It all started November 18, 1996. I got a phone call at home from my half sister that my mom had fallen in the bathroom, and the paramedics were with her, and she would be alright. All I could say, is No, No, No. I rushed to my mothers house and got there before the ambulance left. They said they are not sure what happened but the way she had fallen, oxygen had been cut off for a few minutes and they were trying to get her stable. We got to the emergency room were the rest of my family met me. I was dreading telling my sister as she was 7 and half months pregnant with my moms first grandson. We talked to the ER doctors and they said she has had a severe trauma, and her lungs are filling up to fast that she would probably not make it. I called my sister. We all cried and were scared to death. Then the answers started coming in. She had a ruptured aneurysm of the anterior communicating artery in the frontal lobe. Subarachnoid hemorrhage. She had also aspirated vomit into her lungs. They could not operate until she was more stable.
Three days later she's still in Neuro ICU at Memorial Hospital in Hollywood, Florida. She had awaken from her deep coma, and could move everything neurologically. She even lipped, "I love you" to me, but due to the ventilator she couldn't talk. She also lipped her sisters nick name, "Boobsie". We were all so relieved she was neurologically all there; it even impressed the neurosurgeon. The next step was the brain surgery to put a clip on the aneurysm.
The doctor told us, on a scale from easy, intermediate, and difficult, mom's was intermediate. They told us it would take about 5 hours. So on November, 21, 1996, she went in for the surgery. We had power of prayer all over the United States, but were still scared to death. Her surgery ended up taking 13 hours, and the doctor told us it was very difficult, with lots of blood clots that had to be repaired, but there were no complications during surgery, and she had remained stable. He said, she was a miracle.
We thought, alright, she was neurologically there before operation, she should be there afterwards. Well, that's when we learned about vasospasms. Mom apparently had vasospasms, that had to be controlled by injection of medication into the blood vessels. She didn't wake up for another 13 days, and then would just open eyes and follow around the room. Nurses and Doctors said she has to start answering commands. She was only up for minutes at a time and had a coma score of eight.
After 3 weeks in ICU she was transferred to a nursing floor. We went from wonderful care, to budgeted care. We were scared to death, Mom broke out for a week with a rash that looked like it burned her whole body. Infection specialists and dermatologists, all said it was a drug rash and would heal itself. We didn't want to lose her over a rash after she had come so far. We brought in a faith healer, and the next night mom's rash had turned tan, and started to peel. But now she had bed sores. I see no reason, in a hospital, that should have happened. Seems every step forward, something else happens. She's had fever since day one until January 1, 1997, when they removed the catheter. Now with fever and rash subsiding, they can put in the ventricular shunt that has been needed for awhile.
On January 3rd, my mother went in for her shunt and my sister went into labor. The labor kept our minds off of the shunt, and Mom, we hoped and prayed. My sister had the baby at 2:00p.m. healthy boy, and my mother made it through operation. She smiles, and does simple commands, and withdraws to pain. She is still on a trachestomy but lungs doing very well. Her coma score is now a 11. She is awake a lot, but its killing us not knowing if she's okay. We are constantly on the nurses to keep her changed and they have even called in a wound specialist; she has stage 2 sores on her buttocks.
We feel so helpless. We've come so far, I don't
know what the road has in store for us, I just know its day 48, and we
still have her, and I don't want to lose her. I have twin
daughters, 3 years old, she was with everyday. Please if anyone has
any suggestions, or help please email me. Doctors say she can come
back to almost 100 percent over long period of time. Its so hard to
believe but after reading some narratives, I'm amazed. Thanks for
listening to my stories, and for any help I may receive. I will update
later on progress.
Lonely Daughter wants her Mom Home.
Update 4 Mar 97
Well its March 4 nearly 4 months later and my mother has still been going up and down with fevers which they now tend to feel is related neurologically. Sometimes getting to 104, and antibiotics still give rash so they have stopped that. The longest she has been without fever is five days and in those days she seems to progress a little. The doctors tell us that we have unrealistic expectations of her recovery and the best that we can hope for is a slight improvement. She still cannot move, only her head and right and left hands minimal with shaking. Sometimes she'll lip words and seem to really communicate with her eyes and other times were not so sure and she stares. They consider her as stage 3 on Rancho Amigos Scale which is basic brain function only. But one thing is consistent, we get a lot of smiles and kisses. I think the hardest part of this whole thing is not knowing the future. With the brain so many people get affected differently.
They told us my mother would be on a feeding tube and trache for the rest of her life. We as a family do not believe that and we keep praying. For all those out there, and the families, this is definitely the hardest emotional roller coaster you will ever ride. My mother will me moved to a nursing home tomorrow which is one of the best in Broward County, but a nursing home is still a nursing home. The sad thing is we can't even bring her home because they tell us that home care would exceed $14,000 a month; and that's with insurance. That is sad but a reality. Never in a million years do you feel you would have this situation especially with someone that was so healthy and young. The best advice I can offer any family is you have to hold onto the faith and one day I hope to update this narrative that my mother is walking out of the nursing home. Thanks for everyone's encouragement and support, if any comments or suggestions please feel free to email me.
Update 23 Dec 97
Can't believe its 13 and 1/2 months later and guess what, were bringing my mom home on Christmas Eve for the day. The first time she has seen home since the day she collapsed. I said we would defy all the odds. They just removed her trache last week and she is doing very well, shes conversational if you ask her questions, she seems to remember a lot of the past but short term memory is not that good. She can read and does have little movement in her arms. We have just ordered her a wheelchair so now she may come home periodically for visits.
We have never given up and even though its slow, we are getting there. Our next step is to try and get her to eat and drink. To know that I will be able to spend another Christmas with her is the best present I could have. To some people they don't think mom has much of a quality of life, but to us to see her smiley face and hold her everyday and to make her laugh everyday is quality. To know that seeing us lights up her life. We are persistent as a family and will continue to be and never give up.
My perspective on life has changed and now I really count the small blessings.
Update 30 Apr 2001
I would like to update the story I wrote a couple of years ago. I am saddened to advise that my mother "Judy Maxwell" has passed away on January 25, 2001. They advised that her body just shut down and they were not able to revive her. She was 60 years old. My husband went to visit her on her last day along with my sister and the only thing they noticed was that her stomach was distended and was advised she did not hold down her lunch. She had battled with a chewing disorder called pica they think that was directly related to the brain damage from the aneurysm. They had tried different medicines to stop the chewing of inedible items (the sheets, napkins, etc.) but nothing seemed to help. I personally think that this contributed to her death.
I am blessed though that I had the extra four years with my mother. I thank God for giving me the opportunity to have two wonderful mothers. The old Mom before the aneurysm and the new Mom after the aneurysm. We kept a daily journal next to her bedside for over 4 years, and I just sit back and read and amazed to see the progress throughout the years. All the happy and sad moments. To some , it may have been small, but to us, every step was a new hope and inspiration. She overcame many obstacles with such strength and patience. She was nicknamed the "Queen of Smiles." She was never aware of the condition she was in (a blessing in disguise), she would think she was at home, or in another place where she was in the past. Although, sometimes I would look into her eyes and I would wonder was she just putting up this front as she did not want me to be sad. In my heart, I feel God protected her.
I would like to thank you for setting up this site. Getting support from others who have been in the same situation had helped me tremendously. I met a lot of nice people and want to thank them for all their prayers and guidance. I hope that by posting my story and updates throughout the years can reach out to anyone who might need my help and guidance.
In closing, I would like to quote this poem from the Book called "Someone Cares" by Fleming H. Revell Company
When I must leave you
for a little while,
Please do not grieve
and shed wild tears
And hug your sorrows
to you through the years,
But start out bravely
with a gallant smile;
And for my sake
and in my name
Live on and do
all things the same,
Feed not your loneliness
on empty days,
But fill each waking hour
in useful ways,
Reach out your hand
in comfort and cheer
And I in turn will comfort you
and hold you near;
And never, never
be afraid to die,
For I am waiting for you in the sky!
Thank you Mom for 33 good years together and for all your love and guidance. I am comforted in knowing that you are with God now and with your Mother and Father.
In my heart always,
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