We got another great update from Kya’s Mom Tracy. She is now out of ICU! We are thanking God this morning for His strength in her little body.
Thank you all again for your prayers. God hears our voices joined in unison for Kya & her family.
Tracy is exhausted, so please continue to pray God will help her to stand, unmoveable, in Him. Also, Kya needs continued prayer to have peace in her little heart. When she throws fits, it puts her in danger & is so hard on her mom.
I know what adjustment has been like for our Elyana, but cannot imagine trying to get your child to trust you, when they are in pain & cannot understand.
It reminds me of the times when God is really trying to heal us & make us strong, yet we cry out, not understanding our loving Father, who loves us unconditionally wants what is best for us. Kya doesn’t know her Mom & Dad are fighting with all their might, to save her with the help of our loving Father. Someday, when she has grown into a beautiful young lady, I smile to think of the revelation it will be to her heart when she begins to understand the great love of Jesus to know she was chosen, redeemed, fought for, and loved unconditionally.
We love you Kya & wish we could kiss your little cheeks. This is the verse I have prayed for Elyana many nights when she is screaming in terror, and pray it now for you & your Mommy.
“And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.” Phil 4:7
This is Tracy’s Update if you would like to read it. I love her ability to find the joy amidst difficulty. A perfect read to get yourself off your mind!
I am so thankful to report we are out of ICU. We moved out around 3 in the afternoon. The ICU rooms are definitely nicer as that part of the hospital is the new area. Very modern and yet it was very difficult to stay there as I could not eat, shower, or use the restroom in the room. So a bit more of a difficult stay but still nice.
The nurse we had this morning was wonderful. She would wait and do everything with Kya all at once instead of constantly coming in and out. She packed Kya up into the new bed and then we headed out and down the hall. Kya kept her eyes on me the entire way and I kept reassuring her I was going with her and not leaving her. We are now in room 904 on the 6th floor of the surgical recovery floor. Not as modern, but nice because the room is slightly larger and I can use the showers and stuff in the room.
Sometime after we arrived, Kya conked out for a while so I laid down on the couch and conked as well. It was a quick nap but much needed.
Kya is still hooked up to the epidural and still has the little tube in her nose going down to her belly. Thankfully, none of the discharge coming out of that tube has given any cause for alarm. Kya has attempted several times to rip it out. Which brings me to a prayer request. Kya has a good 7-8 tantrums during the day and they are pretty violent for her. She will awake from a quick snooze and just go into a rage attempting to rip out every last thing she is hooked up to. She kicks her legs up against the side of the bed hitting the IV lines against the rails. When she sees me, she starts slapping my arms and scratching me. She is understandably angry. The problem we are having is that when she gets into these rage episodes, her O2 levels go all over the place and her heart rate jumps up to the 130’s. It takes a while for her to calm down again and then when she starts to cry instead of scream, she starts to gag on the tube down her nose and throat. After she has her little episode, she will stop scratching and hitting me and reach out to hold onto my hand and I will hold her little hand and rub her head. She finally calms down but it takes a good 15 minutes each time to get her back to “normal”. It is very uncomfortable for her and even though she does not understand, her little fits are making things much worse for her. Please pray that Kya will calm down and be able to keep her O2 levels at a good high and heart rate at a good low.
The emotional side of all of this has been very tough on me, I don’t mind saying. To have your daughter hooked up to all kinds of tubes and machines is tough enough, but to watch her constantly hit at you and scratch you out of anger and then just as quickly reach out for you to hold onto her is very difficult. Her little emotions are all over the place right and I am having a hard time not going there with her and keeping my emotions leveled. Going off hardly any sleep does not help the matter. But tonight was very sweet as I actually got to hold her in my lap for the first time since the surgery. The nurse helped me get her out of bed and let me hold her and rock her. I am including a pic of Kya which was really funny. You may not be able to tell, but she basically just collapsed onto my tummy with her little arms off to the side. It is very difficult to hold her because she has a good size scar on her belly and the epidural on her back. So I just held her by patting her booty and rubbing her head, and yes at the same time. Then it was time to put her back in bed which caused another fit. Not fun at all.
You will all be very glad to know that I did not take out the nutritionist in the ICU ward. I instead spoke with my nurse and told her what happened. She was shocked. I explained to her that the nutritionist made it sound like I had been starving Kya and that she, the nutritionist, was going to start her on formula and table foods asap. In her defense, if Kya had only had the heart cath, she would have been started back on solids once she was able to start passing gas. And if Kya had only had a heart problem, it would look very neglectful on my part to only feed her pureed foods. But that is so not the case with our little brown bear. So I, mama bear, asked the nurse to go over with me exactly what the plan was coming down from the gastro Dr. The nurse said there was obviously a mix up because even though Kya did have a heart cath which placed her in the ICU heart ward, the nutritionist must not have read the chart to find out that Kya had also had major abdominal surgery. The nurse assured me that Kya would not be getting any food until after her dye test on Thursday and then the eating can start possibly on Friday. Even then, it would be very soft foods and no milks. Kya is currently on an IV solution which has extra calories added to it so that she does not lose any weight while recovering from the surgery. I am so glad I spoke with the nurse just to make sure I was not going crazy. Crisis averted.
Some funny and sweet random things that have taken place here, simply for your reading enjoyment. I always like to people watch and at Children’s there is such a diversity of people to watch, I love it. There are a lot of disabled people who work here which I absolutely love. I see a lot of children with genetic disorders causing deformities and yet they are so cute to me. While getting on the elevator, I heard a mom and her daughter, who had a disfigured face, singing Come Thou Fount of Every Blessing. What a blessing that was to me as that is a favorite song sung with my boys and Kya even likes it when I sing it to her.
I had to laugh when a dad with two children sat down to try and feed them. The kids were not impressed at all with the minestrone he had brought for them. The dad carefully set the table and dished out the soup. They had no sooner sat down when the little boy screamed, “daddy, I have to go to the bathroom”. So the dad packed up everything and off to the restroom they went. About 10 minutes later they were back and the dad went through the entire routine again. Shortly after, the little boy yelled out, “daddy, I have to poop.” I just about lost it at that point.
My most interesting moment today definitely had to be when I found the shower in the ICU ward down at the end of the hallway. I had quickly thrown in some clothes and toiletries into a bag and headed down to take my shower sometime around 11 am, much needed by this point. I could have stayed in that hot water a lot longer as it felt so good. But once I was finished, I quickly realized I had a problem….I forgot to ask for a towel. So what is one to do in a hospital shower with no towel? Thank goodness for the wall installed hair dryers is all I have to say. I think that is about as close as it gets to experiencing what it is like for a car to go through the drying process at the end of an automatic car wash. I can honestly say I have never been air dried before today, but now I can say I have.
Well, it is off to dream land armed with my sleeping night shades and ear plugs. I think I’m getting soft because the pullout couch in this room actually feels comfy, go figure.