Tuesday, December 29, 2009

Happy Holidays!!!

The Christmas holiday was good this year. Minimal family drama, lots of happiness and plentiful of gifts.

CJ is coming a long way. She's taken a few steps, eating on her own, talking a bit and had showered (she's probably had many more since then). They put it a pacemaker and a defibrillator and took the trach out. She will be going to a rehab facility in Nebraska as this facility doesn't care whether or no you have insurance or money. Their main focus is rehabbing their patients and giving them the best quality of life. I'm very thankful for facilities like this.

JB just received a letter of denial for being JC's kidney donor. JB had some mental health issues many, many years ago and through the testing, a few medical issues were found, so the board made the decision to deny her. While JB had made the decision to not donate based on these medical issues, she's very angry that the letter stated she was mainly denied due to her past mental health issues.

I've called the coordinator as I have a million questions before committing to the testing. JB and I are the same height/weight and she fell to low on the creatinine clearance scale for donation to be safe long term. I'm fearful that I, too, will fall low on the scale. JC and I spoke yesterday and we both feel that I should call my GP and have the creatinine testing done before I schedule anything at Mayo as we both agree that if I fall low on the scale, I will not donate either. Falling low on the scale puts me at a seriously high risk of kidney failure in 20-30 years if I go through with donation.

JC has been on the national donor list since this entire process started back in May (I think it was May), so she's not losing ground there.

Friday, December 4, 2009

Accentuating the positive....

So much to talk about and two minutes in which to do so....

My cousin, CJ, did another 180. It's been so completely surreal. One moment she wasn't expected to make it and her family had to schedule a care meeting to discuss what to do. Give her more time or say goodbye. CJ's mom pushed for another MRI the morning of the care meeting. The EEG taken the night before the care meeting coupled with some pupil testing at the same time made the neurologists' decision about 90% determined. The MRI....the doc said that if hadn't known it was CJ's scan, he would have thought it was done on a healthy human being. No brain damage, no white spots. It was decided that CJ just needs time for her body to get it all figured out. They put in a trach and a feeding tube and weaned her off the vent. She's back to breathing almost 100% on her own and has short periods of wakefulness.

Regarding JC's kidney transplant....over Thanksgiving JC and JB came to visit for a week. JB is almost decided that she's not going to do the donation because her creatine clearance is pretty low and if she does do it, she could go into kidney failure in 20-30 years. She's not had kids yet and she's not sure she's OK with the risks. The creatine clearance is determined on age, weight and amount of proteins (some crazy formula) and her clearance could float higher the longer she loses weight and keeps if off. JB has to have a colonoscopy and another CAT scan because they found something in her colon, so I'm guessing she'll wait until those results are in before she makes a final decision. Should she choose to not do it, then I'm sure JC will be calling me to get my testing scheduled.

Getting a bit worried about the mad hatter. Every morning she says her stomach hurts and sometimes in the evening. She's eating normal amounts and is drinking the same. BM's seem to be pretty normal and consistant. Sleep and activity patterns are consistent with her age. We'll have to take apple juice out of her diet again. And I'm wondering if she just has a nervous stomach. These started when she started Kindergarten. She went a couple weeks without mentioning once that her stomach hurt and then it started up again. And she's been saying that she doesn't want to go to school. But once she gets there she has a great time and enjoys all her friends.

Chunky tried to break his nose over Thanksgiving. He was playing ball with the mad hatter and my nephew P. Chunky leaped to catch the ball and instead caught the toy box with the bridge of his nose. Swelled up and turned purple right away. There wasn't any blood and he was rubbing, poking, picking at his nose and wasn't bellering in pain, so we opted to watch it and if he started hollering and we couldn't touch his nose, then we'd take him in. It bruised up pretty good and the swelling went down and his nose is still cute, pert and straight.

Soldier and I did a 5k Thanksgiving morning. It was my first ever!!! Back in my early 20's I picked up running with my best friend. I ran religiously every day and guessed each run was about 3 miles. I felt and looked great. Here it is 14 years later and I'm trying to pick it back up. I get to the gym 3-5 times a week. If I get there 3 times a week, it's for the 30 minutes personal training sessions and no cardio. If I go more than 3 times, those days are cardio and some free weights. I'm excited that I ran the entire 5k and did it in just over 40 minutes. I totally can't wait for Spring to do more. There is one tomorrow, but it's like 30 degrees out and I'm not OK running in that. 45 degree weather is one thing.