Monday, June 29, 2009

Exit strategy and more

Steve seems to be slowly and steadily improving each day.

He's still extremely fatigued, but when he's alert, he seems more alert.

His pulse-ox level is better -- up to 96 at one point today. (That's on six liters of oxygen, but we'll take it!)

He passed his modified barium swallow study this afternoon. (This is the third time he's taken the test since December 2007. He sits in a chair in a radiology room. He's given food and liquid mixed with barium. An X-ray machine is pointed at his head and neck, and in real time we can see the substance enter his mouth and go down his throat.)

He still struggles with shortness of breath, but we may be dealing with that symptom for some time. (Even after the blood clots dissipate, he'll likely have tissue damage in that part of the lung.)

Based on his swallow study results, the medical team is going to let him resume a regular diet. (He's been on a soft mechanical diet since Saturday.) We will continue to be vigilant -- small meals only when he's alert. He's finding that if he finishes about half his plate, he's OK. More than that, and he starts to cough while eating.

If he does well with dinner tonight and breakfast tomorrow, and if there are no further complications, he should be discharged sometime tomorrow morning.


One of the outstanding questions is if he'll be admitted to hospice care when we get home.

This decision has been a major struggle. We are not afraid of the concept of hospice. But we want to be sure that this is the right time for Steve.

The hard reality is that a glioblastoma in the pons is an awful diagnosis. We are blessed beyond belief to have held on to dear, sweet, amazing Superman Steve for a year and a half.

We know that hospice is necessary at some point in our journey.

We still have great hope that Steve will recover and get stronger from all that plagues his respiratory system right now. We don't want to limit our treatment options in the short term or long term.

I have spoken with three representatives from the hospice group we're considering (the agency recommended by Dr. M). I have spoken to three doctors familiar with Steve's case. We've talked with Steve's parents and with friends familiar with hospice. If I charted for you my comfort level after each conversation, it would look like a mountain range with deep valleys.

My sense right now is that we will enroll Steve in hospice for at-home care and continue our role in steering the plan as much as we can. If, after a week or a month, we find that it's not working, we can take him out and seek other options for some home health services.

When I get discouraged by this process and all the awful scenarios that must be explored, I am trying to stop, take a deep breath and remind myself how wonderful it is to have a choice. We rely on medical professionals to take care of Steve and insurance to help pay for his care, but we still have a choice about where he receives care and from whom.

I hate (and I don't use that word lightly) that we are forced to make these decisions. But I am so thankful that all the decisions aren't made for us.


I'm continuing to add stories about Steve. I love reading about the many stages of Steve's life, and I know it will provide a great lift for his spirits. Send yours to


In case you haven't noticed, in the top right corner of the blog is a link to the Sugar Photography slideshow. For the full effect, turn on your computer's speakers. Maybe grab a tissue or two.


Cyndi said...

Thanks for the kleenex warning on the slide show! VERY beautiful.

Anonymous said...

I'll add prayers for wisdom, discernment and peace to those already being offered for Steve's healing and comfort.
Mary G

Marci said...

As usual, you have broken down the current situation succinctly and with just the right words to capture the heart of the matter. You should be a writer! Oh wait, you are!

I continue to pray for miracles where Steve is concerned.