Thursday, December 9, 2010

Moving forward.

The doctor did call with the previously mentioned results of the blood work that was taken after my last blog post. I've procrastinated on updating and have been finding myself a bit overwhelmed with trying to process and deal with the new issues that have been arising within out little boys body. He's been very close to pain free since starting TPN, as close as he's ever been. And it hurts my heart to watch as he begins to struggle with the returning pain that had once gone. It's hard.

The infections that were tested for did not show anything significant. Right now things are 'stable' in the liver. No worse, but no better. The GI doctor is following his weekly labs closely and will monitor things in that way for now.

Last week included a lot of driving. More specifically, to and from the hospital. I have posted about Monday's happenings.

*Tuesday we talked with the GI about some of the tests that had come back (liver enzymes elevated, billirubin elevated, etc, etc, etc.). Wyatt also started vomiting and crying each and every time that we gave him his multiple medications, multiple times a day. We give his meds through the J portion of his tube, which goes directly into his intestine. He's not "supposed" to be able to vomit, reflux or 'feel' anything. I can't even count how many times we've been told this. And, yet, do you know how many times it has happened? Wyatt could tell you...it can happen. It does happen. He complains of tasting the meds, feeling it going up his throat to the point of gagging and vomiting. And it leaves the kid feeling really rotten. Not to mention, we can't gauge how much of what med he actually expelled or absorbed....which is important to know.

*Wednesday he had a previously scheduled GJ tube change (good timing). He did amazing. It took quite a long time as they were struggling to place it where it needed to be. The radiologist noticed a few issues  within the xray that indicated that the motility in the area had slowed waaaaay down again and was not moving adequately. That evening, after talking with the GI doctor, we started two more medications that would help with any bacterial overgrowth that may be happening.

*Friday we talked with the doctor (again!) and headed back to the hospital for an xray to check placement of the new tube. He was continuing to struggle with keeping his medication down and being comfortable.

*Monday morning the GI doctor decided to try placing a longer GJ tube deeper into the intestine. Hoping that this would make it nearly impossible for the fluids going into the J tube to 'backflow'. The IR team and radiologist were confused and, it appeared, even slightly annoyed about having to place a longer tube when the current tube was technically where it's supposed to be. Even if it wasn't working for him. Apparently this doesn't happen....or so they were leaving me to believe. Wyatt, again, did amazing. Taking deep breaths and talking to me about the holidays while the radiology team foraged new areas of his GI tract to place the longer tube. It, again, took awhile and they were not very optimistic when talking with me about it's positioning. Then again, they weren't very optimistic from the beginning. But the BEST part of all of this....it seems to have worked! His medicine is staying down and he's much more comfortable when we're giving them. That is at least a bit of success, in our eyes.

Since getting the tube issues sorted out we started running trophic feeds like I discussed in my last post. Wyatt's handling it well, but we're back to draining the g-tube (stomach) more often than not and he's now expelling an interesting range of colors. It gets a bit tricky for him trying to walk about the house while being tethered to several tubes. With his rolling backpack that holds the TPN that is running 20hrs a day, the backpack that is holding his entereal pump/pedialyte that is running 18 hours a day and also the drainage bag that he carries or is hanging from his waist, he can get a little tripped up at times. We spend portions of our day untangling the tubes from the twisted mess that they very easily become. But we know that running something, anything, no matter how small the amount, through his GI tract is important. So, we keep moving forward.

One foot in front of the other. One day at a time.

Christmas is quickly approaching and the tiny humans are becoming restless with excitement! I love this time of year, with the twinkling lights, the festive music and family traditions that are carried out each year. Our family enjoys driving around in the evenings to view the creatively decorated homes in the area. Already this year we beared the frigid temperatures and donned multi layered clothing to attend a local theme parks festive activities. It was very COLD, but fun! It brings me great joy to watch my children experience this magical time of year with such enchantment, just as I did and still do. It's special.

Happy Holidays!
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1 comment:

  1. Glad you were able to solve the problem with Wyatt suffering from his meds!!

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