Day 4

All in all today was a good day and we saw so much progress!  He was talking a little more, smiling a little more (even giggled a few times) played a little more, ate a very little more and was awake quite a bit more!  It is all baby steps...but baby steps in the right direction.

His chest X-Ray in the morning showed quite a bit of improvement from the day before (yay) and we are praying it stays that way.  Clear lungs are good!

The day started with a visit from his Kaiser cardiologist, Dr. Levy.  I was seriously nervous when we switched to Kaiser, but have been completely impressed so far.  Dr. Levy is amazing and can already tell how much he cares for his patients.  He called to check in the day of surgery, yesterday, and then came by to see him today.  I was blown away.  We loved having Dr. Davis for the past 6 years, but we enter this next chapter so grateful knowing he is still in great hands!

When Joe told Stephen he was going to walk and get coffee he said he wanted a vanilla steamer.  Stephen is on a low fat diet for now (maybe for the next 4-6 weeks) and so he can only have between 30-50 gram of fat today.  But since steamers can be made with non fat milk the nurse gave us the ok...and he was pretty happy about that!

He got his pain meds at 10am...so we made sure to do his first walk shortly after to make it easier!  He got to go on another LEGO mini figure hunt around the cardiac units.  It is not easy.  This chest tubes are no joke.  They are large and long and hurt.  But he pushes through it like a true fighter!

Trying to search for the next figure!  

Pure determination!

Found one!

We came back from the walk and the plan was to give him a "bath" with wipes.  As he was trying to wait patiently for the wipes to get there he was in quite a bit of pain from just walking a large lap and then having to sit up...sitting up hurts...chest tubes hurt.

This boy...this is how he deals with the pain. He doesn’t really cry, he doesn’t complain, he just shuts his eyes and internally copes. Nurses and doctors would always ask “how are you?” And he would reply “good” and just after wince. We learned we needed to read his cues. When he shuts his eyes it hurts (or he’s tired!) And we learned to ask specifically if it hurts, not “how are you?” He is so tough. So you know when he gives a little cry (which I think he has only done once) it’s pretty bad. And he bears all of this so well at just 6 years old! 
As his Mommy it is so hard to watch, yet I am so proud of him. I wish I could take all of this away. I wish I could carry this burden and this pain. But I am grateful to know God has and does carry it with and for him. I know he will use Stephen’s life and story in mighty ways. Immeasurably more is what I have come to expect from God. He takes these pains and these burdens and brings immeasurably more beauty and light to this world and our lives. This child is such a blessing and I am so grateful to be his mom 

❤️

After the bath I accidentally sat on an extra wipe that was on the bed and my pants were all wet...he thought that was hilarious!  He would smile and laugh but then shut his eyes because the laughing hurt!  Still...the smiles were sweet and it was good to hear those little giggles!

The Angels played at 4 and he was all set up ready to watch.  This was the first game he was really able to watch.  He tried before but would fall asleep...but he stayed awake the entire game and this time they WON!!!  He was a pretty funny commentator.  When the replacement center fielder let one go over his head he informed us that he wished Mike Trout was in.  And he got frustrated when the Indians tied it up with no outs.  He is serious about his Angels baseball!

Watching the game with his buddy Mike Trout!

We had to take a small break during the game to take on last walk of the day.  It was a little shorter this time but he got to sort his new LA Kings gown...and find some pretty cool Star Wars mini figures!  His new collection is growing! :)

And lastly, as he was laying in bed he said "I wish I could talk to the kids".  This made me so happy!  Before today he really wasn't saying many words.  He still really isn't saying too much, but he has small conversations with us.  So when he was willing and wanting to talk to the kids we FaceTimed them and this was the reaction from all involved!  So precious!!!  We are all excited to have them come visit tomorrow!!!

Major prayer request is for his rhythm to return to normal.  God is able and let's just keep asking!  

And pray that he would remain strong and healthy as he continues to heal.  Over the next couple of days more lines and wires may be removed and with that always comes risk of infection.  Please continue to pray for what we consider an "uneventful" recovery!  

Lastly, I just want to once again say THANK YOU!  I spent tonight re-reading through every comment on FB and was so encouraged by the sheer number of people praying for Stephen.  I am humbled and SO grateful!!!