I began the day with mom. When I entered her room, she was sleeping soundly and peacefully so I let her sleep. I thought it best to let her sleep so she can be as strong as possible for the shunt surgery. No doctors were around to talk to so when I saw her nurse, I spoke to her. The nurse said that mom was nowhere on the schedule for the surgery yet especially since they were told to begin mom’s feeding which means that the required “empty stomach” protocol for surgery wouldn’t be fulfilled. I asked how long it could be and the nurse just said that mom gets 24 hour feeding here so until the feeding it stopped, and mom remains a while (don’t know how long that is) without food, no surgery in sight. The nurse said that mom’s blood pressure was low before so mom was hydrated but now it went up higher. As I sat beside mom’s bed, her alarms began to beep for the vent on and off at several different times. Finally, respiratory person came in to check the monitor. What was mentioned by the nurse to the respiratory person is that there is a hole/opening at the trach site at her neck (does this mean the stoma itself [hole in her neck] or does this mean somewhere on the vent/trach tubing, I don’t know) but this “hole” is causing a leak of air. When there is a leak of air, the vent beeps. When the respiratory person lifted the tubing a certain way, it evidently covered/closed the hole, which made the beeping stop. I asked the respiratory person if mom was on CPAP mode or vent mode and was told that mom is on the vent mode with the vent breathing for her. I asked if a leak of the air can show up as APNEA since I saw the word on the screen of the vent monitor and was told YES it could!!! The respiratory person said that the beeps and APNEA readings can be the result of many causes…one of which is a leak in the vent.
I just spoke with the attendant who said that mom will be having a spinal tap later today (don’t know when) and that will pull out some of the excess spinal fluid in her brain. At that time, we will see how mom responds to the release of fluid. After that, the head neurosurgeon will determine whether mom needs the shunt or not---most likely YES and an internal one. The spinal tap removes excess fluid temporarily and mom will create more fluid in excess shortly thereafter. They looked at last year’s CAT Scan on file and compared it to the most recent one and there is definitely a build up of excess fluid in the ventricles between now and then. Hence, the likely need for a shunt. The spinal tap also shows if the fluid pressure in the brain is ‘high’ or ‘low’ pressure. Low pressure means no shunt needed possibly and typically. High pressure means shunt is needed typically. The pressure level also determines the type of shunt needed. Mind you, the attendant cannot and will not speak empirically…not his role to do so. Therefore, since the neurologist and neurosurgeon previously said a shunt is likely needed, it will most likely be put in. The team here is studying mom closely—not only monitor readings but also how she responds cognitively. So far, she hasn’t shown anyone here much at all of what she is capable of cognitively. Mom was put on the CPAP mode of the vent again for the day at 11:00 a.m.
Mom had the spinal tap around 11:45. The whole procedure was scheduled to take about 30 minutes. Anthony commented that the neurosurgeon looked like Doogy Howser! Scary. Couldn’t be that we are getting older!! The neurosurgeon said we could see improvement immediately after the tap.
We went into mom’s room after the spinal tap and she was awake and looking all around at everything and everyone. The neurosurgeon said they forgot to come get us after the tap. We sat there for 2 hours waiting to hear from someone and then gave up and saw her room empty and went in. Mom was awake and alert and looking all around at everything. Claudia asked her how she felt and mom said, “Good” and then she said Claudia’s name. Mom moved her toes on command. She grabbed at our hats, shirts, hands…and inspected or read them. She grabbed the nurse’s tag and read her last name. She grabbed a comb and began to comb dads beard—to which Anthony (ever the fun person) said, “Oh mom, the procedure didn’t work. It turned you into a barber!” She smiled. We explored all the things she could possibly comb and mom smiled and laughed a little too. I found the neurosurgeon who completed the spinal tap and was told that the procedure went well. Mom had “normal low pressure hydrocephalis” not high pressure. The difference is: High pressure causes more damage like bruising on the brain, hemorrhaging, brain damage. Low pressure (what mom had) takes longer to expel the fluid (slower moving) and causes things like dementia-like symptoms, aphasia (inability to speak or speak correctly), awkward gait, inability to move much, confusion, cognitive deficits… The neurosurgeon who did the spinal tap said that the head neurosurgeon would talk about the shunt and put it in. We should see improvement once the shunt is in. Mom was trying to make us laugh and put the comb at dad’s arm and said, “Armpits” and smiled! We all laughed. The attendant was really happy to hear and see there was more progress. Claudia gave mom her IPOD and put the vegetable app on and mom named some of the vegetables. Mom grabbed dad’s Dunkin Donut ice coffee and tried to drink some but we had to take it away. Terry called and we put her on the phone with mom and mom said, “Put her on, put her on” when we took the phone away. She clicked her tongue after Anthony did it and asked her to. She answered yes and asked why and what…to various questions. Anthony said he had to leave for work and mom said, “I’m mad at you” and when we asked why she was mad, she said, “Because you are going to work.” I asked her who McClean Stevenson played on MASH and she said, “Colonel Potter” (wrong answer but not too wrong—he played Henry Blake the other Colonel). All of these events took place over the course of an hour.
Mom was tired after that and fell asleep on and off. In between, she stared at dad and held his hand. When she woke finally, she looked all around her surroundings. I told her what I cooked for dinner the other night and then I said we’d play a game…and asked her to touch her clavicle and she did! Then she fell asleep again. John came to pick up dad and bring him home.
A friend at the old facility told me that mom’s bed was filled today already. The building administrator has not answered any of the 5 messages I sent him between today and yesterday (he told me to contact him about specific things and said he’d contactt me back or call me).
Claudia, Anthony, Sammy, and Con came to visit mom tonight and they reported that she was asleep when they arrived but she had a normal looking, peaceful “mom” face on her. They woke her and she smiled in surprise to see them! She said, “Hi” and “I love you” to Sam without any prompting or anyone saying it first. She answered the question, “What is Anthony’s favorite thing to eat” with a phonemic cue (cucumber). She finished a silly song that Claudia sang. She was talkative (they didn’t always understand how to read her lips). She motioned for Con to take the mitts off her hands. They noticed that her movements, like taking her glasses off, was very focused and easy to do as opposed to before when every movement was difficult, calculated and full of great effort to accomplish. Her eye-hand coordination seems to have improved!
Hopefully, the shunt will go in tomorrow and be a successful procedure. Pray for God’s Will and Divine Intervention for us all please---especially regarding mom and the procedure and where she will be placed after this. Thanks so much for all the prayer. We love you all and pray for you too.
“…the word of the Lord is flawless…” 2 Samuel 22:31
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