Friday, April 7, 2006 - L.O.A.

Good evening all

We are enjoying a chance to be home, all together, the complete family - the first time in a week and a half!! Little James was given an LOA - Leave of Absence. This means that he came home this evening and we have to bring him back on Monday morning.

Yesterday morning his biopsy was performed. They were able to do this outside of the actual OR room, by using an empty room in the ward. This sped up the process as it did not look like OR would be getting around to it this week. We are very thankful that this last crucial test could be completed. If this does not bring results we are not sure what the next step will be. This afternoon we received the first preliminary testings from pathology and so far everything looks good. We have been warned that they do not like to give preliminary results for lymph nodes as they are usually inaccurate. So although we have heard something, we realize there is much more testing to be done yet, and the results could be completely different when all is done.

The beginning of James' week was rough, he often layed in bed fighting sleep with little to no energy, otherwise he was cranky and miserable requiring us to walk with him. For some unknown reason he does not like us to sit while holding him, and when he's attached to lots of cords, walking is difficult. As the week progressed so did his condition. Wednesday evening we seen a big change when suddenly he actually ate something, drank decently and slept very good. Thursday he had his "operation" which went well and he was ready to go again afterwards. Last night they discovered that his IV was no longer in his veins .. and it must have been like that for quite some time ... his whole arm was puffed up (full of fluid) to three times it's normal size. The nurses had not noticed since with little ones they wrap up the arm from elbow down to prevent them from pulling out the IV, and then he had his gown on so the upper part wasn't visible. It looked awful and it must have felt awful too because even after they took the IV out he would not use that hand ... it was swollen so big he couldn't move it. They decided not to put another IV in because he had been drinking better that day. If that kept up they would wait for the results of his test to see if another was needed. What a treat!!! No more running after him with the IV stand; he has two hands/arms now, he can crawl again, climb, move ...etc. He was also allowed to leave his oxygen and heart rate sensor off his foot most of the day. Today was a good day, he was able to get out and charm everyone again, and even when we weren't out at the playroom at least he could play around in the room ... he discovered the best place to play was in the storage area under his bed. He looked good today and drank good. He still is not eating well, but that is a battle all in itself. He continues to tucker out easily, but definitely could handle more then before.

We received the preliminary results late afternoon and with that they said he was doing well enough that we could go home for the weekend. Yes ... I had said we would not do that again until he was eating and doing much better. But ... this time we received a LOA ... which means that his bed is still there (altho it is unlikely we will get the same room again, since we were enjoying the luxury of a private room, due to the fact that at the beginning of the week he was in isolation). We do not have to go thru Emerg to get back in, we go directly to the ward if we have any problems. If all goes well then we come back Monday morning to be there for regular rounds. They felt this might be good for him and worth a try, seeing as nothing is done on the weekends anyways.

So we have our pampered little boy home now. I knew we'd have a battle when we got home, and it starts already tonight. In the hospital he was usually tuckered out enough by evening to sleep in his bed (but often not until 9 to 10 pm) ... unless he was absolutely miserable, then I was stuck with him all night. But he would not sleep in his bed for naptime. He would sit there and fight sleep and just wouldn't give up. A couple minutes in my arms and he'd be sawing logs ... but if I try to put him down he would kick up a storm and then I wouldn't be able to settle him in my arms either. So ... he slept in my arms for naps. I didn't have anything else to do, and he needed the sleep. All routine went out the window and anything went .... so even though he is cranky now, he does not feel he needs to go to bed just yet .... altho mom thinks she would love to!!! :)

Thank-you all for words of concern and your prayers.
Good night all ... hope you have a good weekend!!!