Today is a GREAT Day!

The Attending said so. And who am I to argue?

Today is a GREAT day.

It has a nice ring to it, doesn’t it? Today is a great day. I can’t say it enough – it’s quite the weight off your shoulders to have the Attending come and sit with you, ask you how you think the day is going and in response, say “TODAY IS A GREAT DAY!”

David has a very long list of things that are wrong with him. That hasn’t changed. I am by no means saying he’s out of the woods, by no means, whatsoever. I think what has shifted from these awful past few days, is his potential to survive. In spite of everything that was looking so grim, he has turned around and taken a David-sized step in the right direction.

His bleeding has slowed tremendously. Yes, it’s still there, but he’s actually gone more than 12 hours without a drop in his hemoglobin or platelets. His fibrinogen is still low, so he received the cryo again this morning. His kidney function has improved somewhat, which tells the doctors that the damage he’s sustained is potentially reversible. They’ve actually stopped the bumex drip and given him a fluid bolus because his blood pressures were low, indicating his kidney’s have worked hard to flush away what his body didn’t need.

His chest x-ray looks about the same, but according to the ventilator readings, they were able to wean his settings down a bit. He was only 3 points away from needing the life-support ventilator, now he’s 7 points away. GO Captain!

And are you ready for this? This is really what tipped the scales from “good day” to “GREAT DAY”….. Drum-roll, please……His adeno count is down to 500,000!  I cried when I saw that number. It’s still high, but compared to the 1.7 million yesterday, it’s just the miracle he needed.

Which, of course, steers my discussion to last night’s prayer vigil/ prayer chain.  You guys are Amazing. I continue to be awe of the hundreds, potentially thousands (the lurkers, remember?)  of people that have prayed and sent their love and kept us in their thoughts. Everyone and I mean, everyone that walks into our room, comments on the peaceful, calm nature of it. Is that all the love and positive energy you guys keep sending our way? I’d like to think so.

I am truly blown away at the impact Capt Snuggles has had on so many people. What started out as a way for me to chronicle our time here, has turned into something more. It’s turned into a refuge, a place I can pour my soul out and receive love and support back ten-fold. I thank each and every one of you- your comments keep me going and your energy keeps the Captain strong.

Many of you have expressed the desire to help. My dear friend Kirsten, up in Toronto and my new friends, Tami and Dave have come up with a brilliant way to help – Donate Blood. With all of the blood transfusions, plasma, platelets and other blood products that David has received over the past 5 months – he’s really put a dent in the supply! In the past week alone, David has received approx 6 full units of blood. That means 6 different people had to donate blood this week JUST FOR DAVID.

Imagine the thousands upon thousands of people that will need blood products in the upcoming weeks, months, years. Imagine all the babes like David that would be lost without these blood donations. There’s always a need for blood.

Okay, I’ll get off my soap box now.

Tomorrow is a high fluid volume day for David. He’ll get cidofovir, IVIG and quite possibly more blood products. 

*sigh*

Tomorrow is another day.

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Categories: Life | Tags: , , , , , | 26 Comments

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26 thoughts on “Today is a GREAT Day!

  1. I just posted on facebook! I wrote about you in my blog today and I think I will join my good friend Kirsten in giving blood, I am her maid of honour in her wedding this April and I would be honoured to provide a gift of blood on behalf of David too!

    Congrats on the good day and i pray for more!

  2. Amy,
    As a mother of a UCD child (Mitchell) – who may potentially need a liver transplant at some point in his life – I follow your story, I share your joys with you, I shed tears with you. I have been praying every day for you and David and my profile status on FB is asking for prayers also.

    This morning – as I was reading your page – Mitchell came up and sat on my lap. He looked at David’s picture that you posted and said “me, me”! And, every time that I would try to scroll down the page – he would cry and make me scroll back up. Mitch is delayed in speech (long story of his UCD life with constant vomiting and still not eating by mouth – which has all caused delays in his oral motor skills) and has never refered to himself in a picture, as anything other than “baby”. The fact that he said the word “me” – even though it was David – was a miracle. It might seem small to any other mother – but to me – it was a huge milestone in Mitch’s language.

    Some might ask why I am sharing this story……it is because I just felt that something good was going to happen today, for you. You and I don’t know each other – but I feel a link to you through your daily journeys – and Mitch felt a link to David this morning. Call it the power of prayer, fate, UCD connection – I believe in these things.

    And, as I was snuggling with Mitchell today – I kept thinking of you and David and how long it has been since you have been able to hold him and hug him. And, it truly breaks my heart when I think of it. As much as you can – touch him, hold him, caress him. For you – as much as for him. The power of touch can be as amazing as the power of prayer.

    You are an amazing mother. And, yes, a Saint. It takes a special person to be able to live the life that you are living right now. Take that “saint” status and run with it…..it is only given to very special moms!!

    Amy

  3. great news. He is a strong little guy.

  4. I just started my blog last week and I have already come up with a pretty accurate estimate of comment to lurker ratio. It seems for every one comment I get there are 200 lurkers. Its kind of cool when you check the stats and do the math.
    Anyway I am promising myself that i will lurk no more.
    Been praying for you and your family.

  5. sharon

    Loud cheering from Australia. Way to go Captain snuggles!

  6. Once upon a time, I learned that it’s a good day if I wake up again. For you, that must have a completely different meaning – something a bit stronger.

    This… this is awesome. This is a GREAT day! I’m so glad to see that David’s numbers are improving and that his kidneys have improved some as well.
    I will keep y’all in my prayers!

  7. Wintress

    Go captain GO

  8. Amy, I am shedding tears of joy for you. Could the Universe be listening??? Continued prayers for continued improvement are coming your way.

    Kirsten

  9. Yay Captain Snuggles!!!!!!! We will not stop praying and sending positive thoughts & energy until the Captain himself tells us this battle has been won and we can stand down! 😀
    Love you guys!

  10. Wow! I cried. SO happy. Will keep up the prayers.

  11. Luann

    I am always hesitant to express my great faith in God to heal, because I get scared that if I say it out loud (or put it in writing), and God chooses not to heal, it may cause others to doubt God or be angry with Him or abandon Him altogether. Let me say this though: I know God has the ability to heal. I know He loves David more than you could ever imagine. And I know He has a plan that is for good. What is the plan? That I don’t know. Sure wish I did! But I do know this: Adeno counts of 15 million, 1 million or even a measly 500,000 are nothing to Him. He created the 100 TRILLION cells in the Captain’s body…and all the stars in the universe (some experts say there are between 10 sextillion and 1 septillion). I don’t even know how many zeros that is, but a lot. He is powerful. Awesome. Strong. And good. And your little guy is in His loving care.

  12. Sairah

    Oh, sooo good to hear!!! GO David, GO!!! Continuing to pray!! ❤

    -Sairah

  13. Crying for you but tears of happiness finally. Keep on Baby David, keep on.

  14. What great news for your little one. I pray he has many more great days!

  15. Amy – I cried when I read your message last night and I’m crying again now. Praise God! Praise God! Praise God!! Luann has said what’s in my heart. I know our God can heal. I know our God still performs miracles. I am praying – begging – him for one now. I am so thankful for this wonderful news but I am asking our Heavenly Father for more. Thank you God for your healing, for the wonderful test results, for the decrease in David’s bleeding – but please Oh God – give us more.

  16. Wendy

    Please know that there are families all over America praying for your Captain Snuggles and you and you family as well. Big hugs and virtual ones for the Captain.

  17. Patty

    Good morning Amy – no GREAT morning Amy!!! So thankful for those small leaps towards a possible recovery. I echo Luann’s thoughts that God is the healer and He alone has the power to heal David. I know He has big plans for David’s life because He has already used him in so many ways. I don’t think I told you that I found you through your first post about the Ronald Mcdonald House – the red lanyard. I had just lost my great niece through a very tragic accident. There is now a Ronald McDonald room at Wake Med Hospital in Raleigh, NC dedicated in her memory. My great niece spent 18 months on this earth, but I truly believe her mission was accomplished. She is now spending eternity in Heaven while her life continues to change so many other lives here on earth. Our God doesn’t make mistakes. Whether he chooses to heal David or take him to be with Him, I know that He will use David’s life to continue to affect so many others. You are a fantastic mother. We have all cried so many times with you – sometimes for your pain, and sometimes for the joy. I can’t wait to see how the Lord is going to work in your life because I see so many possibilities already. Will pray for many more GREAT days to come!

    Patty

  18. Joy

    I am so happy to hear this! (But not as happy as you are, I’m sure. 😉 )

    Keeping you and Captain Snuggles in my thoughts and prayers…

  19. Amy, I am praising the Lord right now! Hope is an awesome thing. Just to add to the prayer list, my church is praying for you and David. I am so thankful that so many are holding you up. With joy and expectation,

  20. Hallelujah! We’re joining everyone else in praising God for this Great Day for David! We’ll keep praying, you keep fighting, David. We all love you.

  21. Abbie

    Another one keeping you and Captain Snuggles close in my thoughts and prayers. xxxx

  22. Stephanie

    Yay David!!!!!!!!!! I miss you guys! Glad things are looking brighter today! Tell David I said to keep up the good work!!

  23. Awesome Awesome Awesome to hear… we are praying for him (and you) and I also just posted on FB too.

  24. fantastic!!!small steps forward are so good. You are all in my thought and prayers. I am unable to give blood but can pray like crazy!!!

  25. It is a great day. I put you on my Church’s prayer list. Bless you all.

  26. Erika

    What a wonderful day! So many good things and more to come!!

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