As I have stated so often, I LOVE questions! I live with this every day so I forget details that I want to always remember. So, here is more Q and A.
Q. How did your children do with the changes? Everything from not having you there, to looking different, to strength differences?
A. Aleq took it the hardest by far. He awoke that first morning to flashing lights outside his window and raced down the hall to see me being carried out by two strangers and daddy speeding off behind us. The boys were only 5 and 2 and the confusion the unknown must have been really tough. We have wonderful friends who stayed with all my kids until my in-laws arrived. They then saw them rush out of the house when that same friend delivered the message that I was being life flighted. In the following days they couldn't see me because kids are not allowed in the ICU. When they finally did see me, I was dressed different, looked different, just lay there, didn't talk, and there were wires, tubes, lights, and sounds that probably frightened them. They saw daddy only a few minutes every day, their brand new baby sister moved out, and (thankfully) Papa and Naya, Robert's parents, moved in to our house. They were so sweet and loved my kids like no one else could but they weren't mom and dad. There were times when Aleq would just break down and cry and even told my brother that he just wanted things back the way they were.
We tried to make the rare hospital visits less scary with wheelchair rides, treats, visits to the gift shop, and even trips to the therapy gym where they were spoiled rotten by the saintly therapists. When I got to my moms, visits happened almost daily but they mostly ignored me and played with the house full of toys and often visiting cousins.
When I was able to spend a whole weekend at home, it was as if it were Christmas the whole time. We didn't even do much of anything but the happiness they showed was incredible!
But they showed remarkable resilience.They seem to have very few negative effects. Quite the opposite. When Ana Jain came home, everybody had to adjust. She was totally confused. If you throw a rock from my mom's front door, you would probably be able to hit my sisters house so we were with Jain every day. Still, coming home was very hard for all involved.
I am convinced that all 3 of my kids were taken care of by our Heavenly Father. They all went through difficult times but they came through it with flying colors. They are more compassionate, appreciative of small things, responsible, and MY SWEET CRITTERS! That's not to say there isn't wildness or naughtiness in our home:)
As far as my looks and strength, Jain and Tommy never seemed to notice. Aleq did and at one point he and his friend, very seriously, decided that I look like Harvey Two Face. It's just not a big deal to them. I find that my reaction has a huge impact on how they view it all. We often laugh at things and our favorite word is strokey. "I cant open that because my hands are too strokey. " "I'm feeling strokey so I need to sit." " Mom, stop singing with that strokey voice." " Don't bug me, I'm strokey." This last one is my personal favorite and I often use it whether or not it has to do with my stroke. Robert and the kids just roll their eyes and shake their heads and often tell me to "come off it, Mama!"
Q. If you had a suction machine when you went home but didn't have the trach...did your mom suction through your mouth and nose?
A. I could not swallow, not even my own saliva, for many, many months. So I used the suction machine like a dentist would, to clear out my mouth.
Q. How was your peg tube different than a G-tube? How long did you have it?
A. Really no difference. A Peg tube is just the generic term for all feeding tubes. I had a G-tube for quite a while, until my stomach stopped working, then I got a JG-tube. Explanation. One more blessing was that my stomach started working again!!
About 9ish months after my stroke, I had worked long and hard on my swallow and I was finally told by my speech therapist that I could try small bits. My first treat? 1/2 of a McDonald's fry. It only took me about 1/2 hour for that huge meal. It took me almost another year to be able to swallow medication and be able to get enough calories orally. I kept the tube for months after tat just to be absolutely sure I didn't need it.
Once on one of my numerous trips to the ER, some doctors were talking right outside of my room. Sadly, I understood EVERY WORD! Gotta love the unsolicited education.