Hi Everyone!
I didn't expect to update so soon, but things are happening fast now.
Last Monday I contacted Katha's specialist. I told them how little she is eating and drinking. They recommended that I take her back to ER with a letter from them explaining the situation. I informed them that we would like Katha to pass at home. So, they sent an urgent referral for a palliative team to come to our home. They were also worried that Katha wouldn't make it through the night.
I had some friends come over that night and while we were talking Katha tried to get out of bed and walk. She took a pretty nasty spill but didn't react at all. There was no crying or yelling, she just sat there and waited for us to pick her up. That was the first time I believed she wasn't in pain at all.
On Tuesday the palliative team came in. They gave us a bunch of information but couldn't do much for us. The most important thing they did was make it legal for Katha to pass at home and for us to be able to contact a funeral home rather than EMS when she does pass.
On Wednesday we found a funeral home that we liked and contacted them and they are on call for when Katha passes. We also called a priest to do her last rites. Katha was sitting at the table when the priest came in with food sitting in front of her. So, when we started we took all the food and the drink away as well as taking off her bib. When we bowed our heads to pray she pulled a piece of bacon out! I spent the rest of this time that should have been very sad trying not to burst out laughing. It was just so Katha. However, she started gagging at just the thought of eating. She would put food up to her lips and gag without ever putting anything in her mouth.
The aide Katha had for years in school also came on Wednesday for a visit. As soon as she went into Katha's room, Katha's eyes lit up and she immediately put her arms out for a hug! Katha giving an uninitiated hug is unheard of, I cried.
On Thursday Katha tried to walk again so we had to put the rail back on her bed to make sure she stays in it!
On Friday we had some sippy cups that Katha can use in her bed delivered so she can just constantly suck on the sippy cup because she hadn't drank in a couple days. We also decided to stop giving her insulin at all.
Saturday I was pretty scared would be her last day because she hadn't drank anything and her blood sugar was getting really low. It occurred to me that if she has a low, there is no way for us to get any sugar into her. Jay also had his first high school volleyball tournament and I wanted to be there for her.
Saturday morning her blood sugar was at 10 (normal is between 4 and 8) and I could watch her on video so I decided to go to the tournament and she was fine all day. In fact, she drank two glasses of water (which totaled about 8 oz. of water)! I still called her doctor for advice on whether or not we should give her medicine if her sugar gets low. He advised that we should simply because watching her having seizures would be harder on us than it needs to be.
We tried giving her chocolate milk in her sippy cup just to help keep her blood sugars up and she refused to drink it.
Last night her glucose alarm went off at 5 in the morning and I jumped out of bed to see what was wrong. She was having a high and was at 15! Then, when I woke up at 8:30, I went to check on her and she was at 22.
What I have learned over the past week is that Katha survivors instinct is strong. We have to watch her like a hawk. I have had to tell her to get back into bed several times. She smiles at me when she does something that she would get in trouble for normally.
I have decided to write down some of her progress in the same manner I wrote her symptoms. This part may be a lot harder to read so please feel free to stop reading here.
Weight: Katha has lost about 100 pounds now. Her bones protrude and the port that we use to have to search for now sticks out and you can see the entire thing.
Lips: Katha's lips are so dry they are bleeding. My friend gave us some ideas how to keep them moisturized so that she can be more comfortable
Skin: Katha bruises so easily. I'm scared when changing her because the slightest touch causes bruising. She also get sores really easily. The skin on her feet was peeling off but the nurse told me to put some vaseline and socks and her feet and that cleared it right up. Her pressure ulcer had healed really well.
Eyes: Her eyes are blood shot and dry. She keeps having goop come out of them. They have also sunken in quite a bit.
Breathing: Katha's breathing is very shallow. I often have a hard time telling if she is still breathing
Comprehension: Katha is with it. She still understands what is happening around her even if she can't communicate at all. She still tries to help me while I change her.
Fingernails: Her nail beds are just a little bit blue.
I can't think of anything else for now but will add more next time if I do.
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