2001
| January 6-11, 2001 - http://www.mp3.com/lilfox
Music Address January 6, 2001 My younger son tried to die on me this week - again - he just doesn't get that I won't let him go! They stuck a camera down to see what was wrong with his insides (ulcers in the esophagus) and he did not want to wake up (high ammonia). I may need to die my hair soon. Friday: January 5, 2001 He is now puking again - 100ccs but he kept some down. He has a severe headache - MRI tomorrow. He's been crabby all night. He evidently cried this morning - and they did not call me - which pisses me off. He talks once in awhile but he's been real quiet today - but not spitting up globs and we got the medication down him - I suggested crushing it up into liquid which he took (he had refused the pills - big things and his throat still hurts from the tube). I was really angry with them - suggested he go back to PICU since he had been more himself there (joking, energy, etc) and I will study the medication - there is a clue there. Somewhere. The difference appears to be NO TPN (which he has to have since he is not eating) and the diuretic (which he cannot stay on since it hurts his kidneys) so he's on a fluid push to clean out the kidneys. What a circus My older son will visit tomorrow - we shall get him up and walking and get him into the shower if possible and get him talked to. If he can't pull out of this blue funk he will need the anti-depressant medication - and the psyc team here is a bunch of twits. I hate to OK that - because they have so little knowledge of anything that they are doing and those drugs are so dangerous I tried to watch my Mystery show -my tradition for Friday nights - fell asleep - guess I was tired. Will drive home now (in the van again today). Will bring in the computer table tomorrow so I can type on my story later on. He wants family there - wants to be left alone - one of those days. I feel like that on occasion. Saturday: January 6, 2001 Now he has bounced back - waiting on the MRI (it was clear when they finally did it - the next week). Waiting to see what triggered the ulcers (all the vomiting?) He's eating today - will get up tomorrow and try to learn to walk again. He has a different disposition when fed. Seeing about a hearing aid and tinnitus device to help with the hearing loss (severe) and the tinnitus (ringing in the ear) (it may correct itself somewhat as the drugs cease). It was caused by Gentomycin. Cute. Nice antibiotic. His chemo will be a different protocol now since he cannot tolerate the aggressive course. I agree with that. He remains in remission. Sunday: January 7, 2001 He's much better in spirits at the moment and is beginning to eat. He cannot stand (last episode took him backwards) and we have to get him to a certain level for rehab. He gets TPN (IV feeding) - makes him puke - but we have to keep liquids in check. He starts new chemo Monday - less aggressive so he can handle it. Can't have anesthesia anymore when he has high ammonia - this time was too close. The ammonia of course came down on its own. (This is what caused the episode last time. Red flag that chart!) He spent several days in the ICU again. I sit and watch movies with him - for hours. Our record is three straight (6 hours). My older son came Sat and brought his synthesizer - he is getting ready to cut his first music CD (actually - go to http://www.mp3.com/lilfox and play night dance). He does professional quality tracks - techno music - ambient (you can run it behind things) and dance music. He is going to spell me on Tuesdays for awhile so I get to be home one night a week. That's good. Because my boys are close. Give my younger son a break from Momma. Monday: January 8, 2001 He walked today (his rehab got set back by down time). He has candy, soup, spagettiOs, crackers, soda, cider and part of a truffle. I will not be here Tuesday - his brother will. They will do chemo then - damn. Hope he can still eat! Something about the dog needs her teeth cleaned. He appears in much better spirits. Tuesday: January 9, 2001 Ok - the dog and cat (Trim and Ranger), having has $300 worth of shots and exams on Sat (and clearly overdue for their baths) both needed to go to the vet and have their teeth cleaned ($415.0). They either stay overnight - or - I don't get to the hospital. My older son arrived with his music (and ended up staying until 1AM because of course the younger one threw up all night long - a fact they kept from me). I called and was told "Hang up - You are taking a break!" I was also told to bring V8Splash and apple juice. OK. I watched TV - sort of, did dishes, two loads of laundry, picked up the new belts for the Kirby vacuum since I had managed to sweep up a razor blade - which caused the other belt to explode, hung up clothes, built a new clothes rack - and took the hangers off the weight machine, cleaned the kitchen, cleaned the cat pan and staggered off to bed. My night off. Wednesday: January 10, 2001 They did not tell me about the vomiting until I got there Wednesday night. He is still throwing up and was so wiped out that he fell asleep when I got there. Like a good Mommy I stayed anyway until about midnight when I staggered home and fell into bed. I get yelled at when I am late. I am yelled at for leaving early. Well, crabbed at. He doesn't yell. Actually, by the time I navigate the Dunbarton bridge I am wide awake and hunt for a movie - any movie. At this point I can recite the hundred or so we own so I really need to get out and find new ones. You would think.... I also read whenever he sleeps or I have a need to come down off the ceiling - just did a Georgette Heyer (big book). The boy is now on the new chemo - because he cannot handle the other one (less success when the only one done but he's been in remission for 7 months). He is going deaf with tinnitus (medication) - don't know how deaf yet - or much it will "heal" after the medication wears off. The MRI - at long last - shows that the Meningitis is gone - last 3 weeks of treatment for that. He was eating - had chemo - threw up all day - still throwing up. Drank 1.3 liters - and lost 1.3 liters. He cannot walk - can stand - getting stronger - but 20 lbs down at this point (about 201 instead of 245lbs but a lot of it is fluid - lots of Ivs running.) Thursday: January 11, 2001 - My birthday no less My son is off drink and food until about now (4 hours NPO) since he threw up for 3 days (new chemo). I had them use Adavan (sedative) and round the clock nausea medication. He sleeps. Good. I gave him a bath when I got here - he hadn't been washed for three days (just the part that gets cleaned because he is in effect sitting on a diaper - his muscles do not work). I washed his hair (fuzzball because he missed chemo for 10 weeks). I had housekeeping clean the floor (sticky). I cleaned the table. I was not pleased. They lost one port in his chest - clotted off - and he has a bid bruise on his chest where a blood transfusion hadn't gone in - it had gone under the skin. And they had not caught it. It should dissapate. Meanwhile, he has a peripoheral IV line and one working port. No surgery for awhile folks! I could not take that! My ulcer has arrived-----guess I call my doctor on this one - too much pain. Goes away if I EAT! Not good! So last night I had a rounded teaspoon of peanut butter (low fat) dipped in semisweet chocolate and finely chopped walnuts (sometimes I just want nuts!) My idea of celebrating my birthday (it was after midnight). That and a glass of wine. Oh, perfect! And here I thought I'd have dinner with Fabio!! Oh well! Finished reading another novel. You would think my eyes would cross - all day on the computer - all night reading and typing again. Ranger the big cat (11 lbs) is pissed - I have to give him antibiotics since he had his teeth cleaned - and he can't have canned food (I may not survive that!) So he ripped the bagels open and munched on one last night. Should have realized something was up when he didn't attack my door. He is pissed off!!! Hates the medication - I pick him up - he purrs - I pull his head back and shove the syringe in! Bad Mommy! He just scowls at me. I trick the dog to get hers into her little digestive system - in a piece of cheese - non fat no less! She loves chicken and cheese. The Fabio Special runs on E!Entertainment the 11th - I should be on it. Don't know how much. Extra! filmed for 15 minutes - I had 3 minutes air time. E!Entertainment did 2 hours - for ???? Should be fun! And I was just filmed at work - 29+ minutes - as a talking head! Web-Based Training! Introduction to Design Vision - the new GUI. This should be hilarious. I haven't seen this yet. However, the taping of Extra! and EEntertainment was good training for this! I just stared down the barrel of the camera - actually the red light - and talked. The Fabio website gets a write-up in the Feb issue of Yahoo Life! I think it's February. The Fabio site is heading to 100,000 hits. Most of them in the past year. Wow! Little did I dream of that when I started! Nice distraction for when I'm not stalking the cat. |
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