What I’ve Been Doing

Where have I been?  Well, Tuesday I officially moved into the hospital.  Charlie was taken out of intensive care and moved into a recovery unit.  This means that if I am not with him than he is alone in a room by himself.  Also, I am required to do diaper changes, feedings, embilical cord care, oral care, baths, etc.  I’m like a brand-new mom, but in a hospital where I keep getting interrupted by docs, techs, therapists, and nurses.  I’m figuring out that the resident on staff never does crap for me, but I can sweet talk the right nurse or therapist to do what I want.  I am WORKING the system.  We still have a bunch of things to work on, but the doctors don’t think he’s critical any more.  He looks around, sneezes, yawns, sometimes looks at you, and generally looks like a normal baby but with a few extra tubes.  He does not know how to eat, though.  An occupational therapist is working with him, but he doesn’t know how to suck from a bottle, and he will not go home if he can’t be fed.  If he doesn’t figure it out, there is a surgery that can be done, but they want to give him some time before leaping to surgery as an answer. 
 
Here’s the quick update:
 
Charlie cannot have thin liquids because his suck coordination isn’t there yet, and he might aspirate
He can only get about 10% of his required nutrition from a bottle, but the therapist is seeing improved coordination.  I have to feed him the rest of his meals through a tube in the nose–talk about crappy!
 
Nuerology has looked at him, and he looks good.  They are doing a brain scan to see if there is any seizure activity on the brain.  He’s on anti-seizure medicine right now, but if he doesn’t have any signs of it then they will take him off.  After that, we’re done with them till he’s out-patient.
 
Nuerosurgery has not said that they want to do head surgery, and no news is good news.
 
Nephrology hasn’t talked to us at all, and I still need a consultation with them.  Charlie has good "out put" (that’s pee and poop), but he’s on diaretics.  They may discuss taking him off and seeing how he does on his own. 
 
I am exausted/hopeful/exasperated/angry/elated sometimes all on the same day.  I can’t blog till I get a laptop at the hospital, so that’s a few days off.  In the meantime, keep praying for my boy, and I can’t wait till the time when I can catch up with all the wonderful people who’ve been praying for him.  His recovery has been amazing, and I am so hopeful about the future. 
 
KM
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About takedeux

In one summer I had a baby who was hospitalized for five weeks, quit my job, and moved back to my hometown. This blog is about starting over.
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48 Responses to What I’ve Been Doing

  1. g says:

    Things are sound great. I will keep you all in my prayers.  t was so good to hear the news.
     
    g.j.

  2. Tracy says:

    I was worried but glad to see the update and the good news that he\’s out of intensive care and YOU are taking care of him.  Wow he sure has beat the odds and come a long ways huh!! Still keeping you and the family in my thoughts!

  3. WINDOW LIVE says:

    Good deal!  My oldest son was confused about nursing.  I kept saying I thought this was natural HA!  Hang in there I will keep praying.

  4. Becca says:

    So glad to see the update. I do understand about the liquids issue. A still has it and he is 18. Hopefully it is something that will recitify itself soon. Charlie is doing so well. One day at a time, I know that it is hard, but Charlie is a fighter and you are a fighter for him. If you have to play the system to get what you need, DO IT!
     
    Many blessings and you know how to reach me if you need an ear!
    Becca
    http://escape-for-a-sec.blogspot.com

  5. Sheryl-Ann says:

    Thanks so much for the update, KM.  I am really excited to hear how Charlie is progressing.  It\’s a long road ahead but I am sending LOTS of positive vibes your way.  One day at a time……..step by step…………….Charlie continues to be in my thoughts and prayers, and I thank God everyday for his complete healing.  Take care and stay strong.  Hugs.

  6. Shannon says:

    I\’m so glad to read an update- I\’ve been checking multiple times each day so that I know specifically how to pray.  Know that you and Charlie are being prayed for!
    Blessings to you,
    S:)

  7. Joell says:

    Hang in there.  Y\’all continue to be in my prayers. 🙂  Chin up!

  8. Stacy says:

    Woo-Hoo….Woo-Hoo!!!
     
    I am so happy to hear he is in step-down and you are now able to care for him.  Congrats on all of the great progress he has made.  Miracles do happen and He will show you.
     
    -S.

  9. Nora says:

    I am so happy for you guys!  Another step in the right direction.  Yeah Charley!

  10. Kathleen says:

    I am happy to hear that God is working mightily. Keep the faith.
     
    2 Corinthians 2:14a Now thanks be unto God, which always causeth us to triumph in Christ…
     
    Kathleen
     

  11. Hilary says:

    Wow!  Even if you are interrupted, you get to do new mommy things like changing diapers and caring for him!  How exciting!  I am happy to hear he is doing much better, I\’ve been thinking of you Katy…good luck (and thanks for posting! If its quiet, sometimes people assume the worst, so its nice to hear about your successes!)…

  12. Christine says:

    Praise God!  I will continue to pray for your family.  Hopefully he will learn to swallow and then maybe he will be able to nurse.  He is a fighter and in God\’s hands.
     
    Christine

  13. Unknown says:

    Katy,
     
    Am so glad Charlie is doing better.  I will continue praying for you, Charlie and your husband.  He
    sounds like he is such a fighter!  God is and has worked miracles for Charlie so far and he will
    continue to be there for you both and precious Charlie.  So glad you were able to give us an update
    and we will continue those prayers for strength for all of you!
     
    Take Care,
     
    Gwen

  14. Lin says:

    This is the GREATEST news.THANK GOD….I am so excited & happy for you & Hub.Now you can be Mommy & Daddy even if its at the hospital w/interuptions.I will keep all 3 of you in my prayers forever.Thanks for the update.Lin

  15. KEL says:

    I am thrilled at the wonderful news of Charlie\’s progress.  It sounds like they\’ve definately got you into "new" mommy mode, which can be fun/exciting/exasperating/aggrevating all by itself without the added doctors/nurses/therapist etc.  I will continue to keep your little man in my thoughts and prayers as he grows.~K

  16. Gina says:

    Katy, that is great news! Charlie has come a long ways and I know he will continue to do so.  Wishing you strength so that you can do all the things you need to do as Charlie\’s mom!!

  17. Nadine says:

    Whew!! I must remember that "No News is Good News!"
     
    I was beginning to worry.
     
    I am still with you. Hang there!

  18. Sarah says:

    I\’m so happy to see an update here! I was starting to get worried, but I was hoping that you had moved into the hospital and that was why you weren\’t giving us updates. 🙂
     
    I\’m still thinking of and praying for you all!

  19. Cindy says:

    So glad to hear Charlie\’s progressing well! I knew he was a fighter! One day and one step at a time – Hang in there.
     
    Hmmm….exhausted/hopeful/exasperated/angry/elated….Yup…you\’re a Mom! LOL
     
    Take care
    Cindy

  20. siobhan says:

    We will keep praying.  What a strong little guy!  He is just going to continue to improve and amaze!
    As always, positive thoughts and prayers for all of you!
    ((((HUGS)))))
    Siobhan

  21. Hollie says:

    It is so great that YOU are caring for him, there is no touch like a mother\’s. He will continue to be in my prayers.

  22. Tiffany says:

    Hey girl… just wanted to come by and catch up since we\’ve been gone for a while.  I\’m SO GLAD to hear little Charlie is doing so well!  The prayers are working and I will continue to pray for him!  Continue to rest when you can!  I moved in to the Hospital as well a few days before Baylee came home.  The nurses could tell I was so exhausted from running back and forth from the Hospital 4 and 5 times a day.  That was nice because she was able to be in the same room with me!
     
    Big Hugs to all of you!
    Tiffany 

  23. Gina says:

    Happy 1st 4th of July, Charlie! Sending you prayers and good wishes!

  24. Aimee says:

    happy to hear that you get to take care of your boy…sorry to hear that it\’s not at home yet…but i have been thinking of you…hoping that soon you will get to return to your home with your baby boy… 
     
    :o) smiles easy to give away they are free… :o) very contagious… :o) so pass one to anyone … :o) to people that you love… :o) and even to those you don\’t… :o) in no time the whole world will be smiling :o)

  25. K says:

    How excellent Katie!! You have a boy who has strength and determination… he\’s a fighter alright!!!  How amazing… the power of positive thought and prayer…
     
    You are loved … and so is Charlie and your hubby…
     
    Ciao bella… and continued blessings one moment at a time!
    KC

  26. Siobhan says:

    Amazing news – it would bring a tear to a glass eye (as my dear Mum would say)!  I am sooo very happy for all of you.  What an amazing little boy you have, and what a great testement to the power of prayer!  Wishing you sleep-filled nights!

  27. Steve says:

    Hi Katie,
     
    I\’m over from Christine\’s blog to wish both you and little Charlie well. We will keep you in our thoughts and prayers.
     
    BG
     

  28. Antonella says:

    Whoa Katy!! I can\’t even imagine how overwhelmed you must feel! You have so much goin on, but I\’m sure your really excited that you actually get to take care of him! YOu guys are still in my prayers!!
    HUGS,
    Antonella

  29. Carol says:

    Hi Katy, I\’m happy to hear that you\’re able to spend as much time with Charlie as you do.  It has to be the best thing for both you and Charlie.  How great for him to have a reassuring presence there! 

  30. Wahzat says:

    So I finally get in to wish you and CHarlie and your husband well. I pray for continued strength for all of you and God \’s continued blessings. Hope you are doing well in the hospital and that you get to go home soon.Go Charlie Go we know you can do it!Wahzat and her family!

  31. Christine says:

    Katy,
    I received this comment on your behalf at my blog where I had posted a link to your update. 
     "Please tell Charlie\’s mom that I will keep her in my prayers and I have a little saint in Heaven who will too!Little St. David…I\’ll request it!God be with her..I so remember that tired out feeling in the hospital.It is terrifying and tiring and you feel a bit of in another world..on another planet. Oh, God be with them. Amen Suzanne "
     
    I am continuing to pray for you and your hubby and Charlie.
     
    God bless.
     
    Christine
    As My House Turns

  32. Gina says:

    Just dropping by to let you know that I\’m thinking and praying for you guys!

  33. Unknown says:

    Oh this is such good news, him doing better!!  I\’ll continue to pray.  Hang in there, God is watching over you all.  God bless 🙂

  34. BP says:

    That is fantastic news.  I only hope it continues to get better as time goes by.Keep the updates coming as much as you possibly can.  It is entirely understandable that you aren\’t able to do as many as you would like, as I am sure you are exhausted, both mentally and physically.With love,Billy

  35. Jaysey says:

    Hope all is going well…still lighting that candle for Charlie, the fighter.

  36. Gina says:

    Hi Charlie! Sending you lots of kisses and comfort. Say hi to mom and dad for me!

  37. Ann says:

    I cannot imagine how hard it must be….it was hard enough figuring out how to do all the "mom" stuff without constant interuptions from only-semi-helpful-sometimes people.  It is good to hear you are doing ok, and Charlie is really getting along.   You remain in our prayers.

  38. Le Chat Noir says:

    Hi Katy,
     
    I\’m so glad to hear that Charlie is making good progress. Please try to take good care of yourself and hub too…I\’m sure you are doing the very best you can.
     
    Kerrie

  39. K says:

    Just stoping in to see how you are all doing… wishing you all much love and healing!
    Hope beautiful Charlie can come home very soon and you get to enjoy motherhood!
     
    Ciao bella,
    KC

  40. Sarah says:

    Just thought I\’d stop in and say hi and let you know I\’m thinking of you guys. Hope all is well.

  41. Jaysey says:

    Hope all is going well in the hospital!

  42. Hollie says:

    Just stopping bye and sending up prayers for charlie.

  43. Gina says:

    Just stopping by to let you know I\’m thinking of you all.

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