From Kya’s Mom/Tracy:
Is there an Echo in here?
Why yes there is. I apologize that I have not written much over the weekend but that would be because there was an ECHO machine and an ECMO machine in here which meant a lot of stuff going on on on on…sorry, couldn’t resist.
Here is a recap of the last 72 or so hours. Saturday started off tough as that was the morning they were considering putting Kya on dialysis but praise the Lord, that did not have to happen. Saturday night I found out some good news, ECMO moms qualify for a sleep room. That’s right. I am now an ECMO mom, it’s my new super hero name. Linde, I feel a monogrammed shirt coming on here.
Apparently, the hospital has rooms which are slightly larger than a broom closet with a bed shoved in there. BUT, these rooms are reserved for the NICU moms who are not allowed to stay bedside with the little ones. On the small chance there is a lull in the NICU, a room comes open and it is given preference to the ECMO moms. Apparently someone realized that even though ECMO moms have the option to sleep on the amazingly comfortable fold out couch in the room, they don’t actually get any sleep because of the machines, lights, and voices. The ECMO rooms never rest. So this super hero mom decided to see if I could get a room and God supplied me with a room. The only bad part is that I have yet to have a good night sleep as I just lie there worried about Kya, waiting for my pager to go off, and go off it did. I was awaken on Sunday morning to the sound of a loud beep. I thought it was the fire alarm and I was pretty sure it was in the middle of the night as there are no windows and I was absolutely groggy. Turns out, it was 10 am and the nurses were wondering where Kya Keens mother was because they wanted to start to reduce Kya’s ECMO machine assistance.
After smacking my head three, count em, three times on the phone hanging off the wall right next to the bed, I ran out of the room, still very groggy, I almost forgot I was in the hospital and that probably nobody wanted to know what color my fruity looms are and managed to show up in Kya’s room 5 minutes later with pants, shirt, and coffee stained bathrobe on to nurses who were smiling and trying to not laugh. I was a sight indeed. Maree, Robbie, and Nicole had a feeling that I was dead to the world as I have been by Kya’s bedside usually early enough for the shift change so they thought they should page me to make sure I was not hibernating on my first night in the sleep room. They were laughing their heads off when they saw me come running around the corner thinking they had some terrible news for me. They later told me how happy they were to know I was dead to the world at 10 am and that it was what they wanted me to do.
After I got my heart to go back to a normal pace, the long process of weaning Kya off the ECMO started. I was squished to the back of the room on the couch as more and more machines and people started coming in the room. I was starting to feel a bit claustrophobic and wanted to be out in the hallway where I could breathe but I could not get out as machines were on both sides of Kya’s bed. It takes three hours to wean Kya off the machines and is a long tedious process of checking levels, meds, and Kya’s response to each and every little change they make.
On Sunday, Kya did not respond well at all to having the machine reduced. Her blood pressure immediately tanked and her O2 saturation levels dropped to dangerously low as well. So back up on all the levels and Kya is back on the ECMO for another night.
Mondays attempt at weaning was a bit better as her BP did not tank and her O2 levels stayed better, but her leaky valve proved to be a problem. Dr. Chen is aware Kya has a leaky valve and was attempting to repair it during the last surgery but was unsuccessful. The discussion was to possibly wait to repair that valve when she has her surgery where they actually cut into the heart and to also wait to see if this surgery she just had would help to repair her lungs more thus possibly helping to repair the leaky valve, but at this point that does not look to be the case.
So the plan for Tuesdays weaning event is this. Attempt again to take levels down and see how Kya responds. If she still does not respond well then talk of another surgery will take place and then a possible transfer to the OR for valve repair/replacement surgery.
As you can guess, I was not thrilled with this information. The valve repair surgery would be very risky for Kya because of all her other heart problems and because she is still trying to recover from this surgery but it may be necessary as she can’t live on the ECMO machine forever. The longer Kya stays on the ECMO machine, the greater her risk is for stroke and brain damage. That is why they attempt each day to wean her off the machine.
So enough bad and slightly frustrating news. On to the good news. Daddy got to come see his princess last night and to give mommy a much needed hug and foot rub. Thanks to some friends, Carlton was able to treat me to dinner off the hospital campus. We then headed to Safeway for a quick grocery restock and then back to the hospital. Carlton was able to talk with Kya and watch her squirm and wiggle as she was coming off the paralyzing meds. She is still heavily sedated, but she can feel when we touch her and hear when we talk to her. Her response is usually delayed and sometimes very funny. When the nurses mess with her, all of her little extremities go into full kung pow Kya mode. She starts flopping from side to side, legs start kicking but in slow motion, and hands start pulling at tubes. So when I came in this morning, I was not at all surprised to notice that Kya now has arm restraints. Her little arms are gently tied to her bed as the nurse told me that Kya attempted to rip out her chest tubes last night. You know, the tubes that are keeping her ALIVE!!!! Apparently, even though this little stink pot is heavily sedated, she is determined to rip out her tubes, not her nose tube, but her chest tubes which are coming out of her open chest cavity. I told the Dr. that if Kya could, she would sit up on the bed, rip her little chest patch right off and with blood spurting all over the place…she would give Dr. Chen the death look and just dare him to try and close her chest.
Nurse Jane, who is running the ECMO machine, told the Dr. that when we do bring Kya out of sedation, nurse Jane was going to personally deliver Kya to his office. Reason being? Nurse Jane has noticed that Kya is a bit of a fighter and figures that 5 days of sedating her fight is not a good thing and that Kya is going to just go crazy when she does come off and that Dr. Chen should be the one to handle her and not mom. I quite agree!!!
I was able to speak with Hudson’s grandfather a little today and Hudson has taken another turn for the bad. His heart rate jumped up to 270 last night so back to the drawing board for that family.
Preston has come off his ECMO machine and mom was so glad for that. He still has a long way. Mom told me that Preston is so swollen now from the meds that he looks oriental. “What a coincidence”, I said, “so does Kya”. She got a good and much needed laugh from that.
So I have had some questions asked to me lately and I will take the time to try and answer them here.
What are some practical ways we can help? If there is one thing I have learned in all of this, it is this….not accepting help is crazy. Having been on both sides of the equation…I know it is just as helpful to those outside of the hospital to feel like they are doing something to help and putting their prayers into action. So here are some suggestions.
Pray being at the top of the list. I can’t stress how important it is to me to know people are praying and trust me, I can’t do this without people bringing my little gal and my family before the throne of God who never tires of hearing our petitions.
Emails. I absolutely love getting emails from you about the things you are doing. Please don’t think I don’t have enough time to read through my emails, quite the opposite. Your emails are a lifeline to me and they bring me out of this sanitized place and back into the real world. Keep them coming.
Gift cards. If you are able and want to help out monetarily, gift cards are always welcome. You can be my supplier for my sbux fixes, grocery cards, gas cards, red robin is a favorite of the boys…etc.
Visits are always welcome and visiting hours are from 8-8. The only catch is that while in ICU I can only have one visitor back there with me at a time so just let me know when you want to come for a visit and I will make sure it does not conflict with someone else.
Love on my boys.
Pray for my dad as well. It has been very difficult for me to focus so much emotional energy on Kya and decisions needing to be made with her and still be able to pray without ceasing for my dad. Please stand in that gap for me.
When we are home and my MIL is gone, there may be some more practical ways to help like meals, cleaning, grocery shopping etc.
How do you find humor in all of this stress? It’s true, I have a very weird sense of humor and usually have a different take on life. I am not always a comedian but I will never forget my mom telling me how one day I will laugh at the stories I tell her of the kids and I said, why not laugh now. Ever since then, I have tried to find humor in things that aren’t necessarily funny on the outside. So now I find humor in things like tripping off the tiny bed in the closet room and throwing my watermelon all over the wall leaving nice red streaks on the white walls of my room making it look like a murder had taken place. What’s not to laugh at? Seriously, I do take all of what is happening seriously, just not too seriously because I know Kya’s life is not in my hands. I rest in full assurance that I am doing all I can to help her but know that God is in control of her little life. That takes so much pressure off me and allows me to laugh a bit more.
Do you like the beds down there? No…ok I threw in that question.
Why would you adopt a little girl who may not pull through? One answer…maybe she will. Pure and simple, I have no idea what the lifespan of any of my children will be. Kya’s life is just as precious to me as my boys and Carlton and I knew we would risk losing her if we adopted her and put her though all these surgeries. But we knew from the start that she was ours and even if she does not pull out of this, she will have had 4 months of a family who loved her and will continue to love her no matter what happens. She has never had that.
Do you like the food down there….ok another Tracy question and the answer is yes, it is tolerable if you don’t mind eating salad for pretty much every meal because I can’t risk eating the other stuff. I actually love eating salads I don’t have to make or clean up after so it’s all good.
I hope that answers some questions I know have just been burning in the back of your mind. Much love to all and I will try to report tomorrow night after ECMO attempt #3.