Reader’s Digest Version of Today: No surgery yet. Lost bed at facility and most likely the facility too. Mom’s Medicaid was declined but we are fighting it.
Today is one year ago that everything happened to mom. A year ago today, mom and dad picked up Aunt Sophie on their way home from upstate with us for Memorial Day weekend. When they arrived home, mom called Aunt Carol and cooked some dinner. Then she, dad and Aunt Sophie sat at the dining room table to eat when mom suddenly had an excruciating headache. She cried out and asked dad to get some Tylenol as she grabbed her head in her hands and then she fell to the side where Aunt Sophie caught her. Dad and Aunt Sophie guided her to the floor and dad called 911. An aneurysm had burst in mom’s head…in the frontal lobe of the brain. A coil procedure was done the next day and the day after that mom had a small stroke. And our family journey was set in motion.
I began the day with mom this morning. I left my house out east at 7:10 a.m. so that I could get to the hospital by 9:00 a.m. given the rush hour traffic and the fog! The weather metaphor reminds me of our walk this last year...“proceed ahead with faith in the right direction even though the road there is difficult to see.” Anyway, I made it to the hospital and up to mom’s room/cubicle with 12 minutes to spare! Her eyes were closed and she was grimacing. She had the white, thick goo in her hair still from the EEG they did on her last night. As of yet, we don’t have the results of the EEG. I opened mom’s eyelids and she looked at me. I talked to her and she turned to me. She didn’t seem too alert though…she seemed to be more in her “sleepy” state even though her eyes were wide open. She didn’t speak or mouth anything either. I told the nurse I was here and the nurse went to tell the PA and physician I was here. The nurse said no one knew who would be speaking to me but they all knew I was there. I checked mom’s hearing aids—left ear great with great volume/right ear very low volume. Then, I prayed with mom; I had “church” in the car on the drive to the hospital—praying and singing most of the way. Mom put a serious look on her face and closed her eyes as I prayed. She also lifted her head up to my outstretched hand on her forehead as I prayed. It was as though she was craving the touch/energy of the prayers and absorbing them. As I finished praying with her, I was told to go back to the waiting room outside the NSICU and down the hall. As it turned out, I sat down the hall reading and waiting (I asked who was to speak to me but was told to wait) for 2 hours…with no word from anyone. Busy place I suppose. At the regular visiting time, 11 a.m., I went to see mom…in the hope of receiving some news.
When I went into mom’s room, her eyes were closed and she was grimacing. I opened her eyelids and asked how she was. She said that she needed to be suctioned. I called someone to suction her, and sure enough, she needed it. Then, mom mouthed, “I need to be stretched and comforted.” She was constantly grabbing at her trach. The whole time. I had to hold onto her right hand continually. Dad came in shortly after 11:20. He told me he was declined for Medicaid. The saga never ends. Mom just keeps asking for comfort. The social worker at the hospital (the same person as last year) told us that, if mom gets the shunt today, she will be released by Friday. The social worker also said that, after speaking to the Admissions person at the facility mom has been at, they will hold the bed only until tomorrow, Thursday, and then mom will need to go to another facility if no bed is available there. I plan to make phone calls as soon as dad and I speak to the team here at the hospital. Mom tells us now, “I need to be touched.” A nurse, very kind, came in to give mom her blood pressure medication and also an “antibiotic” ---she didn’t know what mom was getting it for, just that it was ordered and began yesterday at 5 p.m. The social worker just told dad and I that the physical therapists came to assess mom this morning and will be back to reassess after the shunt is in. We were told to pick our top 5 places to put mom from the list of vent facilities in case the old facility has no beds. Dad and I asked about weaning mom from the vent and we were told to speak to the respiratory people. We told the social worker not to worry about the bed hold---mom’s health and best interests are to come first. So no rushing things and jeopardizing her health over a bed hold. Mom is not really with it today…she has her eyes closed a lot and is not talking much. She isn’t answering our questions much either. She isn’t saying, ‘I love you’ as she usually does and isn’t giving kisses either. She looked confused when I kissed her and asked for a kiss back. I put on some music for mom to listen to and she calmed down a bit when I did.
We spoke to the attending physician or resident, not sure which, but this person is part of the team assessing mom. The attending person said that mom’s trach cuff was too loose and tightened it. Dad and I wondered if mom was trying to tell us it was loose because she frequently grabbed at her neck before that. We were told that it is unlikely that her surgery would be done today. It appears that it will be done tomorrow. The attendant told us that in the past year, today is the busiest day yet for surgeries and back-ups! We asked about getting mom off the vent and were told that it is a possibility. As far as reintroducing solid food, we were told to wait a few weeks---it was the attendant’s opinion that food by mouth presented too soon could cause severe pneumonia. So a ‘better safe than sorry’ outlook is best regarding food. We were also told that mom checked positive for a UTI (urinary tract infection) and that is why she is on antibiotics. The procedure is not a lengthy one time-wise and is one that requires a very short hospital stay. It appears that mom would be in the hospital perhaps a day after the shunt goes in…maybe 2 days and then out of the hospital. The attendant also put mom on the CPAP vent mode because she is breathing so well (she just has a lot of phlegm --- which they said is too watery from too much Robisol). The attendant had to keep lowering the vent settings because mom breathed so well. The attendant also said it sounded like mom’s trach cuff was too loose so it was inflated and the comment the attendant made was that the cuff was so loose it didn’t even seem to be inflated. The attendant said that mom would be getting a permanent internal shunt. Mom was put on a catheter today in the afternoon and her nurse said mom let out 275 ml of urine which is a lot.
I just talked to the Medicaid person and she said that dad did a great job collecting items needed but mom was declined for Medicaid based on items they said are missing but are not missing!! She has been fighting with them all day. Dad has to locate 3 tax bills and write them a letter (Con is doing that for dad). Then dad has to deliver it all to the Medicaid lady in Oceanside. Then dad has to return his Jeep because the lease is up. Then he goes to the hospital to see mom.
Also…just in case isn’t eventful enough…we lost mom’s room and perhaps the facility, We are leaving it in God’s Hands. The facility mom was in is the only one who does aggressive vent weaning but God is in control. John and I and Lenny will go to pack mom’s room up tonight before midnight.
Right before dad left for the day, Donna came to stay with mom and I which was such a blessing! Donna is our cousin who lived next door to us for years and was like a 4th daughter to mom.
Mom was put back on the vent mode at around 6:00 p.m. because she was “getting tired.” Once on that mode, she didn’t cough as much. The therapist said that he couldn’t believe the facility uses vents that have SMIV modes…”very outdated technology.”
Donna and I tucked mom in for the night at 6:35 p.m. and prayed with and over her.
I left to go to the facility to pack up mom’s room with John. I arrived at 7:35 p.m. and found John and Samantha---my Sammy girl---packing the room (mostly done) and the van. It was a hard thing to do. Another ending in my life perhaps…maybe not, but for today it was an ending. Many of the staff were upset to see us packing up and taking mom’s things. All asked about mom and sent love and prayers and well wishes. Some kisses and hugs good-bye for now. We could be back there in 2 days…who knows? Everyone spoke of the love and inspiration and hope that our family was and is to them. Many spoke of mom and her room and the sayings and scripture verses on her walls as a place to come and be hopeful and comforted and inspired. You don’t know how the life you live and your walk touch others. You just don’t know.
“As for God, His way is perfect..." 2 Samuel 22:31
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