August 29: Day +58

Happy Birthday today to my daddy in heaven. He would have been 82 today. He passed away in 1997, and while I know that we will see each other again, I miss him.

There was a lot of missing going around today. Ali cried all the way home from Target because she misses Lucy, our pet dog, who is staying with grandma and grandpa back in CA. Angelique and I miss Bella, and we really noticed yesterday and today... not like on any other day it isn't palpable, but this weekend just really hit us. I think it's because the three of us went out into public to do stuff, and we just noticed Bella's absence the whole time. Tonight at Target, it was really evident. Just before we came up here to MN, we had turned Bella's car seat around to face front. It was really cute seeing Ali and Bella in the back seat together whenever we went anywhere. Well, that car seat has been empty, and a catch-all for magazines, Ali's toys, etc. for faaaaaar too long. The empty car seat was what tore me up when Angelique was discharged from the mother baby unit last June. That image hit me this weekend again. The other empty item that hurts to see is Bella's crib. It's been empty for so long now, I hardly remember her sleeping in it that first week here. Man, I miss that little girl. I can barely stand it.

The good news is that we started giving Bella the max dose of norepi and hydrocortisone and her blood pressure finally stabilized! We were also able to finally D/C the vasopressin, an antibiotic, and an antifungal. 3 less meds! Yay! We also figured out that we will run Bella on the Prisma at -10 mL an hour for 12 hours at a time, then run it at even/net zero for 12, then back again to -10 for 12, etc. We realized that Bella doesn't replenish the fluid from her tissues back into her blood stream at 10 mL an hour. So, if we continue to run her at that deficit for a couple of days in a row, even though she is still fluid up, her vasculature ends up too dry. Every day, we learn a little more about finding the balance for Bella while her body works on healing.

Ali's artwork adorns the walls of Bella's room...

It is an exhausting game of titration. While we really are giving it our best, I can't help but feel like we're failing her. For example, her weight is 14 kilograms today. She was 10 kilograms 2 weeks ago. Folks, that is just under 9 POUNDS of fluid that we have put on her in two weeks. That's no fun. We are now treating this ulcer on her head daily as well, and she sure didn't come over with that either. She has 5 open wounds currently on her from staff shearing her skin off with fingertips wearing dry gloves (three are underneath those two squares on Bella's scalp above). She has had over 10 since being in the ICU. Each wound is between the size of a dime and a quarter. I don't know about you, but if I tripped and skinned my knee and sheared off that same amount, I'd notice. I think the worst part of it is that of the 10+ wounds she's been given by staff, NO ONE has copped to a single one and filled out an incidence report. The only nurse with enough class to call this out has been Chris, her current daytime nurse. She is now entering reports for every wound Bella is given. At first, I was a little hesitant, after all, it's EB; sooner or later, we've all left our mark on Bella. However, staff has to be held accountable for whenever they injure a patient, no matter what the patient's diagnosis is, and regardless of intent. I would assert that over 95% percent of med errors and injuries are not malicious, but we must be vigilant to give the best care we possibly can at all times. Patients and their families count on this. After all, wouldn't you if you were the patient?

Sorry for the doom and gloom; this journey is not a straight line, it is not a paved highway, and it is not a glass-covered pond. It is roundabout; we are clearing the brush as we go, and it feels more like we are adrift in a big emotional ocean, where the waves lift us up, then crash down on us. Remember that life preserver analogy from a few days back? That is what keeps us afloat.

It's interesting; my faith doesn't always make me feel better. It is often far more practical. It helps my brain continue to function. My faith gives me just enough peace to fall asleep at night, and just enough strength to get out of bed each morning. I am grateful that the last place I am before bed is on my knees before God, and the first place I am in the morning is right back down on them again.

This journey has literally brought me to my knees! Having said that, I have to say that dropping to my knees has been a powerful experience for me, especially since I'm not a 10 year old with elastic legs anymore. Just the physical act of getting on my knees... it is such an iconic position of surrender. I don't care if you are doing it to pray to God, Allah, or anyone; just try dropping to your knees and remaining there for 60 seconds. The submission of ego and pride to the totality of a world that is beyond my control is actually very liberating. I can give up trying to control and carry the weight of the world on my shoulders. I can GIVE UP ( pay attention to those two words... ) my troubles, my fears, my concerns, my pain. Where can I give it? UP. To God. Give - up. May you never quite hear or read that phrase the same way again.

Will he take it? He always does. Imagine my fears, worries, etc, are in a big backpack on my back. Imagine God walking up behind me, and when I drop to my knees, He grabs ahold of the pack, holding it in place, essentially lifting it off my back. It remains suspended behind me, and he places it over to the side, ready for me to grab and throw back on should I choose to. See, it's always my choice what I do with my backpack. I can give it up, or I can take it up. Being the imperfect human I am, I do a mixture of both. God's always there to take it, and it's always there for me to take back. Either way, I always have a choice.

"Visit the Doctor," By Ali...

Tomorrow morning: more biopsies. Speaking of biopsies, Ali played clinic nurse today and had me (the doctor) give her, me, Angelique, and the baby doll biopsies. Ali wrote out a schedule (see below) and drew how many biopsies each person was supposed to get and at what time their appointment was. The scribbly lines represent our names... Start saving for med school, right?

If you don't chart it, it didn't happen!