Thursday, July 15, 2010

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.


The Butlers said...

Oh Mindi, I am sorry for the worst things that happened today. Poor little McKay. What a fighter you have on your hands though. I am happy you were able to get out and run to free your mind, if only for a while. We will send prayers and good juju his way. Much love, The Butlers

Jenny said...

I hope tomorrow is a much better day.

Knudsen's said...

Mindi, I know I've commented before, and I realize we don't know each other, but daily, my thoughts always seem to wander to you and that ever-so-sweet little boy. I pray that MacKay will continue to heal and progress quickly. I pray that you and your family will have the strength and courage to continue on this journey. You will be strong, because our Father in heaven picked you to be his mother. I will continue sending prayers your way. Hang in there.

SGiles said...

Wow...I know exactly where you are coming from! My 3-year old had her Fontan done just 2 months ago. We spent 3 weeks in the hospital and I know first hand how hard it can be. Keep faith, and it will pass. Soon enough you'll be wiped out at the end of each day, not from dealing with a cranky child and doctors, but because your little guy will have the energy of 10 children his age!!! I cannot keep up with Hannah most days now, and I look back at those hard three weeks, and I know that they were all worth it.

Saying prayers and sending hugs!!

God Bless,

Lisanne said...

Tomorrow is a new day and hope your night is a restful one!! He is such a sweet heart. Still in our prayers!!

The Simmons Family said...

I hated reading about how much pain he's been in.. poor guy. :( And I know how awful it is to say "It's okay sweetie... everything is going to be okay" when clearly... it's NOT at the moment. We'll be praying that there is NO more fluid and he will not have another tube placed. Not fun. We dealt with that for three weeks post Glenn... yucko.

Prayers and Hugs of sympathy. I keep telling myself that they won't remember this one day. Please say it's true!!

Jenny Lincoln said...

Poor McKay.. praying for that darn tube to be gone so you all can go home and he can recover where I'm sure he wants to be. Go away drainage!!
Heart hugs,

Dianne said...

My heart is so with you all. Please know that prayers go your way all the time. Love,Dianne

Hope's Blog said...

Still continuing our prayers for McKay. I am so sorry for what you had to go through today...what a day is such an understatement. Sending more prayers your way.

Ryan and Hilary said...

We will pray for no drainage, no tube!!
"God will send aid to no one more readily than He will send it to a child—and to the parent of a child."
-Jeffrey R. Holland

Anonymous said...

I can't believe how different each and every one of our worlds are so filled with ups and downs...
Today is my grandson, Ashton's birthday,filled with such joy and fun...
My heart aches for your pain..will
send prayers you way..McKay is so strong...
It's ok to be a brat...we all have our turns..and then we suck it up and move on....Bless you.

Kyle and Alli said...

Oh the description of McKay's chest tube experience just brought tears to my eyes! Poor thing. What a dilema...needing the fluid to drain the first time so you are not back with effusion issues and wanting so badly for the tubes to be out so that you can move onto the next step in the healing process and see him feel so much more comfortable. We will just pray that you can all have today pass quickly with as little pain as possible!

johnsonfamily said...

I wish the little cutie felt as good as he looks! Those cherry red lips look so smoochable.

We love you guys and hope to have you back in Utah soon!


Stefenie said...

Poor guy! Oh this update made me cry! I have been right where you have been holding your child's hand as they are truly suffering and promising them that everything is going to be ok. It does make you feel guilty and you pray that they will forgive you some day.

McKay is so lucky to have such an amazing mommy there to hold his hand through everything. He will forgive you and I am sure he already has. That is the beautiful thing about children how easy they are to forgive.

Saying many, many, many prayers for that site to heal and for things to resolve themselves without the need for another chest tube.