We received this serious update on Kya today. Continued prayers are so appreciated.
Our hope rests in the truth that our Savior has conquered death & all things are in His hands. This is our first big celebration with Elyana home, and all day I can’t help but think of Tracy & family. I will post pics later of our little gal on her first Easter…but wanted to get this out to you all.
I wanted to send out a quick update today. Yesterday and today have been very difficult. A boy passed away this morning around 5 am. He was 15 and his family were all here when he passed away so it was very difficult to see all of them in the lounge area crying and hugging each other. Preston is nearing the end of his little life. The doctors have done pretty much everything they can for him so now it is just a wait period. Preston has a genetic disorder which causes his valves to close off and narrow very random and unpredictable like. He has had surgery but the doctors can’t do much more for his valves. Preston was down in the cath lab for a routine cath and ended up being down there for 12 hours and coded a few times. His room is two rooms down from ours so it has been very difficult to watch his mom come and go as she is always in tears right now.
Today started off great, Carlton came down with the whole fam and I got to take everyone back one at a time to see Kya. Colton and Jackson were very interested in everything Kya was hooked up to and what it all did. Grantham was not so cool with it all, he was very serious and when I asked him if he wanted to leave, he said YES YES. I was kind of surprised as I figured he might like to see his sister restrained to a bed. But I think it was a bit overwhelming for him. He quickly snapped out of it and in the end, I think it did his heart good to know Kya was still part of the family.
The gang had plans to go to the Space Needle and the original Starbucks so Evelyn could get her fix. From there they headed to our favorite bakery the Flying Apron. During that time, my friend Jana came down to hang with me, treated me out to lunch, and then took me to the grocery store to load up on some wants more than needs. We were only gone a couple of hours and then came back. As we headed to the parent lounge to drop off my food, I noticed the lady at the front desk giving me a rather strange look. Whereas I am use to the strange looks in general, this was stranger than usual. The next thing I know, Kya’s nurse, Collin, comes running down the hall. He asked me if I got the 4 messages he left me. UH OH!!! I told him no and that my phone never rang. He then told me that while I stepped out, Kya’s blood pressure dropped with no warning at all and Collin had to call a code blue on her. Collin and John went to work right away and another doctor ran in to start chest compressions on her. They were able to revive her pretty quickly which is good but the bad part is that obviously this is a major setback for her and even more frustrating is that nobody can figure out exactly what went wrong. Kya was cool as a cucumber so we are not sure what caused her BP to tank so drastically and so quickly. It may have been the fact that her brothers visited or the fact that she heard I was going to the store and did not take her, both of these usually get her pretty upset. Regardless, she is not coming off her breathing machine any time soon as she seems to have no O2 reserves in her lungs at this point and can’t tolerate not having to breathe on her own.
So we are hoping for a more peaceful night in her room and preferably up and down the entire hall as the mood here is very somber with all the bad news and codes having to be called.
At least now I know why the lady at the front desk was giving me such a strange look. She had assumed that I knew a code blue had been called on Kya and found it odd that I would come back to the ICU laughing and looking happy. I was clueless, absolutely clueless. I am very thankful that God worked it out for Jana to be there at just that time as I would not have wanted to go through that unfun little part by myself. Thanks so much Jana for hanging with me and my little blue bear. When Jana and I went back to see Kya and Kya was moving and squirming, I told Kya to say hi to Mrs. Jana and Kya shook her head no. Not sure if it was the muscles twitching or if she really said no but her timing was a little too perfect. The strong will is starting to rise even with a code blue and all the sedation she is under. And that would be where we need the most prayer. Yes, Kya is a fighter and in one sense that is good because she does want to get out of here. But for a heart baby, being a fighter actually works against her because with every attempt made to bring her off the sedation to let her wiggle a bit, Kya goes from 0 to 60 in .5 seconds which uses up all her oxygen reserves and causes her O2 levels to tank and then we are back at square one. When that happens, the nurses and doctors realize Kya can’t come off the machines until she either calms down a lot or has a much better O2 reserve which is not happening anytime soon with her lungs having goo in them and her heart still not being fully repaired. It is very possible that Kya will be in ICU until she goes in for her next surgery which is scheduled for 4 months away. This is obviously not what we were hoping for but we are facing the hard reality that Kya may not be coming home anytime soon.
But mommy is. I decided today that if Kya remains up here in ICU that I would be taking some time off next week to come back home to the land of the living. While in ICU, Kya has a one on one nurse but that is not the case on the recovery floor which would require my being by her side as much as possible. So to avoid becoming an ICU mom who lives here and barely sees the sunlight, I am going to take a break and put my oxygen mask on for a few days. Kya is receiving some of the best care in the country for heart babies and again, I rest in the knowledge that she is in God’s hands and not mine.
I will send a video of the squirmy worm post code blue in a different email.
Much love to all,
John found this pic of Kya & Elyana. We miss you Kya & are praying so hard for your little heart & body to heal & get strong!