Saturday, January 22, 2011

An update from home.

We arrived home late this afternoon, after stopping by the pharmacy to drop off new prescriptions. We didn't accomplish all that we set out to in the beginning of this admission, but were close and there were some needed adjustments made.

Wyatt had a double lumen PICC line placed yesterday afternoon which will allow us to easily run TPN and saline boluses simultaneously. The saline (IV fluids) will be given in an effort to replace the fluids which he loses each day in his G-tube drainage. It's funny this intricate little system of his. His labs didn't initially look horrendous, like originally feared. But his body was showing the stress of dehydration in several noticeable ways. They started running saline through his line Thursday evening. Yesterday he was looking perkier and tolerated the PICC line procedure well, but was not urinating. The docs were slightly puzzled as to why his body was holding onto the fluids....his body obviously has it's own plan, but last night everything balanced out. This morning our boy woke up so peppy, happy, talkative and his lips were not chapped and bleeding for the first time in weeks. And he was peeing off the fluid. Those chapped lips were a constant battle that I've been trying my hardest to conquer...from chap sticks, to lip repair solutions to the oral moisturizing gels and sprays. His lips looked so good this morning. It's amazing what optimal hydration will do for a boy, even down to the lips!

In addition to hydration, the doctors focused on his medicines. Trying to weed through the list to widdle them down, one by one, packing it all into the smallest volume dose for his needs. Or, if compatible with TPN, they were switched and added that way. There will be some tweaking that needs to be done, but what could easily be done was.

Octreotide, the medication that we were originally told about and thought we were going to try while admitted was put on a shelf for possible use later. I'm not exactly sure why the hesitation in using it, I do know there was some concern about the serious side effects and how Wyatt's body would react, but we will be discussing it with his GI doctor here and with Dr. F in a short couple of weeks.

During this visit, we were able to meet with the new neurologist at the hospital, one that we've been told about, "The metabolics guy". And he was great. Clearly knowledgeable of Mitochondrial disease and talked to us about the situation a bit. I've found it's helpful just talking with someone who knows about this path that's involved with Mito. Not needing to offer anything more than their knowledge. Maybe it's the validation, recognition and understanding, that what we are seeing within our boy makes sense. We've been sent down this path for so many years and have heard "I don't know" so many times, been prepared by many that we may never know the name of what our son's body is so furiously battling against...and now we do. And to some, it does make sense, finally.

One sweet surprise to our evening yesterday was a spontaneous visit from a lovely family.  A family that's travelling a very similar path to our own. At first glance, as I was laying upon the parent cot and thinking about how tired I really was, I initially thought they may be our new roomates as they cautiously entered our room. But was pleasantly surprised. I feel as if I could have talked with this couple all evening....finding our experiences and stories different, yet so much a like. This friendly visit was just what I needed.

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1 comment:

  1. I was a few days behind on your blog, so was just getting caught up. I'm glad you're home now and that during the trip you managed to meet both Lucy's family and a good neuro!

    I wanted to add that last year Eithene (for a still unknown reason) developed severe swelling in her small intestine around the J portion of her GJ-tube.We identified it via a CT scan and then an MRI.

    We talked over pulling the tube and going back to G, but obviously couldn't for the same reason as you- she was on a lot of enteral meds at the time, and we couldn't give them through the G. We talked about putting in a separate surgical j-tube so there would be no long GJ irritating her gut, but her surgeon hates separate J's and said no. Eventually we spent several months using a very skinny preemie sized GJ tube in hopes that this would lessen the irritation and swelling. It was a HUGE pain, because any med that was a crushed pill dissolved in water would completely clog the tube, resulting in the need for a tube change.

    Finally the swelling self-resolved, and we still have no ideas what caused it. A few months later E had major bowel surgery (as a last-ditch effort to get her to tolerate feeds again) and the portion of her gut that had been swollen was removed.

    Anyway, that was all to say that -oddly- we've had the same thing happen. Unfortunately we have no useful advice (aside from don't try the preemi GJ tube- it's a ridiculous hassle), but we sympathize, and are praying for a good clear plan!