Day 235 - Hanging in there..

It's amazing how complacent you become when everything is going good.  I mean, I know we are dealing with cancer treatment and all, but Ryan looked good and felt good and we complained about being bored.  And then, well, things suddenly aren't going good anymore... and I kinda lose it.  But that's all just the emotional stuff (you know, the stuff I try so hard to pretend doesn't exist?)

On the less than emotional side, Ryan is fighting 4 different things right now.  In no particular order:

1.  Bacterial infection in his blood stream.  Ryan tested positive for Klebsiella (I hate being right), which is a gut bug.  The doctors agree that this is probably because he has no immune system, and it 'translocates' from his intestines into his blood stream.  Not shocking, surprising or even unique.  He's had this bug so many times I've lost count.  The doctors have him on a great cocktail of antibiotics and it's totally under control.

2.  Influenza A.  Again, he has no immune system and he probably picked this up either during Thanksgiving out here, or at any one of the clinic visits in the last 2 weeks.  Not surprising, but still a problem.  They've given him Tamiflu, and we just have to ride it out.  As some of you have had the unfortunate experience, the flu can take weeks to recover, and that's with a normal immune system.  But, as he's Ryan, he's handling it like a champ.  He LOVES the 'nasal wash' with the suction and saline, and he's keeping his nasal passages damp and lovely.  (see the picture above) He had a bit of a bloody nose last night, but seems to be doing fine.

3.  Low blood counts (including platelets and albumin) and no immune system.  The platelets help you to clot correctly.  The albumin helps keep fluid where it belongs.  In Ryan's case, the low albumin is contributing to has massive 'puffiness' with what we call '3rd spacing'... It's where the fluid moves out of the blood stream and just generally in the body, causing swelling.  The doctors are giving him extra platelets and RBC's today, and we'll see how he feels tomorrow.  In addition, his ANC is down to 0, meaning that he has nothing to fight any infections or viruses.

4.  Non-obstructive blood clot in his jugular vein.  I hesitate to mention this one, as it's terrifying, but we are dealing with it. Ryan has a central line that is inserted just above his heart.  Here is a diagram that explains where it sits inside his body.  We noticed that the swelling was mostly in his neck and face, and the doctors decided to do an ultrasound last night to make sure there wasn't any obstructions.  Around midnight, Patrick called to let me know that the doctors found a small blood clot in his vein, next to his line (next to his jugular vein).  The clot is not obstructive (meaning that there is still blood flow), which is really good.  However, as it is a clot, there is always a risk of it breaking off from the vein and traveling to bad places, like the heart or the brain.  Therefore, we'd really like it to go away.  The doctors have doubled his medication that 'breaks down clots', which should resolve the issue.  In fact, they are not all that concerned about it right now, as it's not causing decreased blood flow, and he seems to be doing just fine.  They think that it has only been there for a few weeks at most, and we caught it really early.  However, it could be contributing to his swelling neck and face, which kinda makes sense.  However, blood clots freak me out.  After his transplant, we had a blood clot that killed off 1/2 of his intestine.  I really don't like them.

So, the good news is that the doctors are taking very good care of him.  All of the issues that we are dealing with can be fixed with medications, transfusions, antibiotics, and time.  He rested most of the day, and was feeling pretty good this evening.  He wanted to watch Despicable Me 3 with Patrick, so they had a movie night.  And the nurses said that he was just wonderful during the day.

(Back on the emotional thing..) I'm trying to stay positive, but I sometimes find my resolve cracking.  It's not that I don't think things will work out... I know they will.  But I hate that I can't be there to help and hold his hand.  I know that I'm needed here and I know that Patrick can handle things out there.  But it still sucks.

For those who have suffered through something like this, you know that you just have to keep going.  It's not like we have a choice in the matter.  And, as my mother always says, this too shall pass.

Thank you all for keeping us in your prayers and good thoughts!!