Questions

I get a lot of questions from all over the blogosphere and from friends and family as well. There’s one question that has been asked a lot and my friend, Diane, asked it again. So I’ll try and answer it the best I can. She wrote to me and said:

This poor baby when he gets better will need a detox. Why is that they feel all these drugs are less harmful than to remove the organ (that is the cause of the problems, right?) and use a machine to help stable him until availability of a new organ? I guess it comes down to I don’t understand why they try so hard to work with an organ that obviously isn’t going to work for David, or is that par for the course when receiving a transplant – being able to be strong enough to fight rejection? I mean his body is rejecting the transplant? right at least technically?

Okay, first – he’s not in rejection. His liver is beautiful and it works perfectly. Thank you Donor Family, it’s the best thing he’s got going for him right now. 2nd, unfortunately there’s no machine to replace or help a liver function. Lungs, yes. Hearts, yes. Kidneys, yes. Livers, no.

Having said that, his liver is, at least partially, the cause of his problems. After his transplant, David ended up with adenovirus. (How he caught it, we don’t know – he only left the hospital for a day before I brought him back sick.) In you or me – adeno is simply a cold. It can cause pneumonia and make you feel like crap, but generally it isn’t much cause for concern.

David was highly immunosuppressed when he caught it, he was on steroids and Prograf and the adenovirus had a field day with his less than spectacular immune system.  So while his body was trying to ward off the adenovirus, his liver tried to help. Just what all good livers should do.

Which, if it had really been his liver and his lymphocytes, that would have been fantastic. As it was – the lymphocytes his new liver created or already had in storage, went out, in reaction to the adenovirus, and attacked David’s immune system instead. That’s what’s called graft vs. host disease. That’s what made his skin all blistery and his gut not work and wrecked havoc on his eyes.

It’s why we’ve been throwing all these drugs at him. A new liver won’t do him any good – in fact, it could potentially add yet another set of donor cells to the frothy mix already buzzing around inside him. The drugs are trying to get the donor lymphocytes under control AND trying to get the adenovirus under control.

The treatments for these 2 diseases are the exact opposite. GVHD needs more immunosuppression (campath, steroids, prograf, etc) to get it under control and adenovirus needs a nice pretty immune system to fight it off. (cidofovir, ivIG)

I hope that helps explain things better and you understand a bit more of why they’re working so hard to balance all these drugs. The other things that come into play for him is the fact that several of these drugs are toxic to his kidney’s – that’s why his renal function is worsening. He retains fluid, which is bad for his lungs. They give him lasix to pee and then, when he pees too much, they have to give him fluids to help stabilize his heart rate and blood pressures.

It’s a balancing act through and through. I find it very difficult to say the words out loud – Capt Snuggles is not doing well. I know, I know I should be saying ‘he’ll get better’, ‘he pulled through before, he’ll do it again’, but I feel like that’s masking what’s really going on.

He’s very sick, there’s no two ways about it. It’s near midnight, they’ve turned up his vent settings. They are almost as high as he can go, on this vent. I’m truly afraid of what tomorrow holds. Will it be the other vent? The ‘life support’ vent that does all the breathing for him. Will he require it that soon? I’m devastated that’s it’s come to these thought’s so quickly.

His kidney’s aren’t working very well, either. He had been peeing well. They gave him the lasix, but it didn’t produce any more urine.  If his kidney’s shut-down, yes they can put him on dialysis. But if he ends up on the life-support vent AND the dialysis – there aren’t any more machines to support him.

They are going to give him diuril and then another dose of lasix. He needs to pee. He had started to bleed from his nose, so they went ahead with another 2 units of platelets. ( He received platelets this morning, but they didn’t help much.) And the plasma.They went ahead with the plasma, as well.

*sigh*

There is nothing easy about any of this. No kinder, more gentler way to describe what he’s going through. This is what it is. Right now, this very moment, he is stable. He appears comfortable. It’s all I want: his comfort through all he has left to endure.

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Categories: Life | Tags: , , , , , , , , , , | 20 Comments

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20 thoughts on “Questions

  1. I’m so sorry. I don’t know what to say, and I fear if I tried to say anything, it’d come out sounding trite and condescending. I’m praying my heart out for Capt. Snuggles…and your whole family. Know you’re being enveloped in love and hope and prayers and good energy. I’m just sorry you have to go through this.

  2. Dearest Amy,
    Not sure how to start this note or end this note. Because you have shared your life with us, we’ve been able to go through it with you in a way. Please know that everywhere, there are people rooting for your guys. Rooting for the happy ending. Rooting for your life to return to the perfect dysfunction we all have in our homes. Until then, you are living in the very present thing we call now. For most living in the now is impossible. All that matters is your time right now with your Capt. Your love, your presence, your energy is what you can give him and is what is important to him right now. Let the others worry about the technical stuff. Let us worry about the future for you.
    Be with your little one and amaze yourself with him now.
    -Alessandra

  3. Abbie

    Another one with no words but many prayers, healing vibes and good wishes for you and Captain Snuggles. As Alessandra, we are all rooting for you and your beautiful boy.

  4. Beth Hedgpeth

    Dear Amy,
    My sister, Katie Frieder Thomas, posted information about your son on her Facebook page. I just want you to know that I am praying so hard and sending positive thoughts for you all. As a mother, my heart just breaks for any parent who is going through what you are going through.
    — Beth Frieder Hedgpeth

  5. Prayed at church this morning and will keep doing so. Praying for the doctors to maintain that balance and for the Capt. to maintain the fight.

  6. I can’t even begin to imagine what you’re going through and what your family is going through. I’ve read a just a little of of your blog and have a teeny tiny minuscule look into your life. I’ll be praying for your family as God brings you to mind…Blessings to all of you!

    I came by from Comment Love Day at FTLOB:)

  7. Thank you for taking them time to explain to us the medical details of what you and your son are going through. I am praying and sending you lots of love and good wishes.

  8. Pingback: A Captain’s Courage « Running for Autism

  9. Luann

    You are stronger than you know, and you are going to be OK no matter what happens. You are loved more than you know, even when you don’t understand why things are the way they are. You are thought of more than you know, even when you feel all alone. Don’t be afraid of the darkness, for God is with you even there. There will be tough days ahead, but you can do this.

  10. Amy – I am so sorry to read this. I seriously cannot stop thinking of you guys the past couple days. Constantly, you and capt snuggles are on my mind. I am continuing to pray for you guys – I pray that God heals capt snuggles, and brings peace to both of you during this trying time. I pray that this is just a major hurdle in the road, and that he is able to muster the strength to fight this with His help.

  11. Pingback: Tweets that mention Questions | transplanted thoughts -- Topsy.com

  12. Big hugs for you and for Capt. Snuggle, and lots of prayers. Jen xx

  13. I am praying for you and your sweet boy. I have been thinking about you all day since I found your blog via Aunt Becky on Facebook. I talked about your story with my husband and we both are so touched by your courage and strength. My sister is a part of a huge global prayer network and I am calling her tonight to ask her to inform them of your story. So know that millions of people around the world are sending you love. xoxox, Annie

  14. Great explanation. Poor guy and poor you. What a tough journey.thinking of you all, big positive donor cell quiescing thoughts.

  15. Amy,
    I read through that twice and I had the lightbulb in a thought bubble all day. You gave such a mom to mom explanation for everyone to understand. I understand so much better, I have ZERO knowledge about transplants. I would hate to understand what a rejected organ could do. Wow, wow is all I can muster – all this from a simple virus. Our prayer chain is up and running, however, we decided that absolutely David needs prayer, but it needed to encompass the entire family. We can’t leave you defenseless – realistically, you have to be strong on every level to help David have his fighting chance. His body sounds tired and weak, but we are all thinking David can do this. Every posting seems to have a little glimmer, when you give numbers out and maybe I speak for myself, but when some numbers dump down I feel a little jump for joy in my heart, because it was what I prayed for. Meanwhile, a different number changes and it’s darn I didn’t mention that one. My heart is with you lifting all of you, Capt. Snuggles, you, your other kids, people that help make it possible for you to be at the hospital 24/7, doctors, nurses, etc. Thinking of you often, praying even more often and hoping you will always be blessed.

  16. I am so sorry that you are going through this. I wish you and your son and your whole family peace.

  17. Amy I just wanted to drop you a little note to let you know you have many prayers coming from IL. My hubby announced in church this morning Capt. Snuggles… and we all gathered together, held hands and prayed for him and your family. I can’t imagine what you are going through or what he is going through. I wish I could hug you and kiss him. You are a very strong woman. Capt. Snuggles is so blessed to have you for his mama.

  18. Best wishes and prayers from total strangers. We don’t know you or your amazing boys, but God knows them intimately and we are praying for an amazing recovery for your little one.

  19. Amy,

    I’m here for you, and I feel for you. I can’t by any means say I understand what you’re going through. All I can do is wish and wish and wish and wish and wish and wish for David, you and your family. I’m thinking of you all.

    Veronica

  20. As always you have me in tears, and I just don’t know what to say… You are so brave for sharing this with us!

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