My new gynae said she believes all parents of autistic children deserve to get into heaven. No judgment day needed, an automatic in. I want that ticket into heaven. And I want to enter soon.
Guess who came to my room at 1:30 wanting grapes. These girls are definitely aging me even faster than my diseases are! I took multiple pain pills after a horrible hospital visit. I slept at 1:17am. Then she came in.😆
I think her mind is also racing fast. She was so worried about her baby, her twin, going into hospital yesterday that she asked them to pray for her when they all went to the playground yesterday.
It’s been a bad few months for the children in terms of their emotional state, and yesterday brought them to a new low. I recorded a video I didn’t get to edit nor post, about how we definitely need to look beyond the behaviour and ask for the underlying reason.
Our Hapoy Family/Adoption Day celebration fell flat. It started in the morning with Amarissa who suddenly became obstinate, oppositional, defiant and grouchy while I was tightening her locs. I ended up telling her to get up from the breakfast table and go to her room. For the first time ever, she said no. Of course I didn’t listen to that no and still got her to get up. She started wanting to go back to the table when she saw her Adoption Day cake being carried to the table by her big sister but I told her the cake would be there when she’s done thinking about her behaviour.
She was grouchy and angry but I told her to just sit in her room and think. I prayed for patience and the right way to approach her.
I gave her a few minutes then went to talk to her. I asked her why she was being so mean to the others and spoiling their day. She claimed she wasn’t spoiling anyone’s day. I told her her mood was spilling over onto her little siblings, including the Talkative Twin who’d greeted her with a bright, “Good morning! It’s your special day!” I asked what was wrong.
Then she burst into tears. She was sad about her little sister and her upcoming admission. Hospital made the suffering more real and she couldn’t handle the emotions. I told her that being sad is perfectly ok. It’s just that her anger and snide comments were rude and angry and so it messed the meal up but if she were to show real sadness in a normal way, it would be better- She is allowed to cry.
She said she would be sad appropriately , and received a big hug from me.
After that, she went off to enjoy her cake.
Hospital admission was hell. But hey, at least I heard my daughter yell, “Mommy!” There was no parking so I had to drop her off with her big sister at admission and go down to the shopping centre nearby for parking. I got back to the hospital and though I couldn’t see her, I could hear her. Everyone could. It was so sad. She was crying and yelling and shouted “Mommy” a few times from the floor above admissions.
Eventually, we got into her room in PICU. But the torture didn’t end there. For hours of suffering, she wouldn’t go to sleep. The sedative she was given had no impact on her at all. She was given a top up. Still no impact. She was drowsy but very alert and wanting to escape the room. After more hours of trying to keep her under control, the doctor suggested her usual sleep pills. What!? How would that help if actual sedation wasn’t? Nevertheless, I ran down to the store taking our big girl with me- I’d recruited her to control her sister while I do the Admissions process. Went to find yoghurt and gave her the sleep aids the way we give her at home.
As expected, that did not result in any giving up. She was still getting off the bed and wanting to get out the room. The nurses could see her (PICU) through the glass door in her little room.
It was hard, wrestling with her. Watching her roll around the bed and throwing herself this way and that way. Trying to stop her from falling…
Even a drive didn’t help. As soon as she got out the car, she was wide awake.
Finally, they injected her with ketamine.
She fought the IV so they had to fashion bandage mittens for her. By this time, I was back home hoping to rest my painful body but that was not to be. As soon as I entered, her twin wanted me to teach her. Have you ever had a worry and been unable to think? I have. And I had that yesterday too. I couldn’t focus. My mind was on her confused sister and I didn’t even eat a meal till supper and couldn’t even finish the supper I had. Teaching when my body is crying to lie down was not part of my plan. But I needed to keep them as regulated as I could, so I taught.
Meanwhile, Amarissa was having a breakdown over her little sister. They were meant to eat pizza yesterday as part of the celebration but she cried and cried in my arms because her little sister wasn’t home and she loves pizza.🥹
They prayed twice for her.
I told them they could have a Nandos veggie wrap instead because their sister doesn’t eat Nandos stuff and we’d have the pizza when her sister is back home.
That change of plan dysregulated her sister. Oh my! Handling multiple big emotions on one day is hard.
But eventually they slept after Amarissa kept saying she missed her little sister.
Sleep was needed. I was painfree and able to sleep.
Until now…
Talkative Twin is walking around going to the toilet multiple times out of boredom. I gave her more sleep pills and I’m hoping she won’t be able to fight them like her twin can. I mean, even at home, after five of those, our non speaker doesn’t sleep through the night. What did he think six of them would help!?
Now he knows what I mean when I ask for extra medication for my children. The nurses were extremely shocked she didn’t sleep. They said she’s like a bull. As I walked up and down the hospital corridors fetching her soothing blanket, her Paed receptionist walked down the corridor and told me the doctor had told her our girl just isn’t sleeping. She’s a very unique.🫣
She had an x-ray. She has a very bad case of fecal loading. I was vindicated. I had been saying that even the con cleanse prescription med didn’t empty her and her father was arguing with me that she did ‘go’ enough. I told him I’ve done these meds for colonoscopies. I know what eventually comes out when it has worked. On adult dose twice a day for six days, I knew it still wasn’t enough. After all, she had been passing stool before the fecal loading began. But it was not enough.
They did a nasogastric tube down her nose and then throat into her belly and also a more specialized enema after seeing how bad the impaction is.
Now we wait and see. Wish us well. I’m meant to be at the hospital at 6:30am. I hope I can get back to sleep. Pain is screaming in my hip and I’m wide awake mostly because I am wide awake, haha, but also because I’m listening out for her twin sister who can’t sleep.
Surgeon is on standby.
What a horrible celebration day for my poor angel. Too many tears were shed yesterday from both the little girls.
They said I should write a book 