I am not a Saint

Captain Snuggles is still bleeding. It’s been non-stop most of the day. They’ve given 2 more units of platelets and another 1/2 unit of blood is on it’s way. His hemoglobin after last night’s transfusion was 10.1, right now it’s 8.2.

I have a knot in my stomach that won’t go away. I’ve sat and watched the blood drain out all damn day long. I want to hold him so bad, my arms ache.

It’s only 10pm. The night is still young for the devastation I know lies ahead.  They ‘clamp’ the NG tube anytime they need to put meds down it. So at 9pm they clamp it for his prograf. By 9:30 he’s vomited blood. He’s losing blood faster than last night. Faster than they can transfuse. He’s gotten his 1/2 unit of blood. Another unit has been ordered. It’s now midnight.

Midnight means it’s the Captain’s 8 month birthday. 1-11-11. Not a very auspicious day for him. We’re one week shy of spending five full months here. He has spent more time in this hospital than he has at home. That makes me immensely sad. Immensely sad, indeed.

This day was meant to be full of laughter and light, instead he has blood and pain. Darkness and confusion. I feel hollow, my life force drains away as he bleeds. There’s not much more they can do for the bleeding except support him. He’s on his 7th blood transfusion in just a few days. They’re talking about starting a platelet drip and he will receive more ‘cyro’ today.

I’m at a loss.

The PICU Attending came, after being off service for a month and announced that her and her predecessor agreed I was a saint.

I laughed. I am not a saint. I’m just a mama. A mama that’s going to miss her Capt Snuggles something fierce.

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Categories: Life | Tags: , , , , , | 17 Comments

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17 thoughts on “I am not a Saint

  1. Kiss him as much as you can. Talk to him & let him hear your voice.
    I agree with them: you are a saint. I don’t believe that sainthood equals perfection. I believe that sainthood means self sacrifice & a life of empathy. If you haven’t given that to your babies, then no mother has. Don’t forget that Saint Amy. Don’t forget that you are a good mother of beautiful children who have a profound purpose on this earth. It won’t always be blood and darkness sweet friend.
    Love you.

  2. Wendy

    Amy
    My thoughts and prayers are reaching out to you both…..there are no magical words I can say to you that will make any of this better or easier. Just know that there are people out here, people you have have never met, that are pulling for your sweet Capt Snuggles and for you. I am sending as many good vibes as I can . You may not think of yourself as a saint but I am sure if that beautiful baby boy could talk he would tell you that you are his.
    Wendy

  3. You are a great mother and Capt.Snuggles is so lucky to have a caring mommy like u! I just wish I could be there for u but know u r always in my heart and on my mind daily! David is a fighter and he has fought this long have faith hun I believe in miracles and u just have to have faith in the good Lord! Don’t forget that he knows u r there with him and I’m sure the love from u Iin that room is very well felt! Praying for hope! Love Ya, and God Bless You!!

  4. I wish I was there to give you a big hug. You are a great mom, Amy. I’m thinking of you and David.

    Veronica

  5. Oh Amy, my heart breaks to read this and I wish I could be there with you in person to hug you and hold your hand. You and David are constantly in my thoughts.
    Kirsten

  6. My heart aches for you Amy……
    Tears stream down my face, I am so scared for you…..
    I can’t tell you how brave, and how strong you are to face each and every day with what hope and faith you possess…
    I’m amazed how David continues to hold on… He is the most inspiring, and tough little baby boy I have ever known. I’m sorry you continue to struggle… I’m sorry that life is unfair…
    I hold your hand in my thoughts, and picture being there with you…
    comforting your weary mind, and your restless arms..
    I don’t know what to say…. I’m just speechless…
    I’m sorry….. You’re the most influential person I’ve met, and there’s a blessing somewhere in all of this. .. for you and Capt Snuggles…..
    My heart and my thoughts are with you… I wish I could do more.
    Hugs

    Kathy

  7. I wish I was there to hug you.
    I don’t know what to say. I’m in tears. Maybe you don’t think you are a saint and that’s OK. You don’t have to. The rest of us see.

  8. mooney=mc2

    I don’t know what to say. I wish I had words that would take all of your pain away but, of course, I do not. You are doing a remarkable job of not only tending to the Capt. but you are also educating us all along the way. You have shown us all how to travel this path with grace and dignity.

    We care no matter what though…whether you are Saint-like or railing against the world. We are all here for you as best as we can be.

    I am so sorry this is happening.

  9. I wish I could say something useful and profound but I can’t b/c i’m at a loss for words. I’m dumbfounded by you as a person and a mother.
    Sending you love and hugs from afar. xxxxx

  10. Amy, David is blessed to have had you as his mommy. Be assured that if we could all be with you, you would have so many hugs you would be smothered with love and prayers. I am praying for you. My heart bleeds for you and for Captain Snuggles.

  11. Love to David and his wonderful mama.

    Amy

  12. I have been reading through your blog and for once in my self-centered, too many words to count am speechless
    I am so sorry for you, Captain Snuggles (wonderful name) and the rest of your family. I don’t pray but will send thoughts. Many many good thoughts

  13. There are NO words – so I have taken some action. I have been working on a prayer chain for Capt. Snuggles at 11:11 pm on 1/11/11. I am still working on a few church prayer groups, but anyone can help. Just call your local church and tell them about this little boy and chances are we can get thousands of people to pray at 11:11 tonight. I am still trying to see if our kids Christian school will do a phone chain prayer for David a.k.a Captain Snuggles, however, they are a bit reluctant due to the snow storm that is coming in. Really I just want a call to go out to our families around 5pm to ask families to pray at 11:11 for David and that is it. So if I can’t do this through the kids school, how about on-line and everyone post a status to pray or kind thoughts for David at 11:11 tonight. Make your status posting anytime today. I have a group specifically praying for Amy (of about 300 – 500) women – thank you G for all your hard work in setting this up for Amy. I don’t want followers to think Amy has been left out.
    Amy, dear friend – I don’t know how hard this is on you and I won’t pretend that I know, but please don’t give up. Capt. Snuggles is still here so you can’t miss him fierce. I hope there is a ton of vibration in Capt. snuggles room at 11:11 will you please, let us know if there is a buzzing of difference between 11:11 on 1/11/11. Many people pray for hours and some only a minute, I tried to get this set up for this morning 11:11 am, but I just couldn’t get the numbers and there is another chance tonight to get the numbers.
    Here’s to seeing all of you in praying for David at 11:11 on 1/11/111. Blessings, to all whether you pray or not, supporting Amy is important too.

  14. Luann

    Love and hugs to you, dear friend.

  15. beingmekirrily

    I am tremendously sorry that your Capt. Snuggles and you have to go through this. I know what it’s like to sit by and watch helplessly. I know that empty-armed ache. I’m with you. Stay strong and hold that centre, you sound incredibly calm – even though you probably don’t feel it! – but even in the grounding that it takes for you to give these updates on your blog, there will be some good happening for you, some replenishing of the resilience you need to get you through. My thoughts and hopeful prayers are with you.

  16. Tonya Fisher

    My dear friend,
    My heart is heavy for all of you. Here is my prayer.
    Father God,
    Bless Amy, David and all medical staff with your presence this very moment. May they know your unfailing and unconditional love. Bring comfort and strength to weary and heavy hearts. Give them your courage and wisdom in each and every circumstance. Lord, the pain in this life can be excruciating and devouring. I pray for pain and darkness to flee Amy, David and the whole family right now in Jesus name. Wrap your arms around them and place your hedge of protection over them. May your Holy Spirit fill them and the room. Place your MightyWarrior Angels around Capt. Snuggles bed. Touch his body with your healing hands (stop the bleeding in his mouth, tube site and renal area… release the fluid retention in his lungs and body. adenovirus be gone, you must flee in Jesus Name! You have no right to be there. Bring all cell and blood count #’s to normal limits and no longer need machines for help. Give Amy your divine direction in caring for David and give her peace. May David be completely healed and made whole. Thank You Lord for hearing my prayer and for everything you are going to do! We Praise Your Holy Name!
    Amen.
    We Love You and are always thinking about you Amy.

    Tonya

  17. Pingback: Tweets that mention I am not a Saint | transplanted thoughts -- Topsy.com

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