Sunday, February 27th: Day +10

A Note: Although the purpose of (attempting) to keep this blog is keep everyone informed on Chase's progress, my secondary purpose is to educate as well.  I never knew anyone who had gone through a bone marrow transplant - any transplant for that matter, but I assumed a marrow transplant wasn't as serious as an organ transplant. I was quite wrong.  Each transplant recipient has their own unique experience, and this is what I want to document; how the chemo and the engraftment of the new marrow affects the body.

Keeping this in mind, I will be posting pictures that may be difficult to look at.  But pictures speak for themselves, and he asks for pictures.  I also see this as documenting the start of his life without leukemia. He's gone through so much, and this is a record of his journey.

Sunday, February 27, 2011

Neither of us slept well last night because of his coughing, which sounds like nasty bronchitis.  His lungs are still clear though, which is good.  However, he still has a fever that fluctuates between 39.1 and 40 (104).  Swallowing Tylenol is out of the question. He has ulcer-like sores in his throat that cause him far too much pain to do that.  In fact, any time he swallows, I can tell he's in pain.  His mouth is in horrible condition as well, which doesn't come close to adequately describing how it looks, but I know he is bleeding from the mouth. So far there is no improvement either.  

The darker areas on his lips is where he has either bled or
blood has dried there.  At this point, his lips are very raw
looking.

His bottom lip is severely swollen and distended, which has happened so quickly.  The skin has become raw in places from drool and dried out and cracked elsewhere.  We are trying to keep it covered with whatever they say we can use to moisturize it as best we can, but between his breathing out of his mouth, the air in this room being so dry, and his fever, the moisture is literally leaving him. 

And if you are squeamish, I apologize for this next part, but I want to be very open about what he's experiencing.  The mucous his body is generating is extremely thick and sticky.  As this mucous drains down his throat, it collects the blood he's shedding, which turns it into a clot-like substance.  

While he's asleep, this builds up in his stomach, making him nauseous when he wakes up.  He isn't vomiting a lot at all, but he does start coughing until he's red in the face, which I know has to be so painful for him.  However, he is managing to bring some of the "gunk" up, and it's vile.  There is no smell, not to me at least, but what he coughs up is completely bloody and some of it actually clotted.

I took a picture of what he spit out, but turned it mostly black and white.  This stuff pulls almost like taffy. That's the best comparison I can think of. 

This is his "spit" bowl.  The white wrinkled
stuff is tissue and the dark stuff is bloody
mucous and clotted mucous.

What makes this stuff even worse?  Even though Chase can spit most of it out, it is so sticky and almost elastic-like that it is nearly impossible to clean it all out.  He can't use a toothbrush,  so no one can get in there with any kind of real implement to do any cleaning.  

The blood he is shedding from ulcers within his mouth and the mucous are all drying out on his teeth, tongue, the roof of his mouth, and on his lips.  Everything is so swollen, and the clotting of the blood around his lips and in his mouth appear to be getting worse.

The nurses are doing their best to irrigate his mouth to help get rid of the clots, but they can't be too aggressive with him because he's already in pain and they certainly don't want to cause more bleeding.  Normally, you get platelets when yours fall to around 10, but they raised his transfusion threshold to 20 because he is losing so much blood.   Today, they gave him 2 units of blood and since yesterday, he's also had 2 units of platelets.  

He's on at least four or five antibiotics and anti-fungal meds to combat whatever it is that is making him feverish. He did test positive for an infection in his blue lumen. He has a central line coming out of his chest that splits into two lumens; one blue and one yellow.  They're unsure yet what kind of infection is in there, but with everything he is receiving, they're confident it will knock it out. 

Talking is a real issue at this point.  It hurts him, and when he does attempt to, he's very difficult to understand.  I hate asking him to repeat things because it only frustrates him, so I'm trying to encourage pointing or only using one or two words instead of asking a complete sentence.

He is still attempting to do his laps.  We broke them up into two parts today, and that seemed to help.  He also voluntarily got into the bath tonight. I was pleasantly surprised.  And I am completely exhausted.  I hope he has a better night this evening so we can both get some needed sleep.  He may sleep over 20 hours during the entire day, but it's those hours he gets at night that are the most restful. 

And we are still taking things one day at time.  Thank you for the continued prayers!

God Bless.