Homecoming II

There were obviously some details missing from yesterday's blog. The missing pieces I'll be going over today just didn't belong in there with the sentimental journey I chose to go on and some days, I've honestly had it up to here with the details. Besides that, there are so many moving parts between taking care of Phil, seeing to my children's well-being, connecting with visiting friends, being available for consults, dealing with insurance, praying, etc., that I needed to keep it short and literally, sweet. Oh yes, and there is always remembering to eat, shower, breathe and sleep. Thank God for Trenna and Rene who are always willing to do my laundry, watch my kids and have a meal ready for me when I eventually get home.

I had been trying for the past three days to get to this blog but circumstances (which I've learned so well, are always out of my control) had prevented me again and again from writing it until yesterday. Now on to the details of his discharge as I know them.

The plan is to go home on IV Ambisome once a day and to have daily blood draws to watch the kidney function, electrolytes and blood counts. In addition Phil has been started on an iron binding medication to make him slightly iron-deficient. The Mucor needs iron to grow so by robbing it of iron, it weakens it. Also, Mucor hates an oxygen rich environment so HBO (hyperbaric oxygen) treatments have been prescribed. The hospital that Phil works at, Sharp Grossmont, has a hyperbaric oxygen chamber in which Phil will sit for an hour or two, three times a week for a month. The chamber looks like a small submarine and is filled with pressurized 100% oxygen. The point is to expose the Mucor to an environment which it abhors to weaken it from that angle as well. So far, the insurance company has approved the first two of these treatments and we are working on the HBO. It is not the most crucial of the three so we will continue to duke it out with the insurance as we move ahead.

RESET: As I am sitting here, the covering ID physician has come in and told us that Phil's creatinine, a measure of kidney function, has dramatically risen since yesterday. This is despite backing down on the Ambisome and giving him 2.4 liters of IV fluids a day. He is very concerned about sending Phil home on oral hydration and wants to back him down to every other day Ambizone. However this raises real concerns about the efficacy of the Ambizone against the Mucor. He will be advising Dr. Kossman that Phil will remain here another day to see if this lab result is an aberration and to make sure he is really ready to go home. In our experience, rarely has one day meant just one more day.

When I asks Phil how he feels and what he thinks, he says he'll do what he has to and he'll keep taking his lumps. "What can you do to change it?". And although he seems so chill about it, I know he is really disappointed, as we all are. He was so close!!

This development carries so many implications for the future. Yet, in keeping with my strategy of taking one day at a time, and sometimes 12 hours at a time, I'll be focusing on what is right in front of us at this moment and will keep you informed as I know more. Please be patient with me as I mentioned there are many moving parts in this fast-paced drama. I WILL be in touch.

As ever, your friend and companion on Phil's heroic journey--
Sally