You can stop judging now

dlast09 · October 2012

Wink

I've been creeping around TB, but not posting a ton. I think I got wrapped up in the bump for a while, and then just randomly dropped it somehow. But there has been quite a bit going on. Samuel had his 1 year post transplant cath, and they found signs of rejection. In a nutshell, they rate rejection on a 0-4 scale. 4 being the worst. We were really hoping for a 0 or even a 1 would have been OKAY, but he was a 2. So he had to be admitted to the hospital for four days to receive steroids and a rejection drug.

Talk about being on steroids, my kid was eating full meals made for a grown man. It was ridiculous. I didn't think those kind of steroids would effect him that way, but our cardiologist said it is very possible.

So needless to say, things have been cray. I miss you guys, and I try to keep up with you all, I promise! Ha.

Not to whore my blog out, but if you are interested in the deets of all the rejection stuff, there are a few recent posts about it. Just so I don't make this book of a post a million times longer ;]

diego299 · October 2012

I'm so sorry you and you're LO are going through this. I hope the drugs work and he keeps improving.

kujayhawkgirl · October 2012

Good to see you dlast! That's very scary about Samuel. Do they think he'll just need extra steroid and anti-rejection meds? My aunt had a liver transplant 5 years ago and she's on anti-rejection meds for the rest of her life. I wasn't sure if that was an option for babies (eh, toddlers??). Wishing Samuel continued health and recovery!!

blu-eyedwife · October 2012

Hey D - I've been following S's progress on your blog for the past weekish - since you initially posted about the rejection. All of you have been in my thoughts.

LCass · October 2012

Poor S and poor you! I'm crossing fingers that the steroids and rejection drugs do their thing. Hopefully he'll get a 0 or 1 next time around.

We definitely miss you around here. Even if it's not regular, we'd love to have you post whenever you have the chance.

dlast09 · October 2012

Thanks, ladies.

Kujay- He will be on at least one immunosuppressant for the rest of his life. Just to, well, continue supressing his immune system so it does not reject the heart. He is currently on 3 meds and baby aspirin. But eventually he will grow out of most of them, except for the immunosuppresant of course.

They did the round of steroids and treatment, and have us back to twice a week appointments. So an hour drive to Denver at 6am in lovely morning work traffic TWICE a friggin week. Not stoked on that. But in 6-8 weeks he will have another cath done where they will do another biopsy, and then hopefully get some good numbers, preferably a ZERO.

dlast09 · October 2012

LCass:
Poor S and poor you! I'm crossing fingers that the steroids and rejection drugs do their thing. Hopefully he'll get a 0 or 1 next time around.
We definitely miss you around here. Even if it's not regular, we'd love to have you post whenever you have the chance.

Awh thanks, you guys are awesome. I will definitely try to post here and there instead of creeping ;]

amyc216 · October 2012

Oh no! I hope everything stays ok with your DS!

Scramblersmom · October 2012

Oh dlast, I am so very sorry. I hope that your DS's heart will not be fully rejected and that things will go well. I will keep you all in my T&Ps. please do continue to check in with us once in awhile and let us know how your DS is doing. Best wishes to you.

Elsa1984 · October 2012

Hopefully the meds help him out and his number goes down! So scary ! Get well soon S!

Chunstad · October 2012

Our prayers are with you and S-seriously, I don't just say that. Creepy internet (((hugs)))

shediva1 · October 2012

I hope Samuel gets well soon, I'm always thinking of him. Take care and hang in there.

dlast09 · October 2012

Thank you all. Like I said, you guys are the best.

Woodsie:
Aw, sorry for the call out, dlast. I do know that some people have lives outside of TB! I'm just happy to 'see' you! I'm sorry to hear Samuel didn't get the results you hoped for. You are both in my thoughts!

Don't be sorry! I was only kidding haha. Wink

joolz17 · October 2012

Aw, dlast, that sounds so tough. Your little guy is such a trooper. Sending you all positive and happy thoughts.

Liz4444 · October 2012

Hi DLast, I've missed you! Life does seem to have a way of butting in and making you neglect bumping (I haven't been around a ton recently either). Is it possible that with new meds S would drop to a 0 or 1 on the scale?

dlast09 · October 2012

Liz4444:
Hi DLast, I've missed you! Life does seem to have a way of butting in and making you neglect bumping (I haven't been around a ton recently either). Is it possible that with new meds S would drop to a 0 or 1 on the scale?

I've missed your sense of humor, Liz.

And yes, that is the goal, for the next biopsy to be a 0. We are hoping the meds will allow this to happen.

pennysuedog · October 2012

I do not knoe how you do it! You are so strong dealing with all of this. I will be thinking about you guys. Go S!

dlast09 · October 2012

pennysuedog:
I do not knoe how you do it! You are so strong dealing with all of this. I will be thinking about you guys. Go S!

I honestly have NO clue how I remain calm. When I got news of his rejection, I completely broke down and ugly cried, called my husband and told him, and he ran home to comfort me. But I try to keep my calm/strong face on.

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