T+15: Dare we say "outpatient" next week?

BMT doctors are loathe to talk about release dates.  There are too many variables.  They do expect the unexpected, and you'll get out when and if all of the planets align.  So I was fairly surprised when Dr. Tolar said that, yes, if everything continues to go this well, we might be released back to the Ronald McDonald House next week.
I didn't mean for this
picture to look so evil.
I think Sarah is actually
smiling back there.

Ethan's progress over the last 96 hours has been amazing.  His white blood cell count went from .2 to .6 to 1.0 to 1.9 (today).  Yesterday, was the first day that the lab was able to get a differential and calculate his absolute neutrophil count (ANC).  The doctors usually start talking about release when a patient has an ANC above .5 for three consecutive days.  Ethan's first ANC debuted at 1.0 and today kept going north to 1.3.

It's absolutely true that Ethan is currently taking a medication (GCSF) to stimulate his white blood cell production. It's absolutely true that his numbers can and likely will dip, and will certainly decrease once he comes off of GCSF.  But we're all, including Dr. Tolar, very happy and  Dr. T says that these are signs of strong engraftment.

Yaay, doesn't begin to cover it.  Dancing doesn't come close to expressing it.  I feel lighter today than I have in a long, long, long time.  I get giddy when I think about how well he's doing.

It's hard to believe that on Monday, just after Ethan's fever broke, Dr. Tolar said that he had expected that Ethan would develop sepsis because they weren't bringing the infection under control.  I'm happy enough with where we are today, that I won't get on his case for not bringing those concerns to us when they first occurred to him Saturday and Sunday. (Though knowing me, I'll probably bring it up in discussion later to try to understand why a doctor would elect not to share that information.)

Make no mistake, Ethan is still healing, he's still at risk of developing an infection and we've got a ways to go. He's still on a constant morphine drip.  We're reducing that day by day as his throat, mouth and GI tract continue to heal.  Even though the number of key white cells is in the normal range, his white blood cell count as a whole is very low; in addition to which he continues to need red blood cells and platlets--though the interval between them is lengthening.  

As Ethan continues to heal over the coming days, we'll be moving most or all of his medications from IV to oral meds.  There's no good way to shove this much medicine down anyone's throat, let alone a toddler's.  Not to mention that many of these meds cause nausea or taste awful.  We know from previous experience that there's a whole lot of vomiting in our future.

Finally, at the moment Ethan is still on 24 hour TPN (IV nutrition).  They'll probably try to reduce him to 16 hours a day before releasing him.  (Which means Ethan will be on an IV 16 hours a day when he comes back to the house.)  Then they'll reduce him to 12 hours.  At each point we'll try to get him eating his own food again.

All of this could change at any time.  He could develop another infection tomorrow and could easily be in the ICU tomorrow.  All we can do is enjoy today and take it one day at a time.

Ethan's grandma, Lilianne is coming in tonight for a three week stay.  Her timing couldn't be better.  As Ethan's energy is coming back quickly and he'll want to play more and more in the days before they let him out. It'll be nice to have another grown up to play hide and seek with, or to pull the IV pole behind him as he moves around the room.

On Saturday, all of the pediatric patients in the hospital are moving to a new children's hospital building across the river that they just completed.  It's a state of the art facility from a patient, parent and a staff perspective.Saturday morning, it will be all hands on deck.  Our Care Partner volunteer, Sue will be over at RMH with Caleb.  Sarah will be transporting in the ambulance with Ethan, and Lilianne and I will be shuttling over.  It's going to be a busy day, and somewhat stressful for Ethan as he'll be strapped to a gurney with a face mask on for the move.  But it'll be great once we get there.

Caleb at lunch with his classmates from the
RMH charter school

Comments

Erica J. Thiel said…
What else is there to say beyond i'll continue praying and Ethan will continue rocking!!! WTG!

Erica
www.rarelydefined.blogspot.com
Rike Family said…
What an emotional roller coaster you've been on for the last week. Glad to hear that things are looking up now. It's so wonderful hearing how well he's doing. Go Ethan!
Kathleen Joyce said…
How wonderful that he is doing so well. Keep up the positive attitude, I'm sure it's helping him. My daughter Bridget underwent her BMT in July 2009 for Hurler's Syndrome. She continues to do very well. My husband know it is from many prayers, good doctors, and a positive attitude. I pray that Ethan continues to do well and his numbers continue to climb. God Bless!

Kathleen Joyce
Elizabeth said…
So happy to read E's progress this morning!!! I'll continue to pray for both of you. God Bless you both and hang in there!
Cheryl Garris said…
What a trooper he is. Way to go Ethan! MPS won't keep him down. So excited for you guys that things are going well. :)
By the way, the planets HAVE aligned! http://www.bestsyndication.com/?q=20110505_planets_align.htm