I have battled myself internally trying to decide if it's the right thing to do. You see it's completely an elective surgery. She didn't HAVE to have it, but there's a very large possibility that she's going to need it the more into the radiation treatment she gets because the area is in her neck and jaw which will eventually make it hard to swallow, she will get burns and have some other complications as well so it's very likely she will need it but at the very least aside from being a precaution it's for her to receive medicine as well because she always pukes it back up if given to her orally. So I guess that's a plus.
However my apprehension wasn't put at ease when Arley woke up and cried and cried with tears streaming down her face telling me how much pain she was in. It took hours for her to settle down. She only slept for about an hour before she was back to being upset again.
Once transferred from recovery to the pediatric unit it was discovered that she had not peed in about six hours and was becoming dehydrated. They had to give her an extra bag of fluid and do a scan of her bladder to see if she was retaining any pee and she only showed 95cc's which was about 4oz.
Thankfully though the extra fluid helped and she almost finished an entire juice box. She never napped again but finally just crashed about an hour ago at 9:30. Poor kid.
She's still in pain, but they are quick to give her meds to help ease her and be comfortable which is fantastic because it's really hard to keep her calm when it wears off.
They only thing helping right now is bubbles and lots of them. She loves to try to blow the bubbles and is only mildly successful. I need to invest in a bubble blower machine or something she just can't get enough.
Also she is getting into books a lot more. My sister purchased one for her that's about butterflies (my favorite) and she loves it. They also make a ladybug one that's similar that I will have to try and buy for her at some point too because I think she would get a kick out of it as well.
This day has been such an emotional roller coaster for the both of us. It's so hard seeing her in pain and I would do anything to take it away if I could, but damn she is such a trooper. Everyone here loves her and it's hard not to. I don't say that because I'm her mama, but because she is just so full of life and happy and smiling despite everything she's going through.
Sometimes that makes it harder on me when she has to go to sleep for a procedure. She's so happy smiling laughing enjoying herself and then bam out like a light. I almost wish she was the crying type because I think that would be easier on me, but who the hell knows.
This shit isn't easy, I wouldn't wish this on anyone. Nobody wants to see their child go through this day in and day out . It's awful I'm not going to lie and sugar coat it believe me it's not in my nature. Battling myself constantly to make the right decisions for her keeps me up at night.
I had a good 2am cry session the other night just thinking about all of this. It was mainly triggered by the fact that someone messaged a family friend who posts all the time support for Arley some negative things about it and I just lost it. Who the fuck in their right mind would have anything negative to say about a bald blue eyed beauty who is in the fight of her life? Are people really that heartless and down on themselves that they have to resort to low life behavior?
They don't have balls enough to say it to my face which is fine. If they knew me they would know I wouldn't tolerate it and would go up one side of them and down the other before they knew what was happening. Anyway that's neither here nor there. Arley has a large team of people rallying around her constantly. She's touched so many lives already and together we will work hard to beat this.
I'm hoping that by next week she starts to feel a lot better because we have a lot of special events planned that are going to be fantastic. One of which is a star studded celebrity event!
Anyways Arley is sleeping as I mentioned before so I'm going to take this time to relax and catch up on my new show. Until next time friends.....
PS- Arley got a stuffed pig before her surgery that we named Petunia and she had an operation as well. G-Tube just like Arley. How cute is this?
I am so sad that Arley has to go through pain, and even with that, I do believe that you are making a right decision for her (in a longer run, especially when swallowing gets more difficult). Arley is an inspiring, beautiful little girl with a fighting spirit. You really can see that in her pictures. It amazes me how she continues to have a smile on her face in the face of hardships. As for stupid, little mean people; they claim they know the best, and choose to be ugly about it, which is sad, because it is their loss. They don't understand what it is like to be in your shoes, nor to be in Arley's shoes. Basically, hum-bug to them!! Arley, and you have a HUGE HUGE HUGE crowd with you, cheering, and loving on you all. I believe that FAR outweighs mean people out there. :) XX
ReplyDeletePS: Love the pig!!! Stuff like that always makes me smile (I remember when I was a small girl, I received a stuffed animal with a hearing aid, and that made me really excited--so I imagine that it did make Arley happy!!)
Hi Ashley,
ReplyDeleteSorry I have missed your comment. My phone never told me that someone had responded. It was a very difficult transition getting used to the G-Tube. Arley hated it and wanted it out of her immediately, but has thankfully got used to it as the weeks have passed.
She doesn't touch it or play with it which is fantastic as I have been told a lot of kids do. That is so wonderful to hear that they have done the stuffed animal thing for kids for generations and that it's not something new. Arley adores her pig, but more so from afar as she doesn't like that her piggy has a tube and constantly asks for me to take it out. Oh well. It's definitely a wonderful thing that hospitals do that for kids to help ease them into the transition.