Best Thing, Worst Thing

Every night at dinner we play a game with our boys called: Best Thing, Worst Thing. Each of us takes a turn telling the very best of what happened that day and the very worst. I love this game because it teaches my boys that we can talk about anything as a family. I also love this game because on many days, my boys joyfully report: There was no worst thing today!

Here's the breakdown of Best Things/Worst Things from another day in the step-down lounge...

Best Things:

• McKay took two wagon rides today and attempted a few shaky steps--the first he's taken since last Friday. He's pretty weak and wobbly for reasons that range from not eating for a week, to healing, and to being basically bed bound until yesterday. He did great!
  

We are not allowed to leave the cardiac floor for our little outings which means we have to make lots of circles. But there is a nice view from a huge window that looks out onto the busy street below. McKay watched the cars go by for a good 15 minutes there today.

• I ran in, out, around and through the Penn campus today. I sweat and felt much more optimistic for it. I also felt completely satisfied at not having to be a college freshman again--oy!
  
• I was also not a brat today. (Complete self assessment, so take it for what it's worth.)

Worst Things:

McKay had a very restless night. He was in a lot of pain and could not get comfortable enough to fall asleep. The nurses and I have been telling the IV and Cardio teams for two days that the IV in his right hand was going bad and his chest tube insertion site was becoming a concern. Today it all came to a head.

After screaming through the initiation of another course of IV meds, Mac's IV site started to bleed. Finally! We were actually happy about this because it meant the IV team had to change it. It seems Mac's audible protests of pain were not enough for them who kept telling us the IV was fine. But when it bleeds, they have to change it. So that meant his carefully wrapped and protected club of an IV-equipped hand switched from right to left where another IV has now been inserted.

Now it was time for some answers on the chest tube. CT surgery came by and said the site was irritated, but fine.

An hour later I was laying in bed with my guy and happened to notice blood soaking through his shirt. When I lifted it up, his belly was a mess.

A CT surgical assistant came in immediately to assess the situation. You see, chest tubes are surgically placed through an incision made in the skin of the stomach. The tube runs under the rib cage into the chest cavity where it allows all excess fluid an escape route. It is surgically inserted and sutured in. Pretty serious stuff. The problem is that when a chest tube gets blocked by a clot or other obstruction, the fluid tries to find the path of least resistance out of the body--aka the hole in the skin of McKay's stomach where the chest tube was inserted--and begins to escape.

It all meant a Class A mess on our hands and a warning that the hole they created for McKay's chest tube is now so large and the skin so disintegrated, they will be unable to stitch it together once they remove the tube. McKay will likely go home with a large open wound which will simply have to heal from the inside out. Gross.

Furthermore, if McKay does not stop draining in the next day or two they will have to take him back into surgery, cut another hole and insert a fresh chest tube. Please no.

Needless to say the entire thing is literally and figuratively a bloody mess. McKay was shaking and purple from holding his breath as the pain of them trying to secure the site today was simply too much for him, even with the help of a little Oxycodone. I truly hope he will forgive me for the dozens of times I've had to hold his tiny little fists down and whisper, "It will be okay," when clearly nothing is okay in the moment. I hate lying.

The entire fiasco wiped little man out for the next several hours. And like the angel he is, he curled up like a cherub and fell asleep. Hopefully to dream of better days to come.

Overall, to say this kid is a trooper would be selling him short. I have honestly never known ANYONE tougher or more splendid in forgiveness and unconditional love. And I think most children come equipped with the same trust and love I see in my McKay. Somewhere between where he is and where life ends, many lose that. So many become suspicious and distrustful and sometimes downright unkind. I worry that this nightmare of an experience for McKay will hasten that process--making him protective, concerned and guarded when trust is what's needed to usher in possibility. I pray it won't.

For now, we're hoping for a rapid decrease in Mac's still considerable chest tube fluid. No more fluid, no tube. No tube, no hospital. No hospital, HOME. If you're already on your knees, we'd appreciate a prayer in that general direction.

Much love--xoxo.