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.

Monday, April 29, 2013

Happy to be Home - even if it is only temporary.

So sorry to not have posted until now but I have not found a chance to do so since Coleson got out of surgery on Friday.  All the surgeries went well with the exception that the
anesthesiologist did have a difficult time getting a tube down his very narrow airway.  Hopefully this will start to open up after the BMT and ERT. 

We got called back to the recovery room right when they said we would at 2:20pm.  This was after all 6 procedures performed by various Drs.  Amazing their timing accuracy.  He was only happy being in mommy's arms for the rest of the night but did feel well enough to eat some macaroni and cheese, banana and a dinner roll.  He did spike a fever and his blood pressure jumped up so they gave him some antibiotic just in case he was starting an infection.

Saturday was ERT day, Hooray!  Doesn't seem like something to celebrate but it means he is starting to receive the missing enzyme.  It was more cuddling for most of the day but he did have a restful sleep during most of the 4 hr ERT transfusion. 

Meanwhile Paul and I got lessons in how to care for his Hickman port and G-tube.  Since the Hickman goes straight to his heart, we have to be super careful no bacteria or infection gets in the incision area or port.  So we have to flush the port daily and change the dressing every 7 days.  We also have to ensure he doesn't get it wet or pull it out.  I did the first flush and dressing change prior to leaving the hospital.  Paul walked me through the checklist and made sure I did not touch any unsterilzed surface.  If there is any risk of touching an unsanitzed surface (even accidentally touching my arm) we have to throw away the gloves and get fresh supplies.  We actually had to change the dressing again when we got home on Sunday (along with the daily flushing of the port) as the dressing seemed to be coming off.  We were a bit surprised that the contents of the dressing kit weren't exactly the same as the hospitals.  Tomorrow the local home health nurse will be coming over to train us again the kit from the local pharmacy.

Coleson was pretty lathargic sunday morning but seemed to brighten up when we got home.  He was smiley, running around, playing with all his toys and his big sister.  He was definately happy to be home as we all were.   The hospital sent us home with "patient" sock monkeys that have g-tubes and hickman ports so that Peyton and Coleson could play Dr. with them.  Peyton didn't seem too upset to see brother's owies but was a little disappointed that she couldn't help us flush his port or change his dressings.   She is good big sister.

Today was back to "normal" under the new definition.  Back to work, normal schedules, routine etc.  Of course our new normal includes the nightly port flushes, daily calls with drs./hospitals/insurance etc.  We have our first local ERT at Phoenix Children's this friday. 

Also, first round pass at finding potential donors is promising.  3 8for8 chromosone bone marrow donors (adults) were found and a few 5of6 chromosone cord blood donors as well.  Further analysis, testing etc. will be needed to identify which source will be used.  There are risks and benefits for each type. 

We are starting to prepare for the big trip back to Minnesota probably mid-June.  Trying to determine logistics/schedules for all of us.  We appreciate the offers of help from our Minnesota based friends and colleagues.  We will definately let you know what you can do to help.  If it's visiting with us, bringing us dinner at the hospital, sitting with Coleson while we take a shower, playing with Peyton or even borrowing some children's gear, etc.  It is a long time to be away from the comforts of home.