Claudia began the day with mom and said she was coughing a lot this morning and needed a lot of suctions. She ate her breakfast. Dad came next and said that mom was awake and alert and talkative with him. She ate all her lunch. The speech therapist came during lunch and decided that she would keep mom on the pureed food and even thicker liquids (honey consistency) until mom sees the neurosurgeon.
Mom went to the neurologist today. The facility, though they said they called the neurologist on Friday, had not called at all. I called the neurologist early this morning and made an appointment for mom for today. Here is an account of the visit to the neurologist:
-I explained how mom was getting more and more sleepy rather than more and more awake, as well as how mom is alert and “with it” when she is awake but extremely hard to rouse or wake up (if at all) when she is asleep. Sort of an up and down pattern of awake/asleep. I explained that mom had been on the CPAP mode of the vent for 1 ½ weeks approx. 24/7 and then had 1-2 nights of frequent apnea. Pulmonologist ordered CAT Scan last Thursday which showed fluid on the brain in the ventracles. Facility said that she had Normal Pressure Hydrocyphalus. Mom goes through periods of a few days awake then a few more days asleep or sleepy….
Neurologist:
-Mom is a high risk patient due to being on the vent.
-the longer mom is on the vent and not getting right amounts of oxygen, this can cause sleepiness
-Could be more of a respiratory, or artery, or seizure problem then fluid
-Ordered an EEG and full blood work including a look at Ammonia levels and Carotid artery scans, B-12 levels, Lymes
-Told us to get CDs of all mom’s CAT Scans from the hospital out here by us
-Sypmtoms she is having does not coincide with Normal Pressure Hydrocyphalus because that profile would be more consistent and stable and not up and down – asleep/awake…
-Neurologist did a neurological examination quickly and mom lifted her hands when asked to lift her arms, tracked his finger up/down/right/left with her eyes,
-When neurologist asked mom, “Who is this?” pointing to me, mom replied, “My mother” again!! The neurologist said, “She’s not your mother; she’s your daughter” and mom replied, “Oh yeah, that’s what I meant to say”!!!!!!!!
-The CAT Scan says there is excess fluid but not how much or how much more than last CAT Scan
-There is an increase in the size of the ventracles but not known why---can be due to normal shrinkage of brain from age, can be caused by blockage in ventracles, blood can clot slightly and cause a blockage…
-Neurologist suggests either a spinal tap, shunt, or cysternogram (scan of head) to determine what is wrong exactly
-Mom needs to see a neurosurgeon and her neurologist said no neurosurgeon out here will be too eager to take on someone who is such a high risk
-Neurologist recommends she go back to her neurosurgeon at North Shore (this is what we hoped for)
-She may need a spinal tap to confirm if she needs a shunt
-Neurologist called mom’s neurosurgeon while we were there and thankfully, her neurosurgeon said he would see her and that she most likely needs a shunt
-Neurologist said there is a chance that she may be too high a risk to do anything
If the facility doesn’t hear from the neurosurgeon regarding an appointment by tomorrow afternoon, then we need to call for an appointment.
Mom sees the neurologist 4-6 weeks after the shunt is put in. Not sure if it will be an external or internal shunt yet.
Dad and I stayed with mom for dinner. Her CNA fed her and she ate everything. I left and dad stayed with mom and set her up for bed tonight.
"Rejoice in the Lord your God, for he has given you the autumn rains in righteousness. He sends you abundant showers, both autumn and spring rains." Joel 2:23
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