Ups and Downs

It's been a bit of a rollercoaster this last week.  Noah is having increasing swelling and edema especially around his torso.  The swellling is so much that we had to go out and buy him some t-shirts a couple sizes bigger than his regular size - his tummy is so large that his regular pajama tops kept flipping up and leaving his tummy uncovered.  His weight is up 13 pounds since right before he got sick.

He's having increasing pain, especially in these very swollen areas.  Thursday we'd planned to draw quite a few labs to try to get a fix on just where Noah is right now.  This is important because the hospice nurse believes that at least some of this belly swelling is caused by ascites, or pockets of free fluid in the abdomen.  This could be primary or secondary and we needed the labs to tell us which.  If it is secondary (caused by a different main problem), we could be looking at his kidneys and/or liver starting to shut down.  Better news would be that it is primary (it's own problem), but even that isn't great news.  Either way, this fluid is close to the point where it could start to interfere with Noah's lungs and heart by pushing and crowding them.  (Imagine trying to breathe if you were in bed and someone put a 13 lb bowling ball on your stomach!)

At any rate, when the nurse tried to draw labs on Thursday, neither line would return blood.  We could infuse, or push fluids and meds into the lines, but could not draw blood out for labs.  The result was a long and fairly stressful day spent trying to find someone who would treat the lines with TPA or Activase (clot busters).  The Greenville surgical office refused to even look at Noah - their take on it was that since we had the line placed in North Carolina, then we could have the line cared for in North Carolina.  Ridiculous is really far too small a word . . .

Dr. B contacted the pediatric hemetology/oncology clinic (same hospital system, different department) and they agreed to do it, so Friday we headed out to Greenville where a heme/onc nurse was able to clear the clot quickly and easily.  Noah's cardiologist was concerned about all of the swelling, so he had us head to the children's hospital next for an echocardiogram.  We wrapped up the day with a trip to Build A Bear for Noah.

We don't have the results of the echo yet and the nurse will be doing the labs tomorrow.  Over the weekend, he's been dealing with increasing pain and the bolus on his pain pump was increased today.   I think we've got a handle on the pain right now as he's been sleeping for a few hours.

In happier news, we've prayerfully decided to move ahead on a long-time dream . . . creating a charitable foundation as a legacy for Noah.  We've spoken with close friends and family, and with Noah of course, and have decided to form a 501 (c) 3 dedicated to offering a variety of tangible and personal supports to children with mito, their parents, and their siblings.  We have a lot of VERY exciting ideas and are happy to be moving ahead.  It's important to us to get things rolling right now while Noah is still able to offer input - and some of our neatest ideas have come right from him!!  We plan to file our articles of incorporation this week then move ahead with the 501 (c) 3 process so that we can start fundraising.  We'll be sure to share full details as things firm up, and in the meantime would ask that all you pray for the Lord's blessing on this project.  If any of you feel led to participate in any way (you don't have to be local!) feel free to email or message me on FB.

I want to extend a huge thank you to those who have taken the time to post FB updates in the comments section.  I feel badly about not posting here as often, but sometimes when things are moving very quickly it is easier just to post a short fast status update on FB.

In all of these ups and downs, we've been so thankful to be children of a God Who never changes and Who loves and cares for us all so much.  I don't know how we could walk this walk without Him.

Blessings,
Kate