August 26th

Mom today…
Shawn can now see well enough to even do things like plug his IV pole electric back into the outlets now. Much of the time his eyes are closed due to just being tired and getting so much narcotics, of course. We stay with him 24 hours a day now, as these also make him unsteady and spacy, of course, and he is on “fall precautions”…i.e. we stay close. There’s snow-cone making and drink mixing still going, though!

We are hoping for the steroids to start soon, Doc yesterday said she was pleased that Shawn’s aspergillous pneumonia was not getting worse (though he sounds junkier each day) the brand new antibiotic used to fight the Vancomycin- resistant staph infection are working well, his legs and feet REALLY look better and so she says he’s as good as can be until he gets some white blood cells working to help heal him. Mucositis continues to be a real problem…drinking and swallowing when you have no lining to the mouth and throat is so painful; how we pray for healing here! His liver continues to be a real issue, with his bilirubin of 14.2 yesterday (normal = <2). Steroids would be a huge help, so we’ll keep you posted on any developments.

Shawn continues to amaze and impress us with his courage to do keep doing whatever he needs to do to fight, even drinking ensure. It’s so needed but every swallow is agony and the benefits of having something in the GI tract are mighty hard-earned. We HATE to even ask him to have an Ensure nutritional supplement…makes you feel like you are torturing the guy, but he gets down a couple a day. Such courage! He still makes his little jokes and teases us.

Have you seen the satirical Rob Rainer movie “The Princess Bride”? (A goodie, if you haven’t seen it, pop it on your netflix lists.) Any, as Wikipedia says better than I can: [The three interesting criminals that have captured Princess Buttercup and tried (in many creative ways) to kill the man in black who is trying to rescue Buttercup] “reach the Cliffs of Insanity and begin scaling it with Fezzik’s strength pulling all four of them up on a single rope. Their pursuer, a man in black, catches up and climbs after them. When the bandits reach the top they cut the rope, expecting the man in black to fall and die, but he manages to grab onto the face of the cliff in time. When the man in black reaches the top, he wins a swordfight with Inigo, beats Fezzik with his strength and speed, and outsmarts and poisons the clever Vizzini.” I remember them watching heroic Westley (the man in black) climbing the cliff, battered, bloody but grimly determined, and Inigo says in astonishment “He just KEEPS on coming!” That’s Shawn these days! He’d snort and make a disparaging comment if he knew I’d said this, but he won’t read it (we summarize people’s posts to him these days) so I can say…he’s my hero.

We’re headed up to the hospital, Kris was there last night, so second shift is now coming in. He got to have Deb as his nurse last night (she’s been on a special assignment for months now so hasn’t been his nurse), so that was great…although all the nurses, CNA’s and facilities people on his floor are WONDERFUL and he cares for them and they for him. You could pay people to provide the outstanding care they give Shawn…but you could never pay people for the warm, funny caring that pours from these folks who help him on Rhoads 7…they are just amazing, amazing people and we are deeply grateful to them!

3 Responses to “August 26th”

  1. Leigh Says:

    you don’t have to tell him this…. but he’s my hero too! I’m so glad that the legs are doing better and such. I hope that each day he continues to improive, only if it’s just a tad. Thanks for the great update Aunt Kath. Love you guys. Keep it up Shawn!

  2. Jodie, Mum and Al Says:

    I am with Leigh! We all love you so much! Jodie

  3. Stann and Helen Says:

    Hi Pat and Kathy, Kris & Shannon,

    Just wanted to let you know that we are watching this journal now (belatedly) and we are very very happy to hear that Shawn is a little bit better. We are very impressed by all of you - and learning a lot from your collective courage and spirit. What an incredible family you are! Thanks for letting us keep in touch with you this way.

    Helen and Stann