Super fast update

Sorry I wasn't able to update while I was gone - I can't update from my phone (grrr - it's an android {google} phone and this is an blogger {google}blog . . . shouldn't they play nicely together??)

We flew home yesterday late in the day.  Thank you for your prayers - I actually slept the entire flight!! Noah had successful surgery for a new dual-lumen central line on Friday and the rest of our time in Winston-Salem was spent working with the pain team getting a solid pain plan in place for Noah.  His pain meds were tweaked and changed and increased CONSIDERABLY.  We left with 2 things we needed.  The first was a plan for going forward from here so Dr. B would know when to increase Noah's meds and how/how much to safely increase.  This is important because we don't have access to the critical-care monitoring that Noah had in the hospital so we needed a balance between agressive enough and safe enough. The second things was a rescue plan which basically means that we now have additional strong doses of IV narcotics in Noah's fridge for us to give if his other pain meds aren't working.  This means that if he's suddenly hurting more, we have the leeway to immediately  hit his pain hard and THEN work on contacting Dr. B to ramp up his regular pain regimen. 

Tomorrow Noah goes to the urologist for what is likely to be a VERY unpleasant appointment.  It is time to have his supra-pubic catheter switched out.  In theory, this shouldn't be a huge deal but Noah screams every time we move that tube at all.  He's OK with us moving his central line and his g-tube, but that catheter seems to really hurt.  He may also have to have some tissue around the tube on his tummy burned off - they burned off a lot when he was in surgery Friday but he needs more.  This is as painful as it sounds.  We'd really appreciate prayers for comfort for him and grace for us.

Thursday he goes to Greenville for a transfusion.  He fell below his transfusion threshold while in W-S but the doctors there wanted his regular hematologists to transfuse him.  We had his labs checked again this morning to be sure he still needed blood and he is still below that threshold.  He hasn't been typed and cross matched for this transfusion yet so it will probably be a loooooong day.

Matthew's birthday is Saturday.  He's having some friends over for fun and lunch, then we are having more friends and family for dinner/cake/presents.  Sunday Hannah's friends that she's in a singing group with are coming over for hot cider and cookies and we'll also have out of town company that day.  Monday we're having friends over to decorate cookies.  We have NO plans after that except to relax until Timothy has his birthday on the 23rd.  :-)

Oh, and Sarah got a hamster and Noah has a loose tooth! 

That pretty much sums it up . . .

Blessings,
Kate