On Saturday we spent the entire day at the Children’s Hospital ER because Little Critter had a tiny silver metal speck in her left eye. The speck wasn’t causing much drama, but her eye was irritated and watering… being four, she of course rubbed it constantly which caused redness/swelling around the eye. We went to the Pediatricians office in the AM, they took a look and said, “See ya… go the the Children’s Hospital ER so an Opthamologist can get that out.” So, we did.
Eight hours later we were back home. They had to sedate the little munchkin so the eye doc could use a tiny syringe to lift the speck from her cornea. She got pretty sick from the sedation and we had vomit everywhere… so she came home in a tiny hospital gown with animals all over it and Mama’s sweatshirt.
By the next morning you’d never know she had any drama. That’s my little trooper. The ER nurses didn’t even bruise her with the IV.
Sunday after church, we made the one hour drive south to visit my Mama. Her health is declining rapidly, she has had the Trach for nine months now and is vented full time. It has been 2 years 6 months since her diagnosis of ALS and if it wasn’t for medical science, she would have passed away. She is choosing to continue to fight, but she has lost all function except a slight head shake for “No” and blinking for “Yes”. Communication is a real challenge, but I get so angry when people talk to her in baby voices (like my brother and her husband do) or don’t talk to her at all (like nurses usually do). She is fully cognitive and in charge of her medical choices. Anyway, on Sunday she didn’t look well… Monday AM I got a call that she was on the way back to the hospital via ambulance for another round of pneumonia. Her body is getting weaker by the day and she is in a lot of pain. At this point, it is looking likely that her disease may end the fight for her, even though she isn’t ready to give up… TeenGirl and I have been driving down daily to spend time with her. We fear that she will lose consciousness and then it will be up to me to sign the stop order. We are hoping that if the prognosis gets worse (ie, she goes into Renal Failure) that she will make the decision at that point to turn the vent off and go on comfort care. It is very important to her and to us that she is in charge of when the end comes, as that is all she has control over now. If you are the praying kind, please pray for Mama Cheryl, that she finds comfort and peace, that God’s will be done, whether that means she stays with us longer or he takes her home. Pray for the relief of the pain she is experiencing… Pray for those of us who love her and are watching ALS eat her life away.
The good news here: My family is a MESS. I won’t go into that now, but my mother has not had all FIVE of her children (age 16-33) in the same room in more years than I can count. The last photo I saw that had all of us together was when I took everyone down for professional photos in the early days of my marriage, pre-children, so it’s been at least 10 years. There are many reasons for this and at some point I just may launch into some of that drama… it’s like a novel you just can’t put down even though you are shocked and maybe even disgusted.
So, if these are Mama’s last day, she has had all her children in the same room with her for most of them. For that, I am Thankful even though I wouldn’t normally choose to be around a couple of my siblings. My Mom needs her children… good or bad, we are her legacy and she loves each of us.
With that, I sign off… gotta check the roads as it decided to snow overnight. I need to head down to see Mama and can’t until I know the roads are safe. I’m a bad weather driving wimp. 🙂