Thursday, February 3, 2011


Home again, home again, Jiggety-jig.

The bleeding within Wyatt's GI system appears to have stopped. After receiving several shots of vitamin K in his belly (not fun) his clotting factors are looking better. We will now inject more vitamin K into his TPN daily with the hope that it'll get his numbers back to normal. He was sent home with IV protonix, as well.

We haven't received the results of the Echo or EKG just yet, as well as the cultures of his G and J tube drainage. I plan to call tomorrow and ask if they're back yet. The doctors didn't feel the need to hold up discharge on account of those pending results...and we certainly were not disagreeing.

Our Boston trip is still on. The GI doctors here have all agreed and said that their job is to "keep him stable" so that we can get to Boston. I'm not sure how I feel about that right now. Is he really too complex for them to weigh in on the situation anymore? I'm anxiously looking forward to meeting with Dr. F. To see if he has any new insight, ideas, tricks up his sleeve. But meeting new doctors is complicated. Trying to relay accurately to the doctor so that they understand the medical history, our family dynamic, our feelings and thoughts, our goals. Hoping he'll talk with us and not at us. I'm unsure if going under anesthesia and doing the manometry is something that should happen right now. And have questions that we need answers to before going through with it...what will we get out of it? How will his treatment change depending on the results found? Is the risk of anestesia complications worth the benefits of this test at this point in time? And we want to make known that we don't want to (and won't) put him through this test if it's just for knowledge....if there is not a helpful treatment plan beyond what we're already doing. I have numerous thoughts and concerns running through my mind. For all I know, Dr. F may agree with our concerns with anesthesia at this time and decide to wait on the manometry. And we won't know until we get there and speak with him.

Lots of questions, lots of emotions.

For right now I plan to busy myself re-organizing the medical supplies to accommodate the new additional bulk. Wyatt sits comfortably watching one of his favorite shows, Minute to Win it. Cheering. He's very happy to be home, as am I.

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  1. How lovely that you are home again (jiggity jig - so cute!).

    Be assured that the Lord has called out prayer for you for this upcoming trip and for all the ?s you may have/ the Dr.&patient(family) relationship/ and the tests. (In my case, He prompts me to 'copy' my 'comments' (like this one) to an email document which then reminds me to pray.)

    You probably thought of this already but...perhaps you could get out some paper (or use notecards, the computer, whatever works for you) and just jot down all the thoughts, feelings, questions, observations as they come, no matter how random they are. Afterwards, you could organize them more coherently. Kind of like laundry; we gather all of it up and then we sort it. Just a thought.

    Also, could you call the Dr's office and find out how he likes to approach things? Sometimes the staff (front office or nurses, esp. who work with the Dr's) have a feel for that Dr's 'approach' (so to speak). (I'm just about to go to a new Dr. and, while my case is not even a tenth as complicated nor as dire as Wyatt's, still, I face some of these difficult 'new doctor' questions and concerns).

    sending much love,
    and hopes for you & Wyatt to get some refreshing rest,

  2. I hope your Boston trip goes well. Tufts is a mile or two form Children's (where we are), and I've never met Dr. F, but I constantly hear fantastic things about him. I hope that your experience will go as well as that of others!

    The manometry is such a difficult test, both physically and perspective-wise. We had negative experiences and therefore negative associations, but many others find it to be very illuminating for their GI challenges... I hope that if you go through with it that it is helpful. I agree with asking what the drs will do from the test's results- both if it shows severe motility issues AND if it shows nothing... will they treat him according to presentation, or according to test results?

    Anyway, we will be thinking of you and Wyatt!

  3. Hoping your Dr. visit (today?) went well!