September 2004
Following a weekend in ICU and still unable to determine the cause of 'episodes', Chad was moved to room 342. Despite our request to have him near the nursing station, they put him on the west wing as far from the nursing station as possible.. Monday night was his first night in that room and he had a horrible night with multiple 'episodes'. We discovered him early the following morning alone, profusely sweating, rapid and shallow breathing, slumped down in bed with a very high fever.... no Tylenol, fentenyl, cooling blanket, ice packs...nothing had been done for him all night. As a result, we were able to have a CNA assigned to his room at night so he is never alone. Tuesday started a better period for Chad, he was more alert and laughing and actually was able to get in the cardiac chair a few times. The 'episodes' returned on Sunday, the narcotic fentenyl is the only thing that relieves the 'episodes'.Chad was seen by a dentist on Sunday. Thank you Dr. McGraw for volunteering your services. He was pleasantly surprised at how good Chad's mouth looks and gave some advice on oral care and some supplies for cleaning. Chad's Aunt Marilyn's friend, Toni, came and did Reiki. When she was done, Chad was relaxed and in a very deep sleep.
9/6-9/12
The week started well as family and friends crammed into Chad'd hospital room to help him celebrate his 24th birthday. But the 'episodes' and high fevers continued throughout the week. His doctor briefly tried a new anti-spasticity medication hoping that it would relieve the fevers and rigidity that accompanied each episode. The trial was short-lived and doctor's fell back to the use of fetenyl. Ths staff reported that Chad was a bit vocal during his bath on Tuesday night...thanks for the note Norma. Chad had a visit from his private occupational therapist, Michelle, on Wednesday but his severe spasticity made any type of therapy difficult. The hospital staff has ordered a new set of wrist & hand braces to assist in treating the severe contractures Chad is experiencing primarily in his right hand. We are expecting delivery of the splints by next Monday.
9/13-9/19
Chad's new hand splints arrived Monday and have been in use for 30-minute intervals all week. Already his hand & wrist contractures seems to be slightly improved. This week seems to be as last was with respect to the numerous daily 'episodes' of fever, ridgiity and sweats. Chad's doctor's have introduced 'Keppra', a second anti-seizure medication to his regime this week (in addition to Tegratol). The game of 'musical meds' continues. Chad's weekly blood draws, urinalysis and chest x-rays have revealed that he is suffering from another urinary tract infection. The family's request for a custom 'transport' wheelchair was denied by the Kaiser physician this week with the justification that Chad is NOT transportable yet...the wheelchair has a TWELVE week leadtime...go figure! Also denied this week was the family's request for 'dynamic' splints for Chad's severely contracted feet. This topic will need further discussion as there is NOTHING currently being done to either correct the current contractures or prevent further contractures.
9/20-9/26
This week can be summed up with the not-so-simple statement: 'The Episodes Continued'. For those caregivers present during one of Chad's episodes, we can only offer our thanks that you were there to help him. And as caregivers and loving family we can only wonder how Chad is able to take the physical strain from these events, day after day. We received an email this week from Karen and Kelly (Chad's new friends in Oregon). Karen explained how her daughter Kelly suffered through nearly-identical episodes until they were able to figure that she was having an allergic reaction to Tegratol. As of Sunday, September 26, Chad is OFF Tegratol! We thank Karen for sharing her story. Chad's neighbors and friend, Elke & Steve, are putting together a Casino Night Benefit for Chad. They have assembled a lot of enthusiasm amongst their caring friends and the event, scheduled for November 13, is shaping up to be a lot of fun.
9/27-10/3
Finally a GOOD week. Chad has not had an episode since early Tuesday morning, that's five full days and counting. Thanks again to Karen and Kelly for their advice (see last week's summary), it may have done the trick...time will tell. Chad had a visit from the staff nutritionist this week who has increased his feeding (intake) to compensate for continuing weight loss (Chad is down to 157 lbs.). He is dealing with another UTI this week and the IV antibiotics to go with it. In fact, he has had his IV moved THREE times this week to three different locations and is trying to recover from another skin rash caused by a nurse who used Tegaderm to secure his IV despite the fact that Chad is wearing a wrist band notifying the staff oif his allergy to Tegaderm. It appears that the muscle relaxer Dantrium is becoming more effective as Chad shows less tense limbs and just looks better. Lastly, Chad has had THREE doctors rotate through this week. We had become accustomed to staff doctor rotations approximately every week to 10 days...but three rotations in one week...so much for continuity.