Monday, January 31, 2011


Ugh. He's sick again. The Young Prince is ill again or should I say, still. I spoke of how it started last Wednesday evening, and by Saturday he was feeling quite recovered. Normal foods, lots of X-Box. Yay! He had asked for some special things for dinner Saturday night, it was just the two of us. But his choices were all fatty ones, like a triple Whopper from BK, or a meatball sub. Finally we settled on fried haddock from Scolas.

Now, of course, you (and perhaps the folks from Children's Hospital) would think me quite mad. Fried foods? Are you insane? Well, yes, but that's not the point. Only those that deal with Tom on a close level know how hard it is to say no to him. And believe me, I say "no" plenty. With conviction. And often I "win". 

But that night he was firm about not wanting ANYTHING else. Perhaps another mother would have been stronger, resisting his persuasive ways, especially since his health depends on it. Now, it's not that he has a food allergy, or he has a heart condition, or high blood pressure. In fact, Tom has always been pressured to eat, to gain weight - etc. Fried, fatty, greasy foods were never a problem.

But these last several months something has gone wrong in his GI tract. It has nothing to do with his liver, not directly anyway. I supposed his three episodes with C. diff. may have "weakened" his gut, maybe the flora aren't happy, or something, but since November, Tom has been getting sick every two weeks. So the theory for now is that fatty foods are exacerbating the problem, and he should refrain as much as possible.

So why oh why did I let him have the fried haddock? Lesser of three evils I suppose. I checked the fat content as best I could of all the choices, and the haddock was the winner. So, he had some haddock, maybe one or two french fries - if that - and one onion ring.

He was fine all night long, into the morning, when he had cereal and milk and then we were off to church.

This was a special occasion. It was to be the very last sermon of our pastor, the Rev. Keith Weekly. Keith had been our interim pastor for about two and a half years. This is the way it goes in a Congregational church. Our permanent pastor had retired, and the typical procedure is that the area conference sends a substitute pastor until the church can form a search committee, and select a "settled pastor". This takes time, the forecast is usually for one or two years - give or take.

Tom at his Confirmation, exactly six weeks to the day after his transplant.
 So, while we all hated to see our former pastor (Rev. Larry Zimmerman, he had been there for 30 years!) leave, Keith quickly became part of the church family and things flowed along fairly well. 

Tom and Keith
Keith was great about getting to know everyone, and he got to know us well, probably by default, because Tom's illness got to be quite a big deal. When we were going to be part of our first Liver Life Walk, Keith made sure that this event was well publicized in the church, which was fantastic, between free-will offerings and a Youth Ministry-run car wash, Christ Church United raised roughly $2,000.00 for "Tom's Team".

And when Tom had his transplant, Keith was keeping the congregation updated during the lengthy surgery, and he came to the hospital to see Tom post-op.

So naturally, we wanted to be there for his send-off yesterday. And there was a luncheon. And cake. Actually two cakes, one was a pretty one - welcoming a couple new members into the congregation, and the other was Keith's "Happy Vacation/Retirement/Thank you" cake. While the first was pretty (and tasty), the second was amazing! Decorated like a professional - wish I had a picture!

So, you are all wondering, what did Tom have? Well, he had some cake, then he had some pickles, one small piece of sharp cheddar, some red peppers...nothing very substantial. And by the time the lunch was over, Tom was helping put away chairs and clean up, but he really wasn't feeling well.

Was it the pickles and peppers? The cheese? The cake? The punch?  Who knows, but he was home taking showers and feeling crappy. NOT horrible, but not great. He tried to do some homework, tried to play some X-Box, but eventually he felt worse and vomited around 5:30.

No dinner, just some fluids. Pills went down OK, but by 1:00 am, he was up sick again. Then sick again at 2:00 am.  Staying home from school again, but managing to be on his laptop for now.

So, while the transplant would ensure a good level of health, we knew that the first year would be tough. But this is not what we or the doctors had anticipated. While these bouts of vomiting don't seem to point to anything life threatening - it's very, very exhausting. Especially trying to keep Tom's mood up, keep him motivated for school. And that's a whole separate issue. The consensus from Boston is that these periods of illness could have a strong emotional component, and a combo of anxiety and the foods are bringing on the illness. It fits, but I'm not sold entirely on this theory.

It's hard to get through this transition period, because in some ways it feels like we're going backwards, or rather starting on a whole other path of health problems. While God is guiding these transitions, at our church, and in our lives, I understand the church part, but this stuff here? I'm clueless.

No comments: