Adventures and Reflections at Home

We have been home for 4.5 whole days now. That’s officially half a day less than we spent in the hospital. We were excited to take Pierson home but I think we also had just a teensy-eensy bit of fear. We was still pretty fragile when we took him home but the good new is we haven’t broken him!

I set up a bed for Pierson and myself on the couch – here’s why. We’re afraid to let him sleep in his own bed for two reasons: 1 – We’re afraid he’ll roll of the bed and bust open his incision 2 -- He doesn’t have all of his dexterity back yet. If he rolls over he can’t always get back up. So if I put him on the inside of the couch and I sleep on the outside (I’ve pulled our oversized ottoman next to the couch) then he can’t roll off and if he gets stuck when he rolls over then I can help him out. The night before last he rolled over on his stomach and woke up panicked yelled out "How am I to get up? How am I to get up?!?!" I rolled him back over and he went to sleep. Problem solved. I’m really glad I was right there. This will probably ruin any good sleeping habits we had but truly, that’s not really at the top of my "things to fret over" list.

You look at him and think he’s just a normal kid but the truth of what actually happened is still fresh in our minds. He isn’t 100% back to normal but he’s getting there. He will play for a while then rest for a while, play for a while, rest for a while. He is napping like a champ! He mostly wants to play with his garbage trucks and read books and watch movies. We made some homemade playdough yesterday and that has been a source of great fun. He has had 2 friends over for brief visits and it has been good for him, with peers around he lets loose a little bit more. Every day we can see his energy level increasing. We know God is active and healing him. We finally convinced him to let us take his pressure dressings off of his and chest but he was absolutely not willing to let us take the one off of his wrist. I’m sure they were both sore… those spots were where lines were inserted directly in to his heart and major artery.

Let me tell you how I had to get the pressure dressing off of his wrist. That thing was starting to come loose but he did not want it off. He convinced us to put a piece of tape on it Sunday when it started to come loose. So, last night/this morning from 3:15am – 4:45am I was up hovering over him with a pair of rounded tip scissors (I was thinking safety here people) and every time he would shift and his arm would come up I would take a few snips of the tape. Then he would feel me messing with his arm and tuck it away. Finally I snipped the last bit of tape. VICTORY! I stuffed it waaaaaaaaaay down in the bottom of the trash can so he wouldn’t see it. Thankfully he hasn’t asked about where it went. Whew!!!

He will not however let us take off the oxygen stickers off of his face and has refused to let us take off his hospital and allergy bracelets off. The oxygen stickers have got to go and our goal is to wash those off in the bath tub tonight. We’re fairly certain this will result in a melt down but it has to be done. I asked him why he didn’t want us to take off his hospital bracelets and he told us it was because he loved them and they had his name on them. Eventually he’ll let us take off the bracelets… so whatever.

The reality of what has happened and what could have happened is heavy on our hearts this week. Everyone we came across in the hospital – nurses, techs, doctors remarked that Dr. Adams "made a really good catch." We know this. If a Coarctation of the Aorta is left untreated it can result in stroke, a ruptured aorta, premature coronary artery disease, organ failure, and cerebral aneurysm. You die from those things. We would have lost Pierson. It is also very real that we could have lost Pierson in surgery or during recovery. God put is in capable hands and was over P’s surgery and is over his recovery.

I’m working on a bound book for Pierson to have that will be on his level about how God has taken care of him. His heart surgery will not be what defines him --- but it is an important part of his story and is an example of God’s plan and provision for his life. He needs to know that God provided him with very special doctors who do God’s work with their talents. Pierson needs to know that his life is not futile or a coincidence but ordained, planned and purposeful. He needs to know that so many people have interceded in prayers on his behalf. . God has a lot of work to do in this little boy and a lot He has already done.

Please keep praying for Pierson’s perfect recovery. Pray for our doctor’s appointment next week. Pray that the echo is beautiful and completely void of scarring or defect. Pray his EKG is perfect. Pray that Pierson continues to be a good little patient and is still and cooperative during these appointments.

Working on his home made playdough

working hard on his playdough construction project