Unhealthy distraction.

Since July we’ve been dealing with several aspects of Q’s health. She’d had a hospitalization because she was becoming septic due to UTIs. While it started in July of 2019, this past April took things to another level. After a horrifically bad UTI and a trip to the ER, we consulted with urology. Q has been through several tests, procedures, including an epic rare complication (rare, because of course) that included a scary-middle-of-the-night emergency surgery that TV shows are made of and put her transplanted kidney transplant in jeopardy.

As if that isn’t enough, the liver is causing most of the trouble now. We’ve found it’s best to keep our expectations – if any – to a minimum where health and the family are invovled.

Over the last several months and especially the six weeks or so, I worked with nephrology, hepatology and urology (both children’s & adult nephrology) departments to try to get answers. The plan we got early in November was the culmination of the letters I wrote (remember those way back in July?), the surgeries, procedures, the tests, hospital stays, and phone calls and emails between myself and all of the practitioners.

Over an hour’s appointment a month ago, the head hepatologist (he took over for our regular one because of all of Q’s complications) came with a slide presentation, his patience, and the ability to slowly spell for me the diagnoses, and the medications and procedures names. I am happy to report that he has a very solid plan. It feels well thought out and while it’s not completely conservative (i.e., invasive testing, waiting, evaluating, invasive procedures, etc…), its steps get more serious in nature as we go. I mean, from where I sit in my non-medical professional role, that’s the case.

We’d had an MRI scheduled at Children’s for the last five weeks. This Monday I found out that Kaiser didn’t want to approve the payment for it at Children’s because they have MRI capabilities in-house. Usually, that isn’t an issue and they defer to what one of her team members wanted but in this case, they did not and our hepatologist relented. In what I have found to be positive of being a Kaiser member, the wait times aren’t usually long for scheduling. When I called today, they had the notes that it was STAT and we ended up scheduling the MRI for Monday night which is just one day later than the MRI we had scheduled. We are hopeful that they will get the doctor information he needs that will provide a clear path to help Q.

Some of the paths are layered and involve some testing and hospitalizations and they involve some years as a doctor. It probably helps to be an experienced doctor who has seen a lot of complicated cases in varying degrees of complicatedness. And also with a twist of some experience with rare thrown in there to add to the excitement – the kind that puts us at the top patients at any given healthcare facility that brings the doctors in the room saying, “Is it okay if our students come in here for this?”

That is 100% true.

Q’s kidney function is at the new normal…we think. As mentioned, she/we/docs had a bit of an issue in August that almost killed her transplanted kidney because of a ureter procedure gone amok. Her creatinine hasn’t gotten back down to her normal of 0.9-1.1 and around is double that number, maybe a little less.

As we do with any healthscare with the kids, we hold on tight to the facts like they are going out of style and we wait for more information until more information doesn’t make sense.

You might like to know that in spite of truly astounding odds against her, Q is doing well in college in her forensics classes. It being online has afforded her the ability to sleep when she needs to and work on school when she can. She is still uncomfortable 90% of the time and isn’t sleeping deep enough for rest. We’d tried to get her on a typical schedule and it was not a great way for her to live or for us either, frankly. She has forced insomnia and it isn’t letting up. In a stroke of luck complete and utter chance and the willingness to try anything, a couple of months ago we quit the fight against her body succumbing to exhaustion. So, we let her sleep. Through all of any schedule besides med taking (of course, it’s because some of the meds cancel each other out so they have to be spaced exactly).

In other news, I have a nerve issue in my left hand and a tendon issue in my right hand. Despite many things against us and an extra serving of some other things, us parents decided to stay married and made some new promises to each other recently. It’s important to note, he promised to get me Diet Cokes before I need them for the rest of his life.