Fri 21 Nov 7pm:
We will use this post for Daily Updates. The Consultant Comments post will be used for a dialogue between consulting doctors and others on potential treatment options. We will use other posts: Med List, Meeting notes to keep reference items at top level.
From Jack:
Thanks for getting this blog going. I went home to be with the kids Friday PM and Saturday. Grandma Lucas has the home fires burning. Our family & friends network kicked immediately and the kids are doing swell.
Thanks to the Dream Team of medical professionals that have been helping me sort through this maze. We rallied an impressive team for the 'family meeting' on Friday. I am getting world class support from Sue's colleagues in the medical community. Sue is receiving this direct benefit.
I am trying to sort thru the details so I can post them here. I encourage all to post here directly so I do not have to repackage. You can post anonymously if you have any reservations. I can provide tech support to anyone who needs help getting started with blogging.
Sat 22 Nov 12 noon:
Temperature hit 102 Fri night / Sat am indicating fever, she had a cooling pad on chest
There were some episodes of high heart rate Fri night / Sat am, and reacted to being turned over during cleaning
Feeding tube was connected late Fri, interrupted Sat Am in prep for Abdominal ultra-sound, possibly to asses Liver, previous report was Liver had 2x normal enzyme level
During visit, Sue was moving her legs , pulling them up and stretching them all the way out, like normal sleep restlessness but appeared to have good muscle control
Nurse reported some involuntary hand clasping of covers
Sun 23 Nov ( from Melissa B)
I saw Sue this morning. Both eyes were open and blinking but she seemed to have no awareness that I was there. She was being sedated and the nurse told me not to stimulate her because she'd been pulling at things when stimulated. She was laying on a cooling blanket, and her temp was being monitored (rectal probe, presumably-- she was sort of on her side)-- was 101.4.
I live about 1- 1.5 miles from the hospital. I have offered to let the Boyles use my house as a homebase while in town. There is room for all 5 of you to sleep (including Sue's mom).
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15 comments:
Sunday 11/23/08 Good News!
Jack and Nancy Lucas just visited Sue and she woke up and communicated with us. Sue is intubated so she cannot speak. But we were able to establish a communication system by nodding yes or no. Sue acknowledged about 20-30 questions.
Sue is not in pain but is very scared. We reasured her that everything is going to be fine. We told her that the kids are fine and that Grandma, Renata, and the Stow Mom brigade have things under control.
Sue is probably most concerned about her condition. She cannot move her arms or legs right now (but we saw her do this a couple of days ago). We told her that she is under sedation and that she is restrained so she cannot disconnect her EEG leads (again). We explained that the combination of antibiotics and sedation meds is why she is feeling the way she feels. We told her that her MRI is normal and there is no brain damage. We explained that it would take a few more days of fighting the infection for her to get better.
Sue was very happy to know that all her medical community friends are participating in her recovery. We continue to get great support from Ryan, Thomspon, Nancy, Melissa, Nick and others that continue to advise us.
We hugged Sue and held her hand. We actually made her smile even with the respirator down her throat. Sue then drifted off to sleep after this half hour exchange. Keep those prayers coming!
Jack, Your Sunday exchange with Sue is great news!!
what were the cell counts in the two taps?
Our prayers are with you and your family...I am happy to hear she was communicative on Sunday..that is very reassuring!! Where can we send cards?
Respectfully, Kelly Corrigan, MD. Nashoba ED
I work with Susan at Lowell General hospital. We are all praying for her speedy recovery. Its wonderful that she woke up and was able to communicate on Sunday. She is constantly in our thoughts.
Dr. Shaolay Jiang
Tue 25 Nov Update from Jack:
Neurology:
- Neurologist is now Dr. Susan Herman. She is on the same team as Dr. Pang. There are 8 docs in the group and they will rotate.
- Keppra - still being used. They cannot easily measure this in blood so they are adding other meds
- Dilantin (Fosphenytoin) - They started this again but may discontinue it again.
- Midazolan (aka Versed?) - IV drip. This seems to be making a GOOD difference in controlling the focal seizures. This drug is a short term solution since it only stays in the blood a few minutes. They need something to replace this med. This med is similar to Valium and Ativan.
- Next new drug => Doc may recommend Phenobarbital to replace Midazolan.
- Doctors continue to ponder the root cause. Still waiting on labs to rule out viruses.
- One long shot that has been discussed is 'Paraneoplastic Syndrome'. This would be caused by a tumor somewhere in the body that is secreting neuro active chemical. There are Research Labs that we can use to test for this. They asked me if we would be interested. I think it is just blood work. Is there any downside to allowing them to test? This sounds like cancer so we should rule this out if possible.
- Liver tests show enzyme in liver is coming down. Infectious Disease docs very happy about this.
- Sue is to have a 2nd MRI today. This is to compare to 1st MRI.
- Nursing Manager at Nashoba has disclosed that she found Sue blue and not breathing. I have been asked if she had a heart rate at the time?
- Temperature is down to 98.5
- Sue wiggled toes for ID docs
- Sue closed eyes on command for MICU doctors on Tuesday AM rounds.
- Sue is comprehending a lot more now that seizures are better controlled by Versad/Midazolan
- Current meds may be affecting Sue's thinking
- Sue is not aware that she is at BIDMC. We tell her each day. Sue does not seem to remember LGH, Nashoba, or Anna Jacques Hospital but she does remember Melissa Bartick who she worked with at Nashoba.
- Sue remembers husband, kids, mother, father, sisters/spouses but not neices/nephews
- Sue remembers Dr. Mollering and Dr. Eliopolous (from residency program). This is good as she did not recall Dr. Eliopolous last week when he visited her on Tuesday afternoon (when she first came to).
- I asked her if she knew who Barrack Obama was and she did not. Last Tuesday she knew Barrack Obama won the election.
- Acyclovir and Doxycycline are the only two antibiotics being used. Others have been discontinued.
- Ranitidine being used to comfort stomach (similar to Prevacid)
- Cooling blanket is still being used
- Heparin still being used to thin blood. Both legs are still wrapped in those leg things to stimulate blood flow in legs.
- Hands and feet are cold. Nurses are calling this Raynaud's Phenomenon (the part about the hands & feet--basically vasospasm in the small arteries--vasospasm means constriction of the small arteries).
Sue never had this before that I am aware of.
- Feeding tube being used for Repleat with Fiber (60?)
- No longer on Ativan, Vancomycin, Ampicillin
- Ventilator => volume is 500, rate is 12, Peep is 5, O2% is 40, Spontaneous Breathing Trial result was 63. Sue breathed for about 10 minutes then gave up. They are thinking about removing vent after the tweak seizure med. I think they want her off later this week if it can be done.
- Sue moved arms during a seizure on Tuesday afternoon.
Great update - thanks for keeping us posted. I also don't see a down side to testing for paraneoplastic syndrome, seems unlikely, but certainly doesn't hurt. The viral test results will be interesting to find out. She does not seem to be too dependent on the ventilator accord. to your notes. 40% oxygen is not a lot that she requires so that's good. How was the 2nd MRI?
Is she still febrile?
Will pray/give thanks for Sue tomorrow!
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