Wednesday, May 11, 2011

Home again, home again

Just a quick post tonight to say Keegan was discharged late Monday afternoon from the hospital.  (Yes, I'm well aware that today is Wednesday.  Thank you.)  The bleeding from his port and into the line has slowed but not stopped.  Keegan's blood counts came up but weren't great when we left.  His energy is up and down, and his color is plain awful.  He will have labs drawn tomorrow or Friday, so I guess we will see where he is then.

We still are not entirely sure what happened with his port.  Our best guess is a combination of three things: trauma to the site from him being an active toddler with a big ol' needle in his chest, a temporary bone marrow depression (when his platelets, red blood count, and white blood count all dropped for some reason), and an increase in his vascular pressures.  Who knows why his bone marrow took such a dive there from Wednesday to Friday.  It's Keegan...there's no explaining it.  The vascular pressure increase is likely a combination of things, but mostly the finger ends up pointing at his kidney.  His blood pressure has gone up over the last month, indicating his kidney isn't too happy (more likely his kidney than his heart at this point).  He is being pumped full of fluids every day that his kidney has a hard time eliminating.  We knew there seemed to be a lot of back pressure in that line, but it wasn't until Sunday night that it all came together.  There was an air bubble clamped in Keegan's line just before we hooked TPN up.  The nurse noticed that it was throbbing with Keegan's heartbeat.  Crazy.  Unfortunately, there's not a lot we can do about it.  We intentionally left his needle alone to give it as much time to heal as possible, but he will be due for a new one tomorrow.  Hopefully, it will be more manageable with time and not be such a huge problem.

I don't mean to be intentionally elusive, but we did get partial results from Keegan's intestinal biopsies back this week.  We have not made any firm decisions about what to do with them just yet, but the wheels they are a-turnin'.  I had a very long call with several of Keegan's doctors  this afternoon.  Ironically, his cardiologist and hematologist will have the most say over this plan.  We have consulted with them, his GI doctor, the hospital's chief pathologist, and his team in Boston.  There are still many questions to be answered and a few more blood tests that need to be drawn.  It may require us to have a brief intentional inpatient stay for treatment.  Over the next few days, we should have a clearer picture of this plan, and once I have a better understanding of it all myself, I will discuss it more here.  The greatest thing about it is that it is much more likely now that we will be here at home for at least another month, especially for Audrey's birthday.  That's a huge weight off our shoulders.  We will still probably be headed to Boston for management afterward, just not right away.

For now, we would appreciate your prayers for our wisdom, clarity, and guidance, as well as Keegan's doctors', as we make these plans and learn as much as we possibly can to help Keegan.  I can't deny my excitement that we may possibly have an answer or at least a feasible plan to help Keegan after almost four long years of not knowing anything at all.  However, we are still learning, planning, and consulting, and there are no guarantees that any treatment we try will work.  We simply are asking for prayers that we can make the best decisions possible with what we know now.  Thanks so much, as always.  We are so beyond humbled and blessed by your support.  More soon!

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