Saturday, September 17, 2011

Back to the ICU

Keegan was transferred to the cardiovascular ICU here in Boston this afternoon.  We were able to stop the bleeding from his bone marrow biopsy site last night for a little while.  It started up in earnest gain around 11am, and it hasn't stopped since then.  He is also pooling blood into his hips and back because of the bleeding problems.  They are doing what they can within the realm of the Macrophage Activation Syndrome (MAS).  If they give him certain things to help his anemia, his body won't be able to use it.  If we give him clotting factors, his bone marrow is so confused that it could risk forming a clot somewhere besides the site where we want them too.  The doctors truly believe that if we can treat the MAS, we can get his blood/bone marrow to behave a bit better and at least benefit from any therapies we start.

Keegan's blood counts have continued to drop and inflammation markers have continued to rise.  Despite this, the doctors think that it's a good sign that the fever has not returned since last night.

That's all I was able to write earlier.  Keegan has been bleeding for over 12 hours continuously now.  Giving IV clotting factors because we have to now.  Fentanyl and valium too, as he bleeds more as he gets upset.   Will update more tomorrow.  Thank you for continued prayers for our Bug and our family.

Earlier this morning, snuggling with his Bummer Bear and puppy.
He should be pinging off the walls with this steroid pulse, but he has spent more time asleep than awake.
A good thing because he is so uncomfortable otherwise.


Andrea Riojas said...

Still praying for your Bug as always. Tonight extra prayers are being said for you and Gray. Ya'll are such strong parents for such a brave boy. Know that so many others are praying as well.
Hugs from Texas.

Stacie said...

What an amazing boy Keegan is!! I pray he literally feels the sweet, healing hands of Jesus holding him during this time. Continued prayers. Thanks for the update.

Much love,
Stacie Smith