Wednesday, March 7, 2012

Seeing the Light???

There is light. . . I'm home and yet I am seeing the light through the calls, texts and emails from Peter and the team.  I see the pictures of Tray and the facetime calls of a young boy who is more vibrant, talkative and expressive than the entire time I was there.  How refreshing, reassuring and elating.  I am still worried.  But, it's a controlled worried now. 

Tray is now in PT and OT and is walking more daily.  He fatigues remarkably easy, but is far more willing to push through the fatigue than he was previously.  He is also trying to attend school for 2 hours daily.  It's been a struggle to get all of the time in due to various factors.  The other day he had pain and needed pain meds, this made him fall asleep.  Then next day he began sneezing violently and was shivering. . . worried about fever, the teacher cancelled the rest of the session.  Then today, Peter dropped him off, went for a walk, only to get a call that Trayvon had vomited in the classroom.  His work has arrived from Liverpool Middle School.  He now has homework daily so he has work to do even when he misses school, poor Tray.  :-)

Calories, fever, weight, are all things we're still monitoring.  He is taking more calories daily, mostly in the form of Ensure Plus drinks.  Pete has been successful in getting him to take a slice or two of pizza, a hamburger, a chicken wrap, etc.  They stay with him sometimes, other times not.  Overall, progress.  We'll monitor for a bit longer and if we can't make MORE progress, then we'll revisit the need for a feeding tube temporarily to supplement what he is taking. 

His fevers have continued.  His labs show some sort of problem.  His platelets are in the millions.  Yes, that's very high.  Normal high is 450,000.  He is 1,625,000.  This is a sign of infection.  His CRP and ESR, both are inflammatory markers, are very high and very slow to fall.  For those who know what the numbers mean, his CRP was as high as 200, and today was 81, still too high.  Normal is less than 10.  His ESR was 80 and then jumped to 115.  Infectious Disease was called in.  They started his Vancomycin back up.  No one knows what is the source but agree there is a source.  So, he'll stay on the antibiotics for a full 7 days.  Then we'll wait. . .and see what happens.

But, despite these little things.  He is happier.  He is funnier, He is stronger.  He is my old Trayvon. 

It's remarkably hard to not be there, to watch over all aspects of his care.  To monitor his meds, do his showers, talk to the doctors, be his mom. . . but, daddy is doing an awesome job which has allowed me to focus on my babies here.  I've enjoyed getting everyone ready for school, going to the appointments, following routine.  It is good to be home.  I have been tearing things apart and cleaning fanatically.  Whenever there is a child in, about to go in, or just coming out of the hospital, I start nesting.  I find it funny, that the urge to clean is so powerful.  To fight it is useless as much as I want too!  LOL  So, the kitchen cupboards will be reorganized and cleaned, the baseboards are completely scrubbed, the animal cages have never been so clean, the walls are washed, shelves have been purged, and rooms cleared out.  I'm tired, and it's a good tired.

So, I am seeing light.  I am seeing my baby finally emerging from his fragile new cocoon. I can envision the future with Trayvon running free on a soccer field with the wind in his face.  His beautiful, oxygen tube free face.  I'm loving the light. 


  1. Now THIS is a light that we ALL want Travon to run toward..and quickly!!! You are remarkable, and inspire me every day to be a better mother, a better friend, a better human being. Hugs to you and the entire gaggle. Love you all. <3

  2. BEAUTIFUL! You are all in my thoughts each day!

  3. You & Peter very strong & beautiful people!- Such inspiration to all of us. Give Trayvon a hug from me... Gwen