September 1, 2001

Update #4 

Good Morning, 

Since our new internet service provider is still having some problems, I thought for your sake and mine I'll number and date these notices. 

When Jeff finally got up on Sat. 25th, his fever was down to normal and stayed there.  I made him rest all day and he did not complain.  Just did stuff around the house and on the computer. 

Sunday he felt fine and went to church as usual.  After church, he commented his left ankle hurt.  I noticed it was a little swollen so we put an ace bandage on it and made him prop it up most of the day.  

Monday and Tuesday he went to school all day both days.  He did  well and was smart enough to even rest when he came home!!  His left ankle got a little better each day.  Joint pain is a common side effect of some of his drugs.  We got a note from the doctor though so Jeff can park the car up on top of the hill near one of the HHS buildings.  Students usually park down the hill in a big lot or even farther away down the street from campus.  Jeff commented that shorter walk did help. 

Wednesday Jeff went to school as usual but it was one of the hotter days.  His first teacher after lunch commented that Jeff didn't look too good.  Jeff said he did feel a little lightheaded so he can home for the afternoon.  HHS was to have been air conditioned this summer but it has not even been started yet!  Some of those rooms up on the third floor are unbearable.  

That same afternoon, the home health nurse came for her usual visit and blood draw.  When the count came back after supper, she had already spoken to Dr. Chu.  Jeff's hemoglobin has gradually been decreasing the past 5 weeks but now was at a point that Dr. Chu wanted Jeff to have a transfusion.  Jeff remained home on Thursday for rest (although he wasn't that tired) according to Dr. Chu's instructions.  Early Friday the 31st, Jeff and I went to Cardinal Glennon for out patient for 2 pints of blood.  A blood draw down there showed his counts were coming up from those neupogen shots I give him, but they wanted his count up to a certain point for his surgery on Friday the 7th.  This blood will boost him for sure and they don't have to worry next week.  Dr. Chu also said he could have his PIC line removed from his arm before we left CG.  He stated there was no reason to keep it in this week.  Jeff had already had a transfusion and would not need another before the 7th.  Jeff would not need the PIC line to take any meds this week either so since he'll get a port or broviac next week, it was safe to remove the PIC line.  Now (at least for a week) no plastic wrapping before a shower!!!  His arm looks different with just a small bandaid! 

We also learned something else yesterday about our son.  He has O negative instead of A negative blood.  St. Elizabeth's in Belleville said he had A negative before we left the hospital all those years ago.  Every medical paper we've ever filled out has been wrong all this time.  Guess I'll call our local doctor for sure.  The nurse yesterday was reading forms out loud before she started the transfusion and I heard her say "O negative".  I commented that he was A negative.  She stopped, checked back to the biopsy from July 27th and that blood type also showed O negative.  She called the lab to have them double check both times.  Sure enough, he's O negative!  Thank goodness they always type and cross match and I'm glad I heard what she was reading.  

Jeff was feeling fine last night but we made him stay home from the football game anyway.  

So, all in all, it was a pretty good week.  His homebound teacher brought some work by yesterday so he'll have some things to do this weekend.  I asked her how she did in my room and she rolled her eyes.  I guess a few did not behave!!  She may be sorry she volunteered to do my room!!!!   Guess that covers it.  I'll send another report next Sat. 

Love,

Marcia