2000
| September 4, 2000 He is out of bed for all of an hour. This after I nag him into eating some chicken and strawberries. For comic relief, I manage to clumsily drop his tray on the floor. And the sandwich lands on the napkin. Cute. I throw out the lettuce and tomato - which did not land on the napkin - and cut up his chicken. Also for comic relief I accidentally put too much salt on the chicken. I wash it off. Mustard. He wants mustard - in a packet I cannot open - on the side. I stab the damn thing with my fork. He eats - slowly. A child that would consume a big Mac in under 30 seconds. And arm wrestle me for my four fries - I always went after four fries. I also get a little (1/2 cup) of chocolate ice cream - full fat kind - into him. He has dropped from 245 to 207 lbs. He can have Hagendaas. [ photo - last year - Eagle Ceremony; the patient is on the right] I coax him out of bed - because I can rub his feet therefore he can now walk. The past three days we had to stop walking because his feet hurt. The drug rash was moving on down to the soles of his feet. He must walk - to retrain his muscles. To help his digestion which isn't sure what to do with food. And to get his lungs and circulation going. He must walk to come home. I want my baby home. At least at night. Even if I have to hit the Dunbarton bridge every morning to get him to the clinic for transfusion of ampho and then pick him up (and park him at my office - perhaps an inflatable bed?). He can ride home with me. We can run over and see his brother. I need some help here. I walk him around the nurse's station about 4 times and then get him around the atrium (outside the ward - a big loop I wheeled him around in a chair a few days ago) once. A big walk for him. Tomorrow we will try three ties around the atrium. He heads into the bathroom - for necessary activity - and he reports that he is now bleeding. Any cause for bleeding is cause for concern when you are running low blood counts. He gets into the shower (I'm there to check his fall but he is OK and he washes things down while I fetch a nurse). We need to check platelets (66,000 - up from 44,000 but still too low for chemo which needs 100,000). I am in a bathing suit - which I was changing into while he was in the bathroom - and the doctor chooses that moment to walk in! This must also be comic relief. I was behind a chair and a curtain - still.... Seems my son has a grand positive cocci - so we go back to Vancomycin. At the same time as the bolis - a two hour feed. Then the ampho. Of great! They tried the first version of the ampho last night - disaster - chills so bad I was afraid he would bite his tongue (we pushed Demerol to stop it) then a nose bleed from Hell - lasted an hour and so he got platelets. He threw up - normal on the TPN nutrition - he throws up at the beginning and when they speed it up and after it finishes. Needless to say - I was here until 5AM last night - which I do not want to repeat tonight. I have bills to pay. And things to do. Like catch up on the calendar. Finish moving the woodpile. Finish washing the kitchen floor. Work on a schedule with the plumber to get the sinks in. And argue with Banta for overcharging for the book. And fulfillment. And do work. I read through the CHIP seminar. I have marked up the Advanced chip seminar. I need to get it to the BU to proof and add/correct/ whatever. 90 days. I have 90 days. We do need to get to work - I am toting the NT around with me - I've had it for four days. Needs to be docked at the office. I need to check e-mail. Wonder how much of that I have? I get my son out of the shower, rubbed down with Aveeno and dressed in a clean gown. The nurses tend to the wound on his rectum (special stuff) and then change the port needle after settling him into a clean bed. He still won't get up when I am not here. Still won't shower when I am not here. And orders me into my bathing suit (so he can splash all over me). The need for Mommy's contact is evident so I provide it. They draw blood - so we can see if this is a false positive or not on the infection. And then they start the Vanco with the bolis. He eats a little chicken from dinner (and some for lunch) and a little broccoli and a little melon. He complains of itching - and it gets worse. The Vanco? He has developed the red man rash (you turn red) when on this before. We give him Benadryl and Tylenol - early. He fusses. We get warm blankets. I tuck him in. We joke - you have to get well. I have to go back on my diet. I am eating too much while trapped in here. Never mind that his birthday is the 12th. He thinks that's just great. His new goal, help mother get thin. At least it got a smile. Cynical or not. The itching gets worse. Something like hives. Within minutes, the itching gets out of control. Burning pain. My son manages pain and doesn't complain - until it breaks through his guard and by then it is out of control and it takes a supreme effort to beat it back. Benadryl not working - give more in the IV. He is tearful and upset - wanting to give up the fight. No way. My heart stops when he says this. I have to remain strong and calm while inside I am being torn apart to see the tears. I wash his face, and dry his tears. I get damp cloths for his backside and then go chase down the doctors and get Adavan - which will relax him - and the second dose of Benadryl. Actually I chase them down a few times. I want action - and I want it NOW. My child is in pain and crying. Only it takes 30 minutes to kick in. My soul is in torment. I consider Xanax. If I get home I will have a glass of port. Since I am here, I have chocolate. Even though Medifast has arrived. I discuss - tomorrow will be different. The Ampho is back to the one he tolerates. But the CT scan for the fungus (which can kill as surely as cancer can) is scheduled for tomorrow. This upsets him. The drink is chalk and the IV burns. I suggest they wait a day. "Out of my hands." They say. "He can simply refuse the procedure." I say. He already sends them dialing my phone when I am not here. He is not dumb. Enough already. He needs a trauma day off. So do I. My heart has been racing for two hours by the time he falls asleep. I am groggy - but I cannot leave. The Vanco has not run. And the Ampho has not started. And it is already 8PM. And I am running out of chocolate. |
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