David 1, Lymphocytes 0

While David’s  lymphocytes did make it to zero this morning, he has not had the best of days. The real test will be if they remain zero. Only tomorrow will tell, what, if any, more steps can be taken.

The Shriner’s doctor came to his re-dressing today and suggested a different type of dressing. We were able to get him re-dressed in less than 2 hours, with an ultrasound thrown in for good measure. The day had been looking up.

For every gain he seems to make, there is always something taken away.  During his previous dressing changes his core body temperature dipped quite significantly. But with the addition of his own personal heater called a Baur Hugger and layers and layers and layers of warm blankets to keep the warm air on him, he warmed back up, usually within the same amount of time he was uncovered. 4 hours uncovered the first day, 4 hours to warm up, 2 hours uncovered yesterday, 2 hours to warm up.

2 hours uncovered today, I expected him warmed up by 12pm. It is a full twelve hours later as I write this and he still has not warmed up. His core temperature hovers between 94 and 95 degrees.  Infection is the worst possible problem for him right now.  His inability to maintain his temperature is as dangerous as a prolonged fever. Maybe even worse. A dose of tylenol won’t bring up his temp.

This is yet another set-back I did not see coming. They have switched around his antibiotics, in the hopes they can catch the bug if that is truly what’s happening.

“I am concerned about this development.” This statement is almost the worse thing you can have the attending PICU doctor tell you at 1 o’clock in the morning.

“We need to have a talk.” That’s the worse.

Our Favorite Fellow came to have the *talk* with me, Monday night. You know the one. The one were the nice doctor comes to tell you your son is going to die.

Yeah…the one you never, ever want to have to listen to………again.

“Do you understand how sick David is?” Do I really have to say it out loud?

“We don’t know what’s wrong with Nathaniel.”   I don’t understand

How do you think David is doing?”  Really? Do I really have to say it out loud?

“There’s nothing more we can do for Nathaniel.”    I don’t understand…..

“Would you like to discuss David’s condition with the other team members?

I especially don’t want to say it out loud in front of every one.

“We’ve turned off Nathaniel’s life support.”  I don’t understand….

Have you told your family how very, very sick David is?

I get that ‘very,very sick’ is a euphemism for dying – I get it – I do,

WHY DO I HAVE TO SAY IT OUT LOUD?!?!?!?

Do I have to come out and say, yes, I understand my son was laughing and giggling last week.  My son was smiling at me every time he woke up.  My son was happy to look at toys and snuggle against me every time I got to help change out his crib.

Do I really have to come out and say, YES , I UNDERSTAND that he’s riding the wave of narcotics that would OD the healthiest adult and all of his skin has sloughed off and his belly doesn’t work and he’s in immeasurable pain, regardless of the truck load of narcotics he’s on, he can’t maintain his body temperature, regardless of the fact it’s 90 frickin degrees in this room and he can barely open his eyes because he’s so swollen with fluid overload.

Do I have to come out and say that yes, I understand I can no longer hold my sweet baby and yes,  I understand that he may, that he could very well die right before my eyes,  no matter what else you do to treat him?

Why do I have to say it out loud?

Why can’t it be whispered to the wind, never to be heard, therefore never made into concrete thought.

Why?

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Categories: Life | Tags: , , , , , | 13 Comments

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13 thoughts on “David 1, Lymphocytes 0

  1. Amy,
    I have been reading your blog every day. It is the first thing that I wake to in the morning and the last thing I do before I go to bed. I know that we don’t know each other – but as a mom who has watched her son suffer also – I wish that I could be there for you, hold your hand, sit by your side, take away your heartache as you watch your beautiful baby go through such trauma. Please know that you are in my prayers every day, as is David.
    Amy

  2. mooney=mc2

    Oh man. Oh man, Oh man. I am so so so so sorry.

    I hope that you have put out the call to family, for everyone, to get to the hospital as soon as possible. David needs to be surrounded by all of the love possible right now. You CANNOT do this alone.

    Please, if you are near David and Amy, PLEASE get to them and swallow them up in love and support in this very dark time. This is no time for her to do this alone.

    Amy, do not give up hope. You tell those doctors to not give up hope either!

    If you do not mind…

    Most merciful God, you hold precious David in your hands. Please bring peace upon his body and soul, her him according to your perfect plan. We wrap his family in your love and ours. Please give them the serenity in the face of adversity and grant this baby’s caregivers wisdom in his hour our of greatest need. We give to you, oh Lord, all honor and glory and pray for complete healing for this precious child. AMEN.

    with love
    Mindy

  3. Amy,
    I’ve been reading your blog and been struggling with words for you. I can’t even imagine what you are going through. Our daughter is 13 months old and was diagnosed with Citrullinemia at day 4. Those were the hardest, and darkest days of our lives. And we can’t even compare to what you are going through now too. I only wish there was something I could do for you.
    You are a strong and wonderful mother. Don’t give up your faith yet. Even when you think you can’t go on, dig deep and find it. Don’t give on David! Doctors aren’t always right, and God has a plan. I know that’s hard to understand and we always questions why but he does. And only he knows when it’s over.
    I’ll be praying for you and your little David.

    With love,
    Stacy

  4. I can’t really find the words to say what I want to. As a mom who is about to embark on this journey of watching my daughter go through a liver transplant, it breaks my heart to read this entry. I am so sorry and am praying for you and your family.

  5. Luann

    Tears, tears, tears. Praying for you and your family today, Amy.

  6. Sairah

    Amy,

    I read your post this morning, but I did not know what to say…please know that you and David are in my thoughts and prayers. I know they are just words, but please don’t give up hope!

    -Sairah

  7. Amy,

    I agree with Mindy — don’t go this alone. Get your family around you, get some support around you, even if they have to stop their world for a little bit. My heart goes out to you. I’m so sorry to hear today’s update. I’m thinking of David and he is in my almost every thought. Stay strong, little guy!!

    Veronica

  8. Amy, you and David are in my thoughts. Know that there are vibes of positive energy going out into the universe for you, and lots of healing thoughts for David. Don’t give up. Don’t let anyone give up. And like others have said, surround yourself with as much love and support as you can.

    Hugs to you and your family.
    Kirsten

  9. dysfunctionalsupermom

    Amy…my heart is breaking for you and the family. I’m crying right now and I can’t even find the right words to say I’m sorry. I’m sorry that my kids are healthy and I feel guilty that you have suffered through so much. I pray with every single fiber of my being that God hears Mindy’s prayers & yours and answers. That this very moment, he is feeling the relief of healing. I will be praying.
    Brandi

  10. Amy ~ I was weeping reading this post. I don’t know any words to help you right now. Little David, sweet angel, we are all pulling for you and sending our love.

    Courtney

  11. Sunny

    Amy,
    You and your family are in my thoughts.
    Don’t give up, there’s always hope as long as you don’t give up.

    Do not fear what may happen tomorrow;
    The same everlasting Father who cares for you today
    will take care of you today and every day

    He will either shield you from suffering or will give
    you unfailing strengthto bear it.

    Be at peace and put aside all anxious thoughts
    and imaginations.
    quote from St. Francis de Sales

    You have my prayer.
    Sunny

  12. Thank you so much for all of your prayers and words of encouragement. I never imagined this dark journey when I started this blog. I am in awe of the power my words have had to help forge these friendships. I feel blessed to have encountered each and every one of you. Thank you from the bottom of my heart – all of your comments help make these days just a bit more bearable.
    Peace and Hugs~Amy

  13. Pingback: A Call to Arms | transplanted thoughts

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