Induction Day 22

well it was a partial day 22 today.  Nathan still had his vincristine but they did not give the triple intrathecal therapy for fear of introducing the pseudomonas to his CNS.  We know there is a window for him to get this treatment but we don't know how wide that window is yet.  Nathan is not even in the room with the window yet so it has to stay open awhile yet.

Nathan is not doing very well today, lots of pain in his "tummy" and no appetite.  It is even a big difference from yesterday.  They put him on fluids this evening in order to get some nutrients into him as today he has had a cup and a half of soup and half of a juice - not very much for being on steroids for 22 straight days still.  Being on a steady dose of morphine he is pretty lethargic, not fully awake often and not up for much when he is.  Add to that the steady doses of Tylenol for his fever and it makes for a tired and groggy man.  The spark still comes to his eyes occasionally but we sure wish those eyes would stay open longer...

The doctors are still trying to figure out all that is going on with him now.  Nathan is showing once again what a tough kid he is as he puts up the consistent stream of new doctors wanted to prod and poke some more.  They are convinced that one of the problems is that his port is infected and it will finally be removed about 9am Tuesday.  The downside, of course, to having his port removed is that he will now have IV hooked up through his wrist and they want blood drawn daily which will have to come out of a needle in his arm - he won't like that much!  It should take up to 48 hours after the port is removed to clear the pseudomonos from him and that should take care of the fevers.  He would continue the full course of antibiotics after the port is removed which will be a week to two weeks of the piptaz and tobramycin after the port is removed so we are for awhile yet.

As for the pain in his abdomen, one of the things they are investigating is Typhlitis.  The symptoms don't quite match up but they are pretty close.  The biggest difference is that Typhlitis shows on the right side and Nathan's pain is on the left, but other than that he has most of the symptoms.  It may be nice to know what is wrong, but that is definitely not one of the things that you want.  We are praying that it is not this and not all of the doctors agree that might be this.  Right now we are waiting to go for an x-ray, we were hoping to do this before Nathan got too tired and wanted to go to bed, that didn't quite work as Nathan is now sleeping in his wheelchair.  At least Shelley has had a comfortable spot for awhile as she has taken up residence on Nathan's bed.

We had a great talk with Dr Strueby this evening who is a fourth year resident on the pediatric ward.  She patiently answered our questions and since we had a doctor giving us well thought out answers we ran the whole gamut of questions asking about everything that has happened over the last week.  Dr Strueby is one of the doctors that is not convinced it is Typhlitis though she won't rule it out.  In addtion to the x-ray tonight we will be scheduled for another ultrasound tomorrow and possibly a CT scan as they keep looking for what is causing the problem.  If you are confused right now thinking that it was pseudomonos that was causing all the problems then you aren't alone.  That is what we were initially led to believe but they no longer think that that is the case.

To switch kids for a bit, Carter went to the first day of his day camp this week and he really enjoyed it.  They went kayaking, wall climbing and swimming.  When he and Justin came up tonight and he was telling Nathan about his day it seemed to spark Nathan up for a bit.  Nathan was tired so we sent the kids (Johnathan and Ella has stopped by too) to the play room for a bit.  Nathan slept some more and then wanted to go join them in the playroom.  Before we could make that happen he was tired again and needed to rest some more.  You could see that he really wanted to go see what the other kids were doing but his body just wouldn't let him.

Well I've typed all this while waiting an hour for x-rays.  I sure hope they come soon as I'm running out of stuff that I'm willing to say.  The last thing that I do want to say is that Shelley and I, and our boys, are immensely grateful for the continued support from family and friends.  We love you all and hope that you will continue to pray for us.  Good timing away we go....