Chachacha - May 1& 2

Sorry I've been negligent of my blogging duties. The happy blogs write themselves but the harder ones get stuck. I want to be able to post "Yay! Wow! Whoo hoo!" updates all the time but that is just not the case with GBS patients. I recently heard someone say, "Don't think of it as one step forward, one step back, think of it as a ChaCha!" So put on your dancing shoes, friends...

These updates are taken from Mom's texts...

Thursday May 1
"X-ray taken this morning better than last one on 4/19.  More space in lung. I guess they took it because his WBC jumped from 13.4 on 4/29, to 19.5 yesterday, to 23.3 today. They are doing urine, blood, stool, and sputum cultures now. He also had a fever last night of 101 which came down with Tylenol. First urine report does show something going on there.

Dad has asked for anti-anxiety medication several times in last 24 hours. That and the pain med is keeping him from being a decent speller. They went ahead and started him on vancomycin and meropenen today to kill whatever is going on.

Even though we know that there will be these plateaus with downward dips, I find myself discouraged. Wish we could get an ophthalmologist in here but Dr. LaMare says none of them visit hospitals. Maybe they don't think getting credentialed is worth the few patients they would get to see?

On a happier note, I am going to get Charlie tomorrow! The family will be out of town for 2 weeks for the parents to get training for the staffing business they are starting. Dave Giegler started on some shelves in the garage and I planted a few flowers:)" - Nancy


Friday May 2nd
"Dr. Dama (pulmonologist) said the goal to wean 24 hours was a little aggressive (he managed to wean for 14 hours) because of how the breathing reacted. He wasn't able to breathe with much strength. So he set pressure support up to 10 from 5. Will give him more help while he fights infection off. WBC 17 today so the antibiotics are helping while we wait for all cultures. So far there is a UTI and they are culturing the PICC line. So he doesn't have a PICC line now :/

Dr Krause is wonderful. She takes a lot of time and is intently managing his eye issues. She discontinued his eye antibiotic because it seems it wasn't helping and he was possibly reacting worse to it. So now the plan is to keep them moist at all times-with gel tears and cool compresses during day and eye patches at night for 8 hours. She said she was awake half the night thinking about how to help him with this. I told her that I want an ophthalmologist to see him and she is working on it. Right eye is looking a little better...eyes are swollen also so that accounts for some of the alarming look of them.

I made a large picture chart from the small one I got from the speech therapist. I'm coloring it now.  Hoping we can use it when spelling isn't going well - which is the case during this infection and with increased desire for pain meds." - Nancy


I was texting with Becky last night and forwarded her the dates that Tim (or Tim plus family) will be in Cincinnati, and she sent me the dates that she (plus family) will be in Cincinnati and we were happy to see they fit together hand in glove! This is too exhausting for one family member to shoulder alone.

We are also beginning to plan some respite trips for Mom this summer. Life has stopped and yet it is going on at the same time- grandchildren are growing up, seasons are changing, and batteries need recharged. (The first one will be the end of May for her to come see Aidan shine in his 5th grade play.) So we will be adding extra slots to the calendar. Any help with coverage is greatly appreciated.

If you need help signing into the Lotsa Helping Hands site, please feel free to contact the calendar coordinator, my sister Kristy via phone (217) 454-9295 or email kmrickert@gmail.com. She would be more than happy to help you.