Update on 12-20

I saw Susan yesterday. She already seems so much better: her speech is normal (not slow and slightly slurred), even though she tells me that her phenobarbital level is still around 55. She is able to walk without assistance, but is wobbly and ataxic and needs to be guarded. Her gait gets better when she patches one eye. She doesn't use a walker.

She had some twitches of her right hand, which she had some voluntary control over. In the past, she's had twitches there (in the thumb) which were thought to be seizures. She is also occasionally seeing colored lights that don't exist in her far right field of vision, which are transient and last a few seconds. I wonder if these could be seizures, but I just read that phenobarbital can cause visual hallucinations as well as anterograde anmesia. So, maybe it's just the phenobarbital. 

I have suggested acupuncture, and gave her the name and number of an acupuncturist, in case they don't have acupuncture at Spaulding.  That may help her body and brain heal itself more quickly. 

She is doing cognitive therapy with playing cards, including some numerical challenges which were -- challenging. Her memory seems better but she has some trouble still with short-term or "working" memory still and this is upsetting to her. She seems to know unchanging things like medical facts just fine.  For therapy yesterday, they had her bake chocolate chip cookies. They were good!!

Her appetite is picking up and she's often very hungry. She is very thin. When she arrived at Spaulding she weighed just 99 pounds, and she is 5'5". 

Monday 12/15/08 Medical Update

In no particular order - here are some random updates gleaned from doctors over the past week:

- One of Sue's colleagues suggested that she should have baseline hearing and vision test.

- Sue has been seen by Dr. Turon, a Neuro Opthamologist. Dr. Turon beleives that Sue suffers from two vision related conditions. 1) Simultanagnosia 2) Optompheris (did not get the correct spelling of this - do not know what this is). The doctor suspects that these conditions should improve over the next few weeks. We are supposed to make an outpatient appointment with Dr. Turon to follow up on these in about 1-month.

- Neither of the above conditions are related to the childhood Strabimus that Sue had. Sue is reporting double vision as she recovers. We beleive that this is because her brain has not yet learned how to supress the vision in one eye.

- The right eye lid is also a little droopy.

- The Parvovirus B19 lab results came back. The results are inconclusive to conclude that Sue had this virus in the past few weeks. The lab did not want to test because they felt the sample #2 was too old. They tested it anyway. The IGG of sample #2 was 5.84 vs sample #3 was 5.58. The IGM of sample #2 was 10.28 vs sample #3 was 5.56. It is suspected that the old sample may have been too old and thus the results are skewed and thus inconclusive.

- Sue has a slight fever today (@100 degrees). Otherwise feeling well and becoming more mobile.

- We have decided on the Spaulding Rehab Hospital. They have a Neurological Program and Tramatic Brain Injury program. Sue will be on the Neurological floor. We are tentatively scheduled to have Sue released from Neurology on Tuesday. This may be delayed due to another MRI or her fever.

- Sue just told me they are going to do a 4th MRI today.

Weekend Update

Posted by Melissa Bartick, M.D.

Susan's come a long way in just a couple of days. I saw her both Friday and today. On Friday, she got her electrodes removed, which had been attached to her head since she first got sick. Today, she had her telemetry leads removed. Today, for the first time, she walked a few steps to the shower in her room, with the nurse and I assisting her. She had her first shower in a month!

In just 2 days, she has gained alot of strength and dexterity in her hands, doing things today that she could not do on Friday. She was even able to stand for a moment unassisted. On Friday, it was tough for her just to transfer and sit in a chair, but today, she was in a chair and looked great. She is still on alot of medication to prevent seizures, so her speech is a little slower it normally is, but she is coming along.

Tuesday 12/9/08 Medical Update

Summary:

- Sue getting moved to Neurology floor this week (Tuesday?). They are aware that she is having intermittent seizures as she is weaned from Versed.

- Sue's memory is much improved from last week. Memory is still waxing and waning. Sue is now cognizant of short term memories. Sue's remembers Doctor Pillai Friday visit plus visitors from Friday. Long term memory seems to be @50-90% restored. She now understands that she is hospitalized at BIDMC - no longer needs to be reminded of this. This change is probably attributed to the reduction/elimination of Versed.

- Jack saw a series of right-neck muscle focal seizures on Monday @6pm. These happened while Sue was eating - not sure if this is related. Neurologist phoned in and advised Nurse to give Atavan. Seizures are being recorded on monitor on the 'F' lines (F3, F5, F7. F2, + ?). There are 5 lines on the EEG monitor that seem to correlate to the seizures. Sue also experienced 'thumb' twitching during this episode.

- Sue motor skills much better than last week. Could not hold photograph last week but is now able to manipulate straw to mouth when cup is held in front of her. Able to hold toast and feed herself. Not able to return toast to side tray. Able to up-arrow bed but having trouble locating and depressing down-arrow on bed.

- Slight fever @100 degrees @6pm.

- Sue started experiencing 'shivers' today. She claims these are because she is cold. ICU doctor aware of shivers and does not think they are related to seizure activity. Shivers do not display in same pattern as focal seizures noted above.

- Sue is now extubated. There was some initial concern that vocal cords were irritated or that she had a cough. I guess we should be watching this closely to make sure no infection is brewing. Sue is now talking. Slightly hoarse but communicating well. Pronouniciation is good but Phenobarbital or other risidual meds have her a little drunk.

- Physical Therapy @1x per day. Legs are weak to stand on but moves them well in bed. Possible right side affects of focal seizures. Right leg was hard to move last week. Moving ok now but possibly affected during focal seizures. Sue able to sit herself up and roll over in bed.

- Sue ate 1/2 bowl of chunky chicken, noodles, and carrot soup. A few bites of Macaroni & cheese. Some pudding, jello, and apple sauce. Drank chocolate mik, apple juice, and water.


Meds:

- Final dose of antibiotics today. Sue is now off of ALL antibiotics
- Received final dose of Versed yesterday.
- Keppra (Orally)
- Phenobarbital 200mg x3 per day?
- Ativan (as needed to control focal seizures. This just re-added to the mix post-Versed).
- Heparin belly shot @2x day
- Motron (as requested for menstrual cramps)


Doctors:

- Dr. ? (ICU - Not sure who is lead doc this week. Dr. Patel last week. Dr. Gilmartin two weeks ago.)
- Dr. Chrisnamurphy (Neurology - specializes in seizures in Women. Dr. Herman is back on in 1-week)
- Dr. Wright (Infectious Disease. Replaced Dr. Pillai/Dr. Eliopolous)
- Dr. ? (Ophthalmology - Double vision)


Tests:

- Positive test for Parvovirus B19.
- CSF #2 being checked for Parvovirus antibody for comparison to CSF #3.
- Still waiting on EEE, WNV, and others.
- Two HSV tests were negative
- No new MRI's scheduled.
- Chest x-ray @6pm

Parvovirus B19 infection

BIDMC test came back positive. This is Fifths disease and has been going thru the Stow school system.

Wednesday 12/3/08 Medical update

- The new Neurological attending doctor changed Sue's phenobarbital from one large dose per day to three boluses per day. This change seems to make a positive difference. Sue went about 24 hours without a seizure. Though she started to have focal seizures again this evening.

- There is now a chance that Sue may be weaned off the Versed medicine on Thursday and extubated on Friday. So we may not have to go the tracheotomy route.

- Sue reported some vision problems today. She has either double vision or decreased vision in her right eye. I think an ophthalmologist will be consulted.

- I spoke to the Neurological Fellow today about the results of MRI #3. It seems that MRI #2 showed 5-10 lesions. These may have been in five sections of the brain. MRI #3 showed fewer and smaller lesions. Something about 'flairs' - this might be the type of MRI images. Also something about edema, some of the abnormal areas contained water? I will speak to Neuroglogical attending (Dr. Chrisnamurphy) Thursday AM.

- We quizzed the Neurlogist on whether the focal seizures are really seizures or just twitches. They are pretty confident they are seizures. Many do not show up on the EEG because they are coming from very small sections? They do see some of the focal seizures on the EEG.

- Today is Dr. Pillai's (ID doc) last day.

Tuesday 12/2/08 Medical Update

Spoke to Dr. Patel (MICU Attending) on Tuesday.

- Preliminary results from MRI #3 were favorable. Dr. Patel mentioned that they still see inflammation but I sense that there is less inflammation. He started to refer to neurological terms like 'Flair' and I started to question him on what that meant. He recommended that I speak to the Neurologist to get the info first hand. I will make a point of meeting with Neurologist today. Let me know who is available to conference call on this update so that we ask all the right follow up questions.

- Sue continues to exhibit increased arm and leg movement. Her hand and arm movements are becoming steadier. She is still not well enough to write with a pen or hold photos but is attempting lots of hand signals. Sue can do thumbs up, thumbs down, A-OK, and the single finger salute (ask Laura Mc about that one).

- Neurology is monitoring EEG and says that seizure activity is much better under control. Current seizure meds include Keppra, Phenobarbital, and Versed. I suspect that these improvements may also be related to the decreasing inflammation (my guess).

- Sue continues to have 'focal seizures' on the right side of her face. These are not painful but she is aware of them. She frowns when she gets them so I suspect that they may have some hidden effect on her thought process. She gets quiet during these periods although she can still yes/no nod if prompted to answer a question during these events. I have also seem some involuntary right arm movements, the arm starts raising on its own. She did this the other day while sleeping and this was witnessed by Dr. Pallai who documented this into the medical record.

- Some on this list are contemplating whether the focal seizures are seizures at all or whether they are just twitches. Not sure, but they seem to be slightly better or shorter when Sue turns her head to the right.

- Dr. Patel has indicated that Sue will probably need a Tracheotomy on Thursday. It seems that Sue will not be weaned off the Versed for another week or so. We are coming up on the 2-week mark for the intubation tube. Dr. Patel said they could hold off it were 3-4 more days but he suspects that it will take another week to get her off the Versed.

- The Tracheotomy will be more comfortable for Sue. She is starting to protest the tube in her throat. They move it each day left and right but I suspect her throat is getting irritated so the Tracheotomy is probably warranted. The Tracheotomy will also facilitate Sue's physical therapy as it will allow her and her Physical Therapist more mobility and freedom of movement.

- Sue is not as sleepy as she was a few days ago. I think this is related to her getting used to the Phenobarbital. They have increased her from one bolus per day to three. I think the plan is to keep hitting her with Phenobarbital until the blood level is suffient to support the reduction of Versed.

- Sue was on ventilator setting 'MMV' most of Tuesday. I understand this to be a manual setting where Sue does much of the work. She seemed to handle this well. Her heart rate is slightly elevated (@100) as Vent tech guy said 90 would be ideal.

- No new lab results in. We estimate that they should be back late this week or first of next week. That will be the 15 days from Spinal Tap #2.

- We are waiting on the Nashoba lab for the Parva B19 virus (Fifths Disease). Fifths Disease is going around the town of Stow as reported by the elementary schools. Sue did have flushed cheeks the Sunday before entering the hospital.

- Sue was visited by her daughter Ally on Tuesday. Ally is 10 and saw intubation picutures before going in and was not frightened. This visit was good for Sue and Ally.

- Sue continues to have spongey memory. I understand that the Versed can do this to your memory. We pretty much have to re-explain what happened each day and assure her that she is in good hands.