My sweet girls is sleeping right now. Sleeping soundly after a restless night of a few seizure clusters here and there. They agitate her, scare her and make life pretty unpleasant sometimes. I had a family member ask me what made this “decline” so different from all the others she has rallied back from.
It’s really hard to put it into words but I will do my best.
We have always been able to stop the seizures, rest for a day or two and then move forward. That is no longer happening for her. First off we can’t stop all her seizures anymore no matter how many meds we give her. We have done the Ketogenic dDiet for three years before her gallbladder couldn’t take the high fat anymore. I use Frankincense oil on her spine every night to help her. Her diet is as whole as we can make it given her needs. We have done experimental treatments and homeopathic treatments. Other than the medicinal marijuana, we have done it all. You have to remember we have been caring for Miss Courtney for twenty-two years and she has seized every day since she was five weeks old. Many of the treatments available now, we were in at the ground floor to see of they would work for our girl.
Anyway, now that we can’t stop them each time, she goes through cycles now where all I can do is hold her and love on her as the seizures come and go. This puts pressure on her heart, lungs and kidneys. She struggles for breath at times. I never know when this will happen throughout the day or night. I just always have to be prepared for it.
My middle name is crisis management. Please don’t feel sorry for us. It’s really OK. I mean the seizures are never OK, but the fact that we have to deal with them is. We have had twenty-two years of practice, so it’s a typical occurrence around here.
What else is different this time ’round? Her weight is only 88 pounds. She has a distended tummy, fights constipation everyday, has scarred lungs from past pneumonia’s, is showing higher ammonia numbers with her liver and her kidneys are stressed out to the max. Her poor little body has carried a very heavy load for a long time and she is tired.
Hell, we are all tired.
Tomorrow we meet with her family practice Doc and we will figure a few things out. She may enter traditional hospice here at home or we may wait a few months to see what happens before we pull that card. We have new rescue meds here at home for her seizures, which means we can monitor her here at home instead of the ER. As of yesterday, we have a new g-tube diet plan in place. She is fed every two hours like a baby. That alone is a change and we will need time to adjust to.
The seizures come at will no matter where we are or what we are doing. So we need to always have an exit strategy if we do go somewhere as a family. Since the weather isn’t too bad, it’s our hope to still bring her to Mass with us when she is healthy. Her surgery site look wonderful from last weeks surgery, so we may even try to bring her this weekend. We shall see.
One thing that has not changed is my Courtney’s ability to give witness to the dignity of the human person, no matter their abilities.We have our second group of med students coming this afternoon from USHUS (The Military Med school at Walter Reed Hosp in MD). They will meet with us for an hour or two and discuss Courtney’s medical history, ask why we chose to do what we have done and much more. No question is out of bounds. No topic out of reach.
In the past we have discussed everything from religion to end of life issues, to marriage, parenting, emotional health, finances, and so on. It’s a wonderful opportunity for these first year med students to really see a family who is in medical crisis and what their life looks like outside the examining room.
We always laugh and sometimes their are tears, usually from the big burly men who want to be trauma surgeons. But with every meeting, Miss Courtney does her thing. Sometimes she even seizes while they are here, which is a real eye opener for these young officers.
My daughter is doing what God chose her to do. She is a suffering servant of the Lord. She shines with HIS love and mercy. She truly does. These young men and women leave here with a memory to take with them as they learn how to treat and care for the individual with dignity and grace. It is an honor for us to participate in this program.
Yes, things are very difficult right now. No, I don’t see that changing. Yes, we will be discussing ALL options tomorrow. No, we have not made any final decisions on anything from her care plan to her funeral. Once we know what the Docs are thinking then we will move forward. So please keep praying for our girl and us. SO many decisions to make.
If you could also keep my hubby in your prayers. Jerry has a big interview tomorrow (Thursday) at 10:30 a.m. He is fighting hard to find a new position before the layoff Sept. 19. St Joseph has a lot to do here.
As for me and my girl, we will soldier on, relying on the Lord to provide the strength and wisdom needed to get through this, no matter what. He breathed life into Courtney. Only He will decide when it’s time to bring her home.