Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Saturday, June 1, 2013

Another week - another worry

Another ERT down, this makes #5.  We continue to see minor improvements with his energy level, his motor skills and even Kim thinks his eyes are clearer (Cornea clouding is common with MPS). 

Last week during his ERT he experienced short episodes of tensing up.  This is a known side effect of the ERT and Nurse Chris stopped his ERT for 15 minutes to let his body settle down and then restarted it.  Everything went well after that.  We also had the surgeon take out the stitches to his Hickman line and it continues to bleed and the surgeon thought it might help to take them out.  Other than that we enjoyed a long weekend with friends at the ranch. 

This week at ERT the same thing occurred and the same protocol followed and it seemed to work again.  This week Peyton went with us to his ERT.  She had fun playing with the toys and I think she enjoyed going to the "Hobstible" with her brother. 

On Friday however a new "complication" occurred.  The area around his G-Tube became swollen and almost looked like the stomach lining was coming out.  I thought Oh no, another ER trip.  After some quick research and a call to my friend Nikki who's daughter has G-Tube, I determined it was granulation tissue, a common occurrence of G-Tubes caused by friction and wetness.   I took him to the pediatrician today who cauterized it and now we know to keep it dry and clean with gauze and polysporin. 

We are 3 weeks away from our travels to MN and the 28 day pre-BMT protocol and countdown.  The original Marrow donor had to back out and permanently withdraw from the registry.  I'm not sure if they "found" something during the blood work but if that is the reason, I'd like to think that Coleson may have possibly saved someone else's life.  We are hoping the backup donor consents soon and that there is nothing wrong with him.  We do know he tested positive for a virus that can be treated with anti-viral meds prior to his donation. 

Otherwise we are trying to pack in as much fun prior to our trip.  This week we rode horses, went to the science center, fed ducks at the park and now Peyton and I are getting ready for a swim play date.   

Oh and Peyton continues to crack us up.  This week it was, "If you don't have bones, you will be a puddle" and when I offered her my corn on the cob, "no, mommy I don't want to eat that, it has your germs"  and then she immediately took a drink from my cup!