We came into the New Year with quite a bang. Christmas was pretty mellow, we had a small group of friends over for Xmas Eve dinner and then on Christmas Day me mom dad and the dogs just chilled out together. We didnt have any family visiting us this year. My granny and paw paw normally would have been here but Paw Paw had quardruple by-pass surgery on the 7th of December. His surgery was a success and he is home now recuperating. I had a surgery coming up as well.
On January 4th, I had my VNS device replaced. The previous VNS battery was dying and not doing its job in helping me manage my seizures. It is a miracle that this happened.. Not sure if you remember or not, but my parents fought very hard to get me the VNS device. We had been turned down by the Children’s hospital here back in 2019 as I did not qualify in being capable enough to receive. My mom was not okay with that answer and she did everything possible to find the device and actually got the company who fabricates the device to donate to us as well as the hospital and doctors service. We had all wondered what would we do in 5 years ( the length of the device) but what we try to do every day is just take one day at a time.
On January 2 we travelled to San Jose and got settled in at the hotel. Mom called Dr.Villegas and he said we needed to be at San Juan De Dios, a public hospital in San Jose at 1pm. I was packed for two nights. One night for blood work and tests and the following morning surgery and then another night to monitor me. We were all a bit anxious. It was the first time to be in the ADULT hospital. I no longer was allowed to be seen at the Children’s Hospital anymore when I turned 13. I feel like I am kid, not sure why I have to be in the hospital with the adults. But… it is what it is and we were grateful to have an replacement VNS and that my doctor pulled strings to make it happen for me.
When we arrived Mom had to go to admissions, dad had parked the van an adventure as always) and was getting our our luggage. They sent me and mom to the wadrobe line where we were to get my gown. The nice man handed us a gown the size to fit a small elephant. Mom said that will not fit my girl and asked for a smaller size but there were none. So we opted not to change my clothes and wait with the other patients to be admitted. Dad came and met us and we waited and waited. Meanwhile, I had had a seizure a strong one but not a long one and also had gone to the bathroom. Mom asked where I could be changed the only option was the bathroom floor so we opted out on that choice too. Mom asked the nice gown man if we could use the changing room as there was a tiny bench that mom and dad could fanagle changing me on. They did a great job changing me in that small little room on that tiny little bench. While still waiting…….I had another seizure, and my parents were getting ansy as it was day 5 for me which means I am more than likely going to have to be injected to get a seizure to stop. Mom goes back to admissions and asks what is taking so long. My doctor had told us that everything was ready paper work in order and my bed was number 17. Admissions told her soon. An hour has passed and I had another seizure, mom went back to admissions this time getting one of the workers attention that we needed to be taken up NOW. Ten minutes later the patient assistant came down to get us.
Just as we were rolling into the Neurology ward and was talking to the doctor at the Nurses desk I had another seizure. This one was a doozy. Mom looked at the doctor and said please take us to her bed we are going to have to inject. So we went quickly, while I am seizing, in the salon that I would be sleeping in for the night. My parents always have an emergency supply of Valium in my medical bag in case this happens when out of my home. Once in the salon there was no curtain or screen and my neighbor in the ward was a 75 year old man and there was another older patient visiting him when we came rushing in the door. Mom tells the patient assistant that she needs privacy for me and asked for a screen to be brought over. Thankfully there was one. Nurses came up, the doctor, and mom just calmly said we have it under control. Once I was given the injection of Valium my seizres slowed down but continued for 45 minutes. The doctor came by to check on me and said that if I had a seizure like that in the morning the would not be able to operate. We assured him that would not be the case, God willing.
Once we were settled in and my seizure stopped dad stayed around until dark then it was time for him to go to the hotel and check on my puppy Starberri. Only one parent was allowed to be with me overnight. It was hard for dad to say goodnight and for me to see him go, but he promised to be there first thing in the morning to hold my hand before surgery. I was glad he was going to check on Star, as she is new to our family and I was sure she was scared too, all alone in the hotel. Just as I was dozing off to sleep the lab tech came in to draw my blood. Mom expessed I was a tough one to draw blood from, the young woman assured it would be okay. Well…. the first poke didnt work nor the second but the third one did. The tech had hit the vein but the blood was coming out slowly, she asked my mom to hold the vial while she kept pushing the vein for more… Mom was on her knees holding the vial and praying it would be enough. The the blood stopped coming and the tech said she “thought” she had enough blood for the exams required before surgery. Turns out she did not have a sufficient amount, and just before 10pm three people came in from lab. No one really wanted the job of trying to draw my blood. Two of the nurses had said no,, so one young man that was in the group said he would do it. While everyone was holding their breath, the young tech slipped the needle into my arm and hit the jackpot! Within seconds the vail was full and a sigh of relief was heard by all. Now hopefully me and mom can get some sleep. They had a pretty decent recline chair for mom next to my bed. My neighbor was asleep and the man visiting him had gone back to his bed in the other salon. The floor I was on was for people who had strokes and other neurological problems. There must have 30 of us in the ward. It was mixed women and men. Thankfully there was just me and my neighbor in our salon, he seemed to be a very nice man.
At around 2am mom was checking on me and see if I needed to be changed. Normally I do in the middle of the night. At that time all the light were off in our room. At the moment mom was changing me she had the sensation that someone was staring, she turned around and there was this man across the hallway looking in our room through the glass window. Needless to say mom was a little freaked out and stopped what she was doing and went straight to the nurses startion to tell them what was going on. They came and told the man he had to go to his bed and to behave himself. He went away and mom went back to changing me but then not a minute later there he was again. This time mom got very irritated and went back to the nurses station to tell them that it was unacceptable that some old man was staring while my mom was changing me. They came back again and told us they would take care of it. The next thing we knew, mom looked into the other salon and they were tying him down to his bed. Mom was a bit freaked about that and hope he didnt get loose and want revenge for having him tied up. Needless to say my mom did not sleep a wink that night. Matter of fact I heard on the phone mom talking with George telling him about all the craziness we had experienced that day. There were a few more interruptions through the night one woman screamed over and over again for help at the top of her lungs, at dawn the movement of the hospital awakening had all kinds of noises. I was just glad the night was over and we could move on with my surgery.
Surgery was scheduled for 8am but I did not get to go into surgery until almost noon. Dad had arrived bright and early to be with me but we had to wait. We never knew why we had to wait so long but we did. When it was time for me to go into the operating room we had to say goodbye at the doors mom and dad kissed me and wished me good luck. It is quite different being at the public hospital than the private. First of all everyone knows me at CIMA. Here no one knew who I am, and my parents would have typically been able to be with me up until they rolled me away to the surgery table. The surgery was supposed to take 45 mintues. It went 1.5 hour and mom and dad were getting a little anxious. Finally I came out the doors and off recuperation mom and dad got to see me roll by but they were not allowed to go into the recovery room. So many rules here at the public hospital. Of course they were both dying to see me. Finally an hour later I got back to the salon. I had to stay one more night before they would let me go, this time dad stayed with me and amazingly we had a peaceful night.
Overall, the experience was not so bad, we actually got better treatment than some. My neurologist was very kind to me and so were the nurses and staff on the floor. We were so happy to get out! Now it is rest and recuperation !
