It would be hard to remember everything exactly over a period of 52 days. I remember events clearly, I just don't always recall their order.
Once Kenzie was back on the bipap after her blood gas showed that she was in respiratory acidosis, I was still not in fear for her life. We had done this before where she just needs some support for her lungs while waiting on the virus to run its course. But I guess after having done it before a number of times, it made this time harder for her. They had tried a few things to help improve her oxygenation such as a mag drip and some continuous bronchial dialators but she wasn't improving. They told me that they would give her a couple more hours to respond but that they would likely need to intubate her. This is something that we've been through before too, so again, I wasn't in fear for her life. I mean, I knew it was possible because of the severity, but I didn't feel it could happen. Because I wasn't fearing her death, I didn't feel like Adam should make the drive all the way from South Carolina. I knew he would want to be with her, but I also thought that he should keep working and trust that I would let him know if he needed to come home. He was able to video chat with her before she was intubated, but she was not responding to anything like normal.
I think it was the following day when I started to suspect that this time was different. I called Adam back and told him that I though he should come up. I had already called her Dad. Even though Jason (Dad) isn't a part of our lives on a day to day basis, he is usually willing to come to the hospital. He mostly comes only when I need to leave, but this time he came just to see her.
They called the anesthesiologist up to do the tube insertion. They feared that her severe scoliosis would make it difficult to place the tube. The anesthesiologist are the ones who you call for scary placements. They were able to place her ET (endotracheal tube) without difficulty, thank goodness. They let me stay with her for this procedure, that was helpful for me. I know too that they are more willing to let me stay if I can demonstrate to them that I won't be an issue they need to deal with by either passing out, crying hysterically or asking a lot of questions. Parents of special needs kids tend to learn that lesson early.
Now that the tube had been placed they were able to get better volumes in her lungs but her body wasn't able to oxygenate very well. She was on high bipap settings and about 60% oxygen just trying to keep her body oxygenated in the 90s. Adam made it up, he and his girlfriend drove straight through the night after work, it's an 11 hour drive for them. He made it just in time. Kenzie was having more and more trouble and her body was failing. It's never a good thing to see the attending physician just hanging around the doorway. This attending physician is someone we knew from previous hospital stays while he was still in his residency. He told me that he was "running out of his bag of tricks". When I heard that statement that was the first time I have ever thought that she would likely die. I am just so glad that Adam was there. Even though I am his mother and he was worried for his sister, I took comfort with having him there.
They had an idea to turn her over onto her stomach. I didn't know this was a thing they tried sometimes and Mackenzie would never normally tolerate being on her stomach, but they had at least 8 people bedside to move her. The goal is to give the lungs as much space as possible, they are bigger in the back so to speak. She immediately dropped her pressure and her oxygenation to a dangerously low level. Adam was in the room at the time but I ushered him out. I now know firsthand how hard it is to watch someone you love die. I still have nightmares after seeing Mike receive CPR for a half hour with all the blood coming out of everywhere.... ears, nose, mouth, trach stoma, g-tube stoma.... it's a horrific sight and I wanted to spare Adam the possibility of having to see it with his sister. Jason was there so I had him stay with Adam outside the room so that I could go back in for Mackenzie. They needed to quickly position her back to laying on her back and I needed to try to make sure they didn't break any bones while doing so. Her bones are brittle.... it was now a lower priority but I still felt like it was necessary.
After she recovered from the position change, the attending took me aside and told me that it was looking less likely that she would live. He started talking to me about a procedure they do there called ECMO. I had never heard of it before but he said it is what they do when there is nothing left to do. He said that she currently meets the criteria but it would be up to me to approve the procedure. That I could instead chose to just let her die.
This is where it gets strange for me. I determined later that his questions were trying to get me to decide if her life was worth saving but since that question would never cross my mind, I didn't understand his questions. He asked me "what is Mackenzie like?". I thought it very strange given the circumstances that he wanted to get to know her. My best guess was that he was preparing me for the possibility that she would have severe brain damage with all this and may not be the same girl. I was caught so offguard by his question that my answer now seems to be just as odd..... I said "she will definitely let you know if you picked the wrong movie for her to watch". That was my answer.... that my child will tell you when she is pissed off. I know I was trying to give him proof that she had a quality of life and a desire to interact and be happy...... but I explained her entire existence to this man by saying how she gets pissed off.
With the ECMO procedure, they explained to me that they would be bypassing her heart and lungs and doing all the work for her until she could do it herself. That the success rate was maybe 70% for kids who had come in typically developed. For Mackenzie, her odds were closer to 40%. That's if she could survive the placement of the tubes. They speculated that the tube placement itself might kill her due to her scoliosis.
I am very fortunate to have some highly intelligent medically trained friends. I messaged them and decided that I would not consider the ECMO procedure until the ventilator settings had been maxed out. There is some research saying that waiting could decrease the odds of survival, but 40% was lousy enough that I thought it best to avoid it at all costs.
Mackenzie was moved down to the second floor ICU from where we were ..... 8th... since that is the floor that ECMO is done on.
As a testament to the prayers of all the friends on facebook and extending to their friends and a testament to the incredible strength and will to live Mackenzie has... she did not need to have the ECMO procdure done. She was on their radar for 3 very long days, but was finally cleared. Once she was cleared was when I realized that she was even on a watch. One of the nurses who had been assigned to her came back in just to check on her and she told me that she wasn't really her assigned nurse that day, she was an ECMO nurse and was watching her.
While we were there I know of at least 3 other children who had to have ECMO done. I don't think they lived.
Thank God Mackenzie avoided that same fate.
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