Tuesday, October 19, 2010

I fear the news tomorrow brings

But first, the news we learned today:

Thanks be to God, James does not have acid reflux.
His bottle feeding is still inconsistent.
His g tube will be surgically placed a week from Wednesday (which is probably "today" for most of you reading this).
After the surgery it could be 2-7 days before he comes home.  ([big parenthetical break coming] They've been telling us 7-14 days for about 25 days.  That's kinda frustrating because I no longer trust the doctors when they give me a time frame, but I also think that 25 days ago they thought James would be home with a blank stare, monitor, ventilator, limp neck, and tightly folded thumbs.  My little boy with big blue eyes just keeps wowing 'em.)
Sometimes babies with neurological problems (ie James) who have the g tube end up developing acid reflux.

Tomorrow:

Tomorrow we learn the results of the thrid EEG, which James had today.  As you may remember, EEGs tell us about brain wave activity.  His first was done while he was on the cooling pad.  As an NP said, "It's telling us he's cold," meaning no activity.  His second was done shortly after he was warmed.  It showed "quite abnormal" activity. 

I hope to God this third one shows much improvement. 

The other day a different doctor did rounds with James.  She had met him when he was first admitted, and when she saw him looking around, tracking things, finding her when she spoke, moving his body, and lifting and holding his head she was very impressed.  "That's very good," she told me with a firm nod of her head and a slight smile.  I've learned that's a pretty strong statement coming from doctors on our floor.

He is such a little miracle boy.  I'm sure I don't seem like it, but I'm very grateful for all that God has given back to us.  I always talk about wanting more and more but I recognize that we have already received much.

But now I'm gonna ask for more.  Please pray that God heals my sons brain.  Please ask that James be spared acid reflux and that his surgery goes well.  Please pray for success in his bottle feedings.

And if parenthetical isn't a word, just let it slide.

8 comments:

  1. Bonnie,

    I am a member of ThirdFriday. I have a special needs child myself. I would LOVE to talk with you about your experiences recently....when you're ready.

    ~Praying for you all and for the nurses and surgeons for a safe, successful surgery~

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  2. It's amazing what God has done in your little boy's life. Absolutely amazing. I am standing with you and believing and asking for more!! Continually praying!!

    Sarah Hedman

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  3. Thank you for the updates.
    Praying praying praying.

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  4. Isn't it frustrating to have to wait so long for the results of tests (a rhetorical question of course). A number of years ago my sister suffered a pulmonary embolism leading to a coma. The day she had her MRI and EEG at 7 A.M. we literally sat around until nearly 5 P.M waiting for the results (diffuse swelling over the surface of the brain, no brain activity). I suspect that it would have taken the neurologist less than 5 minutes to read them given what they looked like. They re-did the EEG the next day while we watched and even a layman could see the flat line. While I realize that any one patient isn't necessarily first in line, it does seem to me that sometimes there are patients whose results could wait another half an hour and other patients who perhaps, simply out of compassion, should be dealt with more quickly. The parent of an infant who's needed as many procedures as James would seem to me to fall on that list of people who could be given higher priority than, say the person with Bell's palsy or tinnitus.

    I hope the results are encouraging.

    I'm sure the prospect of James coming home stirs up mixed feelings. It's going to make your life easier in that you'll all be together again. It's going to make your life harder because you're going to be taking care of all three kids (including one with special needs). I certainly hope all of your helpers remember that you will continue to need someone to help "lift up your arms" (a reference to the Old Testament reading this past weekend).

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  5. "Parenthetical" is a word...
    and my family is praying for ALL of your intentions...including strength for you and your whole family.
    Pax Christi, E

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  6. Still praying for you! I'm in the area today and wish that I could come see you guys, but I have the sniffles. :( Still thinking about all the miracles that have happened already and it's pretty exciting! :)

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  7. came here via Clare @ Battlements of Rubies. Praying all goes well.
    xxx

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  8. me too... love and prayers, epsilon

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