The Magnificant Q recovered nicely in the hospital, even while it was painful and uncomfortable, from her partial, external bile diversion operation. On top of the exemplary skills and bedside manner of Dr. Romero, all of the techs, nurses, doctors – including fellows and residents, we exceptional. We left on the 7th day after the final surgery to create the bile-ostomy. If the bile removal quits working then we have an excellent case to get a liver transplant approved (even though her liver function is okayish). So that is the next step, which is comforting somehow.
It was a little rough for a couple of days at the beginning. The permanent (until liver transplant) “external bile diversion” situation is a little bit to manage but we will do fine with it, I’m sure. There are few inconveniences in a person’s life that rival that of 24/7 aggressive and damaging scratching caused by liver failure. The inconvenience of changing out a bag of bile every few days is low on the list compared to a life being lived without the torment of what was happening to our Q. The life Q has lived the last several years has been existing in a space where she didn’t feel welcome and in a body that had betrayed her.
After the surgery to make the bile extraction permanent I think her body just said, “leave us alone, we need real sleep.” After years of the most restless sleep you truly cannot imagine and can only be described as soul and dream-crushing.
I have to commend Q for spending two weeks in one room with her mother. Granted, several days she was sedated, but still. We’ve made a good team this stay. She and I are working well together emptying and changing her bile bag (*note to self, find a better thing to call it, STAT), so much so that the bag-changing-training team is releasing us with glowing reviews.
The mastermind and our hero Dr. Romero was officially off the last weekend we were in the hospital. He stopped by to say goodbye on Friday and that we would touch base soon and during Q’s next kidney clinic. He stopped by on that Sunday because he was “doing some paperwork,” but you and I both know he missed seeing us on that Saturday. He should be so proud, or at least I hope he is. As I spoke to doctors and nurses on our floor, the more I am realizing what an innovative approach he came up with for his 10-point plan. I’m still gushing over him, and this is probably not letting up for a while. He’s very humble and brushes off the accolades we try to give him when we see him. Dr. Romero stopped by for a visit while Q was sleeping and we had a good chat about future appts and such. I am not sure, but as I was sorta crying (again) a little bit and talking about how little hope Q had until he came along, he might have just about started to cry. I will never not try to make him emotional.
I am not sure I can truly ever express my feelings toward him and my gratefulness that he just kept going. It’s odd, that thing you feel for someone who helped bring your daughter back to life.
As an aside here is a PSA for accepting help and the tip is super hard… you say, “Yes, you can,” and then you say, “Thank you.” One of my best qualities is accepting help. It’s how this life has been bearable the last two decades.
And I have a cup problem. This proves I’m the problem at home, not my family.
