One Big Adventure
An opportunity to log in some of the thoughts and activities of our homeschooling family of eight. We love books and good food and aspire to a Christ-centered, multi-generational, agrarian life.

Wednesday, March 7, 2007

Yesterday, today, and the MRI results

Yesterday was kind of a tough day for James. Sometime in the morning, he started itching around his central line and ended up pulling a stitch loose causing some nasty looking bleeding (honestly there isn't too much bleeding that isn't nasty looking in my book, but there is something really nasty about bleeding on the chest near the sight of a tube that goes through my two-year-old's chest and into his heart, if you know what I mean!! :*)). It took a while to figure out that it was the pulled stitch that was bleeding, but it was a relief to figure out the cause. I suppose it is one of those things that it is better to have happen in the hospital for the first time, rather than at home!

James also has been leaking some unusual things from his g-tube. At first, it was easy to dismiss it as 'all those medications he has been taking'. Yesterday, we got beyond just saying that and want to know for sure. His doctor thinks it is ileus, which I understand is an irritation of the stomach and intestinal lining (feel free to help me out here), caused, in James' case by 'all those medications he has been taking', plus the chemotherapy. I think the hardest part of this journey for me is going to me seeing things that don't seem right, but not being able to 'put my finger on it' so we can help James get comfortable again... Once we get to where we are at least asking the right question and providing some level of comfort for James, things begin to fall into place. All this is important in being able to advocate for our children with special needs and illnesses, and I can see where some parents could easily fall apart here.

In addition to the bleeding and g-tube issues, James has just been really irritable. It has been a real challenge to read his pain cues. To state the obvious, this is so much different than his previous surgeries! His pain now is more intermittent and sometimes it is hard to discern when he needs pain relief. Please pray for me that I would be wise and quick to discern James' need for comfort. Some of James' discomfort may have come from him being desperate for a bath. James normally loves baths, but by the time we got him his last night, he was a tired, miserable, uncomfortable, cranky and cantankerous little guy.

This morning we woke up with a new lease on life--joy in the morning--and reinforcements in terms of helping resolve some of James' challenges. Today, James saw the physical and occupational therapists who brought us things we can play with James and a mat we can use to let James play on the floor with. We also had a visit from a nurse wound specialist, who gave us some tips regarding stoma/g-tube care. The child-life specialist came by to introduce herself and find out how she could help. She returned with a laptop that we are hoping will allow us to post photos on the blog--don't get your hopes up too high just yet, though, I have some technical hurdles to overcome first!

We also learned that because of the ileus, we will likely remain in the hospital for another week and we are currently hoping to return home next Friday. Tonight James is getting a unit of blood and another of platelets. Tomorrow is big day for James as he will have a bone marrow aspiration, spinal tap and two chemo treatments. Please pray that they would be effective for James, but not cause side effects.

My mom reminded me that I never really got back to the results of James' MRI from last week. The MRI itself looked good, but we were actually waiting for the call from the oncologist as to how she was going to call it. When the family came down on Sunday, they brought our new digital camera which has some pictures of James with his Bell's Palsy. Dr. Wiermaa was happy to look at the videos which provided as much or more evidence and confirmation that the Bell's Palsy and the Leukemia are unrelated. So, that is Dr. Wiermaa's call and we are glad.

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