Sunday, December 30, 2012

I haven't been able to post lately and that is a good thing overall.  I have been very busy with taking care of Dominic because he is very awake without the morphine in him.  As long as we are up on his oxy codene and Tylenol he is a happy smiley baby, but unfortunately once we get to the third hour ( he gets a dose of each every four hours) he starts having great difficulty.  It seems he went off of the morphine too quickly and so he is having significant withdrawal symptoms.  He sweats, yawns, sneezes, poops and screams until the next dose.  It is difficult and tiring, but in the grand scheme of things, I know it is transitory and that we are on a good path going in the right direction.  Weaning him off of the other medications will have to be a very slow process.  It also really makes me understand just how much those medications can change their personalities and how long they can have a physiological effect, which gives me hope that eventually we will get back our same Dominic.

Overall though the progress Dominic has made in the last few days is stunning!  I went from not being able to hold him because of his pain just a couple of days ago to now holding him a good part of the day!  Dominic's favorite thing to do is walk around the hospital with me.  I am still trying to take this all in!  I am walking around the hospital with my baby in a stroller and he is smiling and kicking his legs, it is all too good to be true!  The biggest part I am getting used to is well, my,baby has a face now that people accept.  I am so used to being in the mindset of dealing  with peoples' reactions to his old face that I am find myself still in that mode.  I am ready to explain to everyone about what his story is when it ends up not being needed, they just look at him and smile and say, "hello cutie, hello little man".  Some people are curious about his scars because he has so many and so they may ask then, but otherwise we go places now like one of the crowd, we don't attract stares.

I am anxious to post pictures but cannot over the weekend on this floor as the computer room is closed.  I will post pictures of the little man and his progress on Monday if time allows.  How can I ever thank you enough for continuing to pray and support us!  Hopefully, if there are no more big surprises, hopefully we will get to go home in about a week and a half.  I hesitate, and I know they do too, in saying a date because we know the pattern, two steps forward and one step back.  I am hoping to get him stable enough to go home and then continue care once he is home with home nurses or the hospital near us (I am really pushing for home nurses).  He will come home with a pic line and a g-tube that I am learning how to work (did you know you can vent their tummies to let unwanted air out?  Greatest invention ever!).  So again thank you!  Blessings!

13 comments:

  1. Lots of smiles here at the Towers's house listening to all this good news! Of course you were to receive a Christmas miracle, it is the season after all! God is good! My father-in-law hallucinates when he is on morphine. The doctors sometimes forget how powerful these drugs are and that their side effects are so severe that they are not worth using. Praying as you wean and detox Dominic. Enjoy discovering your sweet little boy all over again. Merry Christmas!

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  2. My father, mother, and grandfather all had a hard time with morphine after surgeries - nasty stuff, it seems. Thank goodness he's off of it.

    Mary, I started following Dominic's story when Abigail from Abigail's Alcove asked for prayers for his surgery. Then, yesterday, I read the first posts from the caring bridge site. Dear Lord, what a story! From those first posts when you received such a dire prognosis through the ultrasounds and then the birth! What a strong and faithful family you have been! How wonderful to see things turn for the better at each step! I was in tears reading it. May God Bless you and Dominic and the family.

    BTW, is everyone feeling better now, from their fevers and such?

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  3. So glad to hear good news. The withdrawal effects are difficult - hopefully they improve soon. It is so great for both of you for you to be able to hold him and go on walks. I am sure that the physical contact and interaction does wonders for his healing.
    Wondering if he could have probiotics to help him with replacing good bacteria to counteract the downside to the antibiotics?
    I am curious if he gets breastmilk through the g tube?
    God Bless and I wish all of you some rest! We continue to pray for Dominic and all of your family.

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  4. Glad to hear that things are continuing to go well with the little guy--I can't believe he's in a stroller already! It must feel so good to be out and giving him a new sort of stimulation. Pretty soon, you'll be taking him home! Has the hot dog priest been by since? I bet he would love to see the effect his (and others) prayers have done!

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  5. Your posts are a real treat.
    I am happy, happy, happy to hear he can go on stroller walks.
    I'm sorry he's happy withdrawal symptoms. Poor little pumpkin.
    Looking forward to seeing more photos.
    Will keep praying.

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  6. I meant to say I'm sorry he's having withdrawal symptoms.

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  7. We had to vent Johnny's g-tube during entire feedings. Not an easy balancing act, but it was the only way he would eat orally.

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  8. I am so relieved that he is doing better. Dominic was so beautiful before his surgery (I recently showed your video to my stepdaughter who could not stop saying how cute he was); I'm so glad that no one will be able to deny his cuteness going forward! Enjoy your perfect little boy; you both deserve every smile, every kick, every giggle.

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  9. So glad everything is finally moving along and you have a plan that you can actually start to move ahead with :) You all remain in our prayers still and i'll have to keep those rosaries coming!
    May Christ's light shine ever brightly,
    Carrie

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  10. Wonderful news! We are still praying :)
    God Bless and HAPPY NEW YEAR!
    Katrina
    "Behold, I make all things new."

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  11. Hi Mary,

    So good to get the great news on Dominic's progress. We are thrilled you are busy with that little angel. Give him a big kiss from us. We know it's been a long adventure.
    We hope and pray everyone is all better.

    Lots of love and blessings to you all.
    LOVE,
    The Bone Family

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  12. Awesome news to read as we are in the 18th straight hour of our drive home. God is so good! Praying!

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  13. What awesome awesome news! My ankle is healing up and we can drive now! I would love to visit you for a brief visit before you leave MA. We have a small gift for your family. Let me know if this is at all possible some time this week.

    You can email me at marijannna1111 (at) gmail (dot) com

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