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.

Sunday, March 4, 2007

A very good weekend

James has had two very good days and we are very, very grateful. Somehow the weekend just filled itself up with good things and I didn't have much opportunity get on the computer.

Saturday morning, Dr. Wiermaa came in to check on him. When she asked how he had done Friday, I told her about the diarrhea and how he had such a hard miserable time in the afternoon. I described his behavior as being 'like an angry violent teen-age boy in a tiny little boy's body". She just turned to me and said, "Steroids." Then she went on to explain how steroids can sometimes change personalities. She did say that it doesn't last, but that sometimes it can by very hard in the midst of it. She also said that people on steroids tend to need less sleep and that, at some point, they also have an increased appetite (we haven't seen this one yet!). In addition to this, James' discomfort from other aspects of his treatment could make the personality change bigger than it would otherwise be. That seems to explain what happened to James on Friday--the discomfort from all the treatment issues, especially stomach-cramping with diarrhea, pushed him beyond his pain limits and instead of being weepy and crying, like he has in the past when he was in pain, he got angry and aggressive. Please continue to pray for us to have wisdom to help James stay comfortable. Your prayers this weekend sure seem to have made a big difference and we are learning a lot about how we can help him over the coming weeks and months--we just need what we've learned (and more) to come to mind when we need it!

By Saturday, the area seemed to be pretty well dug out from the storm (although there are still HUGE mounds of snow pushed off to the sides of roads and sidewalks). James was taking a good afternoon nap and Owen and went for a walk OUTSIDE!!! in the SUNSHINE!!! We went about three blocks to a nearby Whole Foods Co-op where we picked up a sandwich and some salad bar stuff to share for lunch.

After a late lunch, we moved from the PICU to the regular pediatric floor. They actually have designated "chemo" rooms which have some special features, like private bathrooms. In our room, James has a hospital crib (sometimes we call it the baby jail, because it has a top and the sides can go all the way up to keep him safe inside), I have a regular hospital bed which is very multi purpose (of course I can sleep on it flat--it is actually quite comfortable-- and we can prop it up part way (great for snuggling James when he is needy) or all the way when we pile in to watch TV. Owen also raised the bed to full height for a better view looking out the window!

When we were moved to our new room, James and I went in style, riding in the hospital bed!!! Owen was going to take a picture of us coming around the corner, but he decided it would be more fun to follow along and count points for the nurses for each time they bumped in to something with the bed! By the time we got to our new room, we were joking with the nurses, asking if this was St. ****'s Spa and ChemoTherapy :*). I'd rather laugh at the days to come than fear them.

Once James was settled in for the night and Owen and I had arranged everything we could, we snuggled on the multi-purpose hospital bed and watched an old Erol Flynn WWII flick. We called it 'history' (note to self: check to see if it was based on a true story).

Saturday night wasn't quite as easy as Friday night. It certainly wasn't bad. James woke up a few times, just needing Momma and that was okay. The third time (of three) we sat in the rocker in our new room, opened the drapes and really watched the sun rise over Lake Superior! Beautiful! Then we thanked God for the clouds as the sun rose a little higher and the daylight dimmed a little, closed the drapes and climbed back in to bed!

One of the times I was up with James, his nurse came in to let me know that his lab results had come back and his White Blood Count was below 2 and we had to treat James extra carefully because he is now at greater risk for infection. People coming in to his room need to take extra precautions if they have or have been exposed to illness. We need to keep his door closed. The air system in his room has been switched to positive pressure so that the air flows pushes out most of the bad germs. And we need to be careful about what comes in to his room.

Sunday morning was a little slow going, simply because of the late night (due to the history lesson) and three times up with James. We almost got going in time for the family to arrive. The whole gang came together and I think the nurses were a little concerned with how full James' room became!

We had a wonderful time together and some of us picnicked on a sloppy joe feast provided by a special friend. We shared stories and food and just enjoyed being together. Back in James' room (he couldn't leave, so Hannah stayed with him), we sang some hymns together and James clapped along with the appropriate songs. It was a special treat to see him enjoy the music he has likely been missing very much.

After a little more close family time, Vern headed out with most of the children--leaving Hannah behind to help this week. On the way down with the children and some of the things we were sending home, we ran into other special friends who were coming to visit! They brought sweet encouragement and fresh fruit and apple juice!

Once we got all settled again, Hannah and I put together a little CD player for James, since we now had batteries to run it. Now that the music is playing, James is having a great time in his crib listening to it! We also enjoyed some delicious broccoli cheese soup from yet another friend.

We have so much to be thankful for!!

Love, Stephanie

1 comment:

Mom said...

Thanks for the catchup for the weekend. It was great to read about everything. If you know, can you give us some idea of scheduling of his upcoming chemo treatments? Also the MRI results when the Dr. has more definite info (Vern said it was tentative until she conferred with other Drs.)
Love and Hugs,
M/N (Special smooches for J.)