Latest update from Kya’s mom:
Happy Resurrection Sunday to all of you. The fact that the tomb is empty is the only reason I can have peace during such a difficult time. I know where my peace comes from and I am thankful for it and humbled by it.
But I could use a peaceful night of sleep and that was not to be the case last night. I woke up several times last night as the nurse kept on having to turn on the bright lights to adjust Kya. Then there was a little guy in the next hall over who was not too happy with his situation so even with my ear plugs in place and my blanket pulled over my ears, I could hear this little guy screaming for several hours during the night. Then at 5am, another nurse came in to help change Kya’s bedding which is not easy because she has a lot of things she is lying on like a water blanket, soft blankets, and pillows to reposition her legs and arms, and she has to be lifted a certain way…but this particular nurse seemed to have only one volume, very loud. I could not block out her voice. Once I did finally fall asleep, John and Collin came back in at 7am ready for shift change. I told them to wake me up when they leave at 7pm. They told me happy Easter and said they would roll some food past the curtain if I needed anything. John then told me an interesting article he had read dealing with fatigue experienced by parents and nurses in ICU wards and it was called alarm fatigue. I think he hit the nail on the head. There is always an alarm of some sort or another going off either in Kya’s room or down the hall in general. Even when I am outside the hospital, I can still hear the alarms ringing in my ears and it has been very difficult to block them out when I sleep. It sometimes seems like my hearing is hyper sensitive now to noise in general and finding quiet times are very difficult for me even when I am in a room with no sounds going off for real. John and Collin agreed that I need to go home this week and let my ears rest if nothing else. They also encouraged me by reminding me that I am no good to Kya or the rest of my family if I come out of the hospital stay just as tired and exhausted as Kya.
I am attempting to do things I know will help me while down here like eating well, making daily walks either outside or inside the hospital, communicating with others, reading my Bible, constantly in a mode of prayer, avoiding depressing things like checking the news or watching too much TV, and yet, the environment on the ICU is still very much exhausting physically, emotionally, and spiritually. The way I see it, if the nurses and doctors need breaks from all of this, then so do the parents. I spent some time today outside while eating lunch trying to soak up a little bit of sunlight. I painted my nails and toe nails purple in honor of my daughter, choked down what I thought was supposed to be mashed potatoes, and listened to some Johnny Mac. All very much needed after the craziness of the past couple of days. I hope to later get out and go for a walk and stretch my legs.
Since getting Kya, I have missed Christmas, Easter, Colton’s birthday, Jackson’s birthday, and Carlton’s birthday. At this rate I am going to miss my own birthday which of course means I won’t age. This is definitely not what I expected when bringing Kya home but it has been a good reminder to me of how sweet fellowship is with my family and friends when I do have it. I am also reminded so much of believers who are in prison and away from their families and church families. Not that my situation is like being in prison, but missing out on those gatherings with loved ones on such important holidays is tough. I am thankful that I can celebrate the birth of Christ at any time and that Christmas is more than presents. I love that the reminder of Christ’s resurrection can be held on to at any time and not need to be celebrated just once a year. I love that I can feel just as close to my Savior while in a hospital as I am while at home, in church, or in another country. I don’t have to go through a mediator, He is with me all the time and He sustains me in ways I did not know I needed. God is always surprising me by helping me to see the little things He does in my life and forcing me to not always look for the big happenings or desiring big answers to prayer, just the quiet reminders. I now long for more quiet reminders and do not look to be dazzled by Him but find myself very content in the small things He does for me.
While in ICU and watching as other parents grieve the loss of a child, the reminder of what God willingly gave up in the life of His son so that I could be saved becomes so much more real to me. I would not willingly give up Kya or any of my children so someone else could have life, I’m kind of selfish like that, but God did give Christ and not only gave Him up as a sacrifice, but a sacrifice that had to bear the punishment of my sin so that I could be set free, and if you talk with my parents, that was quite a lot of sin. What amazing and unselfish love Christ has shown me. But knowing it is not enough or as GI Joe says, “it’s half the battle”. The other half of the battle is that sin has to be dealt with in repentance and faith. Head knowledge is a start but not what saves a person. Good works are great, but not what saves a person. Adopting children and nursing them back to health are awesome, but it does not erase the sin debt on our lives. Only when we repent and turn to Christ agreeing with Him that we should have paid for our sins and loving Him all the more because He did pay for our sins, then the transaction of salvation can take place. All of those thoughts flooded my mind in the wee hours of the morning as I was awaken to the sound of Kya’s night nurse quietly singing “Yes Jesus Loves Me” to my little brown bear. I just sat there listening and thanking God for yet another little quiet reminder and for not giving me big answers yet. I need to learn more to see those little things.
Nurses and Besties
I am including pictures of Kya’s nurses who saved her life yesterday when she coded. They sprang into action calling in back up, adjusting Kya’s meds, starting CPR, and attempting to contact mommy on her non-working phone, which thanks to my friends Rich and Jana may be a thing of the past. Collin and John (who is in training) earned a squadron medallion and my grateful thanks and respect. John and Collin have been by Kya’s side and were completely worn out last night when they left to go home. They both told me they had enough of an adrenaline rush with Kya and needed some sleep. But they arrived early this morning ready to work some more on this little gal. I’m here to tell ya, this little gal can wear out the strongest of heart. It is nice to see her nurses care so much for her and how they do bond with the kids and the families here.
Kya’s respirator tech today is named Shon and he looks and acts a little like Pauly Shore, wow flash to the past. Kya was getting all worked up when Shon was talking about her and I told him that she hears everything he is saying and she is mad at him. Shon informed me that he and Kya were tight and understood each other and that they were Besties. I had a good laugh from that. I told Shon that I take pics of all Kya’s nurses so Kya can one day go back and read all my updates and see the pics of the people who worked on her little heart. Shon said to make sure I changed his name to protect the innocent and to make sure Kya did not one day come after him because he has seen how she can fight and she scares him.
Kya’s night nurse also gave Kya her first “bath” and rubbed down her little body in warm wipes and then did the best she could to wash Kya’s hair, which is getting so long and pretty. It was very soothing to brown bear and I think Kya bonded a little with that nurse.
Today was a milestone day in that Kya had her first poo, aka blow out, which was much needed. I had suggested that she would need a little help with her BM as she is flat on her back and on narcotics which always cause her to be constipated. So nurse John decided to try a suppository on brown bear. I got the full story when I came back from lunch. John said he gave Kya the suppository and that within a few seconds John started to smell something questionable. He checked her diaper and told me he was astonished at how much such a little gal could produce and with no warning. Then he said that sitting right there on top of the poo was the suppository. It was like Kya had been holding it in as long as she could and then when the suppository was inserted she got mad, had a blowout and just to show nurse John she does not need his help, she got rid of the suppository as well, so there, two snaps and a circle. John said he still felt like he was breathing in the residual smells of the poo as it was very fowl from sitting in her bowels for over a week. When I returned from lunch, both Collin and John said in unison and with wide eyes, Kya pooped!!! I think that incident may have startled them just as much as her code blue episode.
I hope to have nothing new to report tonight and hope that Kya gets some rest tonight. She is still not able to come off the breathing machine as she still gets too agitated when they take her off the sedation meds and her O2 levels just tank. This is going to be a long haul indeed. Much love to all of you.