I began the day with mom this morning. As I entered her cubicle, I found her asleep and the nurse and aide were getting ready to change her. They told me I could quickly say hello. I said hi and mom turned to my voice with her eyes closed. I opened her eyelids and she looked at me briefly but then went back to sleep with a huge grin on her face. Then I left the cubicle so the nurse and aide could change her.
Explanations from yesterday regarding the High and Low Pressure situations and spinal tap. Sometimes a spinal tap can take the place of a shunt because it releases fluid from the brain and also, therefore, pressure on the brain. In mom’s case, it doesn’t appear that the spinal tap will take the place of the shunt based on what the neurologist and neurosurgeon told us originally (that could change but it seems unlikely). A spinal tap reveals how much and what kind of pressure is on the brain. It also can reveal the need for a shunt or not. It can tell whay type of shunt is needed and, I suppose, how much fluid needs to be expelled which would dictate how to set the shunt to work (revealing how much work the shunt needs to do). High pressure means that the fluid is so much that it is bursting to get out and therefore pushing on everything and anything in its path to do so. This means that the fluid is compressed and hard and strong and therefore able to leave impressions on the brain which could cause bruising and brain damage. Extracting high pressure fluid is a quick procedure because the fluid is so trapped in the space it contains that it is ready and waiting to burst out as soon as possible. This type of pressure can be very damaging. Mom does NOT have this type of fluid pressure on the brain. Low pressure means that there is excess fluid on the brain too, but the fluid is not as compressed and squashed into the area it contains between the brain and the skull so it does not press on the brain as hard as high pressure fluid does. The side effects of low pressure, while impressionable (like dementia-like symptoms, aphasia [inability to communicate correctly], awkward, difficult movements…as mentioned yesterday) are not long lasting once the fluid is extracted nor are they as damaging in length of time or impact on the brain. Mom DOES have this type of fluid pressure. Though the spinal tap mom had expelled a lot of the fluid yesterday (which took longer to expel since there wasn’t much pressure behind the fluid—making it trickle rather than gush out), it is expected and assumed that mom’s brain is no longer capable of expelling the fluid that naturally moves around the brain naturally. Therefore, she will need a shunt to do the job of expelling fluid. How does the shunt work? Basically, our brains are naturally surrounded by spinal fluid and this fluid circulates and expels itself out of our heads through the nasal cavities, throat, ear canals down the throat into the stomach and through the digestive system and out the body…the shunt will take over the job of the mechanism in the brain that sends the fluid out to these places to be released and expelled through the digestive system.
Just spoke to the neurosurgeon who said that mom will be getting a “ventricular abdominal shunt.” This is done by making a small incision on the side of the head further back from behind the ear but at the same level as the ear and a small 1”-1 ½ “ incision into the skull. Then a valve and tube is inserted and attached to the head and the tube runs down through the head, throat, and into the abdomen where another 1”-1 ½ “ incision is made and the end of the tube is stabilized or attached in the abdominal cavity. In people mom’s age, the shunt system usually goes in once and is there forever. In some instances though, the shunt system can become clogged, infected, malfunction, or become otherwise broken. In such instances, the shunt needs to be replaced. The neurosurgeon does not think this will be the case with mom. Also, the neurosurgeon asked why mom is still on the vent. The neurosurgeon asked what put mom on the vent in the first place. I explained everything and said that mom was on the vent from June 2010 through December 2010 when she went onto the trach collar. Then I told the story of the decanulation, punctured lung and the set back from January through present and then about the most recent setbacks over the last 2 months or so. I told the surgeon about the CAT Scan and the revealing of the excess fluid on the brain. The surgeon then asked again, “So I don’t get it. What does all that have to do with her being on a vent?” I was dumbfounded and began to think that perhaps I hadn’t answered the question correctly…silenced, I just stared and the the surgeon said, “That all has nothing to do with her still being on or needing the vent. Never mind.” I explained that we want mom weaned from the vent and the surgeon asked if that was happening in the facility and why mom was still on the vent again. Mom will be scheduled into NEXT WEEK’S surgery schedule!!! The shunt will not go in before Monday and probably not even Monday. The surgeon mentioned likely mid-week but didn’t know. I can call that kind woman from their office next week I bet so I will do that. The surgeon asked about therapies mom has been getting and I told him nothing. She had been getting about 5 weeks of PT (physical therapy) but that stopped in December. Feeding therapy but that had stopped too. The surgeon asked me to describe the decline in ability and I spoke about how mom’s ability to feed herself, swallow, speak, stay awake…declined over a 4-5 week period rather than progress upward and forward. The surgeon then left.
The respiratory person came in next and who looked to be as old as my niece, Samantha!! (a young teen!!). The respiratory person said that they tried to take mom off the vent totally this morning but she couldn’t tolerate it. Yesterday, mom was taken off the CPAP vent mode when they came in to do the spinal tap and was left on the vent mode for the remainder of yesterday. Mom was put on the CPAP vent mode today at about 11:30 a.m. Pray she does well and gets off this vent once and for all. It would open so many options for mom. Mom’s nurse mentioned this morning that mom was very contracted in her limbs and asked what therapies she has been getting. I told her the same that I told everyone else and then told about the therapies we do for her. I asked about doing them now but the nurse said wait and don’t jostle her much before the shunt goes in.
Mom is sleepy today. When I open her eyes, she looks around but doesn’t talk to me. She seems to be either dazed or ignoring me on purpose. She won’t talk to me. She only finally said, “I don’t know” in response to my asking her a question she knew the answer to. I brought the IPAD, IPOD, white board and markers, a crossword puzzle book, and the “Getting Better” Social Story that Claudia made for mom. But….mom is so sleepy which is how she gets when on antibiotics and with an infection…AND…she has the excess fluid on the brain.
The respiratory therapist (Doogy Howser’s little sibling) just lowered the vent CPAP setting again at 12:45. BUT…the therapist is back now to raise it up again (still CPAP mode though) because the neurosurgeon doesn’t want to work mom too hard before the surgery.
The Occupational Therapist came to assess mom and said that based on what mom would/ wouldn’t do, mom was at baseline. This meant that the OT would not work with mom while she is here in the hospital at this point. The OT asked about mom’s history and we told her. No cooperation from mom = no therapy. The therapist said that what we are doing with her is great and to continue. The therapist said to definitely continue our range of motion exercises with her.
I tried to talk to mom and to get her to talk to me but she was too tired. I read the “Getting Better” book to her but she didn’t read it aloud though her eyes scanned the lines. Mom just falls asleep and wakes in a daze and then back to sleep again. Much less coughing today. Dad came in the afternoon. I brought mom’s right hearing aid to be fixed…it is not working. She does have one that works though, thank goodness. Dad said that mom was in her awake/asleep mode this afternoon but that she talked to him (sometimes audibly). Among the times she talked to him, he asked her if something hurt her and mom said out loud, “No. I would tell you if it did.” Dad stayed with mom through the early evening/late afternoon.
“He is a shield for all who take refuge in Him.” 2 Samuel 22:31
No comments:
Post a Comment