Tracy/(Kya’s Mom) writes:
Today was a morning filled with praise and relief. I made it to Kya’s room around 8 am and had enough time to shower and prepare for ECMO turn off attempt #3. It was another very long process which is code for a long time of nerves on moms part. My friend Chessa came down to hang with me this morning and it was nice to have someone else be there to see the gravity of what each morning has been like for the past three days. After about three hours of tweaking and lowering Kya’s levels, she was officially off the machine and was now ready to have the cannula’s taken out of her chest. So her little room was turned into an OR again as there were a few spots that needed to be stitched.
Chessa and I went outside in search of sunlight and warmth. There was pretty good cloud coverage out so we chilled, literally. We filled our time talking of adoptive children and the craziness of raising children period. When we came back up, Kya was almost finished with her procedure. A few moments later and we were able to go down the hall to see her. She was again heavily sedated and on muscle relaxer and therefore, looked very relaxed and chilled. It was so nice to see the big ECMO machine be taken down the hallway away from Kya’s room and also freeing up a little more space on one side of her bed.
We are not in the clear just yet. Kya is still on the respirator machine and will start to be weaned off that over the next few days. Preston’s mom was telling me how Preston took 23 days to be weaned off his because he was having setback after setback. I am hopeful it will be more like 23 hours for Kya. Her blood pressure levels are good and her heart rate is back to her normal high of 120. Her O2 levels are way down in the low 70’s but I was told that would be the case until after the next surgery to repair her heart so to not be alarmed.
After all the real life drama, I said goodbye to Chessa and headed to the family resource center where I had signed up for a free chair massage. I never understood that term because what chair needs a massage? It should be called the tired, worn out, crazy ECMO mom massage. That came at just the right time. I felt like I was finally able to relax a little since Kya was off the machine so that helped. However, the therapist was from Belgium so I have to confess, it was very hard to hear him talk and not switch over to my amazingly convincing British accent, I don’t know the Belgian accent but it sounded almost British. I felt like I was transported into the world of BBC but I think I needed subtitles. At one point during the massage, the guy asked me if I was going to continue to talk…WHAT??? I was like, fine dude, I will just keep my totally awesome british accent to myself, so there. Actually he asked if I was going to continue to adopt. Amazing how that slight accent made all the difference in the understanding of the sentence.
After the TWOCECMO mom massage (horrible acronym), I was basically putty so I went to find my closet and laid down for a bit. I caught up on some emails many of you have sent and just laughed and cried while reading the funny things going on in your lives. Stories about dresses, lice, flowers, Indian reservations, salmon certification, blue jackets, sbux addictions, pregos, gummy bears, haircuts, wooden spoons, running, g free breads, homecomings, etc. All very random but they help so much to bring me back to reality and are a constant reminder that I won’t be here forever.
So for tonight, I ask prayer that Kya will continue to hold her own and do ok off the ECMO machine. Pray that she will be able to be weaned off the respirator and we can hopefully be moved down to the surgery ward before the end of the week. That would be a very realistic and wonderful goal. Pray for my dad who did his bone biopsy today. Pray for Carlton as he is living in three different worlds right now (hospital, home, and work) and trying to keep all things in order and running efficiently. Pray for the boys who miss Kya, and sometimes mommy too. Continue to pray for Preston and Hudson. Still no change on Hudson. Preston was also taken off ECMO and had his chest closed today but during the procedure they found he did have an infection. So now he is dealing with that on top of everything else. Preston’s mom, Cassie, could use some prayer as she has not left his side during these last several months of him coming and going from here.
Much love to all.