is one tough cookie.

Alison (Noah's Transplant Coordinator) is back there with him and sending me text message updates. (Have I mentioned lately how much I adore her?)

Her last update said the pressure levels were good and they were moving from the left side on to the right.

I'll post more later as I get updates. If you are interested in real time updates, follow me on Twitter or visit my Memoirs of a Mommy and read my Twitter Updates there.

Thanks for your support... I feel it.

Wednesday, August 19, 2009

Headed Back To Denver

It's that time again.

On Saturday we leave for Denver. Noah's 2nd annual (eventually only every other year) Heart Cath Lab visit is set up for Monday.

I know I said I wasn't as nervous. And I'm not. But, truth be told, I am still feeling the worry though.

I'm starting to worry about his Cyclosporin level. Since I'm on a "truth telling roll"... I haven't sent his level in to be checked in a while. He's way past due. So I'm worried his level won't be high enough... but then I worry that maybe it's too high since he does seem to have some thrush as the moment. (Small beans... I know.)

I'm worried about finding rejection. I'm worried the stiffness he had last time will have gotten worse since he hasn't been on any heart meds for the past year....

I'm mom. I'm worried.

I recognize that we are in a very good place. So many of the people we have met and love, and even those who we just follow on their blogs, are having rough times. So many are so sick. So many are taking hit after hit. I remember what that felt like. So even pretending like our current situation is half of a big deal feels so very wrong.

I would have cut off my right arm to be where I am now. I would have laughed at myself for worrying over small beans... and I would have fiercely scolded myself for not getting his level checked on time...

Yet, to everything there is a season... and it seems so much easier now to be worried over small beans when I don't have BIG beans weighing me down.

So, off we go.

We are visiting the Denver Aquarium while we are there since it's the coolest ever. Maybe we'll even hit the zoo. But we get to see old friends, walk old roads (and hospital hallways), and eat a little Boston Market.

My prayers are that his Cath will go well. That Noah will be strong and sustained. That Dr. Pietra's hands will be guided and his knowledge, sharpened. That Noah's heart and body will be one, with no rejection... no stiffness.... no complications.

Honestly... I feel so very fragile sometimes. I hate the worry. I hate the unknown. But I also know that all I have to do is get on my knees and ask Heavenly Father for the strength I am in need of. He never lets me down.

I felt very strongly after Noah was born that God DOES give us trials we can't bare. BUT He also gives us the strength we need to see them through. So while I feel weak and powerless and even fearful of the unknown... I also know that whatever may come, He will give me the strength I need.

So now, as I have many times before, I must ask for your help.

Please keep Noah in your thoughts and prayers. Sometimes there are blessings that God wants to give us but can only be given if they are asked for. So, please... help me ask our Heavenly Father for the blessings that Noah needs.

Wednesday, August 12, 2009

Dodged Another Bullet

Today, Noah and I went to Primary Children's Medical Center (the local Children's Hospital) so he could get an in-depth eye exam.

It's been one of those things that has always tickled a nerve for me. Being that he was so low on oxygen before transplant, on O2 therapy for a long while post-transplant, and all the hoopla surrounding his blood transfusion reaction (including the insanely high Blood Pressure), I was worried that his tendency to run into EVERYTHING was more than just toddler recklessness.

Luckily, he passed his dilated exam with flying colors. Because of a family history of Amblyopia, he does need to be seen again in a year, but I can totally deal with that.

The Doctor did ask me if he had ever needed to have an MRI of his brain before (no idea why he asked) and it got me to thinking...

I remembered that awful Heart Cath day when Dr. Pietra decided to take Noah in to check out the ectopy and found out his blood pressure was lethally high, even for an adult.

They rushed him downstairs for a brain scan, fully expecting to find a devastating bleed.

Talk about losing it... that was the day my sanity started cracking (and I'm just barely getting it back together again).

He dodged a bullet that time. No brain bleed and no significant rejection (although he was treated and the ectopy and blood pressure resolved). Now it would seem he has done it again. His hearing is great, his eyes are great, and every single person who sees him is shocked when they learn he had a heart transplant.

I am not saying this lightly. I know just how very different things could be. Every single day Noah is healthy is a blessing. Every test he passes, every medication he gets to avoid... it's all nothing short of amazing.

And while being kept awake hours on end, every single night to the "mamamamama" screams and then starting the day out every morning by 5 am playing dodge-ball while I'm trying to sleep in bed, is not on the top of my list of favorite things... it's still a million times better than any alternative.

You know, when I was pregnant with Noah, I used to wonder how my life was going to change. And this is going to sound horrible, but I wondered how it was going to be possible to love him as much as I already loved Lilly.

I looked back, now, and laugh at how much I didn't understand.

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