Last night the kids and I went out to eat with our neighbor and my grandparents and had a great meal. I was stuffed! We went home and I had all good intentions of going to bed early as I needed to be up and out the door by 7am this morning to get my grandparents to the airport. But.........Danny has other ideas, heehee. As I was putting the kids to bed at quarter to 9 last night Danny finally decided to poop, YAY!! So as I was lifting his legs to change his diaper he let'r loose and pee'd all over himself. uck! First issue was he was peeing without a diaper.....Second he pee'd in his face so it was everywhere on him....and Third he decided to start to choke (so obviously it went down his nose or in his throat, YUCK!). So once the extreme crisis of choking was over with (god I hope this isn't an aspiration) I then stripped him, the bedding, gave him a bath, washed the wedge, and then used the blow dryer to dry it (thanks Bonnie), and made the bed again. Then I started to freak out as reality hit he had pee on his face.....is that ok?........do I need to do anything other than soap?.......Will it give him an infection (as it was in his eyes, nose, mouth, ears, hair.....yeap he did a VERY good job, way to go buddy!) I washed his face again before I put him to bed and brushed his teeth twice, LOL. Danny was so tired after all that he fell asleep in the shower and didn't wake up even when I was getting him ready for bed, (again) or when I was setting him up to his machines and he always wakes up when I put the Bipap on him if only for just a lil while. Boy what we'll do for a good time around here :) Avrianna was such a GREAT helper....she jumped out of her bed (they sleep in the same room here) and was grabbing a cover for him and helped me strip his bed, I am so proud of her! She is such a GREAT big sis to her brother.
Once things settled down and the kids were all tucked into bed Avrianna started to cry about the surgery. She is starting to freak out but is trying to hold herself together cuz she knows her brother is going to have surgery too. What a trooper! Looking back through all her episodes, crisis', and treatments she has been awake and aware of everything. She felt and remembers EVERYTHING, so trying to tell her she won't feel or remember this is not sinking in for her. I feel just awful, but know in the end (with no spleen and gall bladder) she WILL have a better quality of life. I see her fear, I hear her fear, and it's killing me. Not only for her but for Danny.....this is a real slap in the face when he can't say or do anything and after 13 surgeries I've never had this crying fear with him....he just goes with the flow and in this respect I wish he could be scared......Know what I mean? With seeing what a "typical" child goes through I can only imagine the resentment he feels after 13 surgeries. I feel awful!!!!!! Not to mention I feel differently with this surgery experience.......This is Avrianna's first surgery and I'M FREAKING OUT....now does that make any sense I've been through how many of these. I am scared to death! But once it's over then she is good to go and the recovery should be a walk in the park compared to some of her crisis' recoveries. Then with Danny I'm not afraid of the surgery so much (maybe cuz it seems so routine, I know that's terrible too) but with the recovery I'M SCARED TO DEATH! I don't want to hurt him or see him miserable for that long. The unknown of recovery time 6 weeks or 12 weeks and the unknown of will it be a brace (please pray it is as with his sensitive skin I know he will have SEVERE skin breakdown with the other alternative) or in a cast which will make his and my life alot more miserable. How do I carry my lil man without hurting him, How will he do with a brace/cast for that long, Will the ITB pump be ok as one of the incisions will be right on top of where his "puck" is and will it cause an internal infection? My head is spinning, I get knots in my throat, and I have a pit in my gutt. Yeap I'm a wreck about this. I can't wait till it's all over!!!!!!!!!!!!
I've decided this year NOT to have a birthday party for my lil man and I feel terrible. I've always had a BIG birthday bash for him but this year I think will be too much for him. He will be the BIG 5 on December 23rd and with his big day being less than 2 weeks after surgery I'm not sure he or I will be ready for a party. I'll definitely have a celebration for him but will lay low with just us. I'm actually considering NO Christmas either. Just sitting home opening our gifts of course but then no going from house to house just us by the fire place and sitting in our jammies! It will be different but I might like different!
Today Danny has PT at Kid Spirit and Danny was pooped out or uninterested as he slept through pretty much the whole Session. Ms Becky still stretched him out, heehee so no worries. I did do some smiling after on the ride home but didn't make it too far and was sleeping once again. So it wasn't you Ms Becky, LOL!!!! Now if I could only get him to sleep through the nights again. I miss sleep! I was spoiled as he would sleep from 10-7 now I'm lucky if I get him to sleep till 4, sigh.
Well Take care and have a SAFE and HAPPY THANKSGIVING!
**Please remember if you'd like to participate in Danny's Christmas scrapbook.....send me a picture of yourself/family and a message I can attached with it to Danny. Then I can read and show him how many people have been TOUCHED BY DANNY'S LIFE!
Every therapist has new tricks
12 hours ago