Progress!

The last 2 days have been great for Tyler.  He is able to play and walk on his own.  He can walk up and down the stairs holding the rail for support and he can get up off the ground without help most of the time.  It is amazing the progress he has made, and I am reminded of one large contributor to this progress at medicine time.  I have kept Tyler on a pretty strict schedule of Tylenol, Oxycodone, and Ibuprofen.  The Tylenol and Oxy are taken at the same time because they work best together, and the Ibuprofen at least 30 minutes before or after.

We knew it would be a challenge to keep track of the time and what medications we were giving, so we put a whiteboard in the kitchen and write down the time and medication we give Tyler.  It is a lifesaver!

 Tyler with his big balloons from the hospital. 

Tyler flying his 747 Air Force One that Papa gave him in the hospital.

When we were discharged from the hospital Tyler was taking the Tylenol & Oxy every 4 hours.  The doctors told us when he was at one week post-op we could stretch the time between doses to 6 hours, then 8 hours.  On Tuesday he was doing well, so I stretched the time to 6 hours and he was fine.  His activity did not seem to slow down and he was not in pain.  (At least he did not admit to any except for when it was time for another dose, he doesn't want anything to slow him down and get in the way of his play time!)  I was busy keeping him entertained, safe and on schedule with his medicine. Tuesday and Wednesday passed with progress and without major pain, so I thought I could stretch the medicine time again to every 8 hours on Thursday. 
I was wrong.
Tyler played and his pain was gone for the first 6 hours, but once we got to 6 hours & 30 minutes, he was lying on the couch and wanted nothing more than to stay there.  That was a big reality check for me.  I have been amazed at his progress and I guess I had been attributing most of it to the fact that he is an active and healthy kid who is just healing quickly.  I had not been giving the medication the credit it deserved for the role it is playing in his recovery.  I am sure that Tyler's personality and active nature DO have a lot to do with his recovery, but I also understand that he would not be feeling good enough to be himself without the regular doses of medicine.  Later in the day on Thursday, as I was 2 hours into building a 3 story Lego house for him, he asked for pillows and a blanket and lay down on the floor next to me.  Kaitlyn was napping on the couch, and although we had just passed the 6 hour medicine deadline, he insisted he was not in pain.  He also insisted that I keep building.  So that is just what I did, and I thought Tyler was just sleepy and wanted to nap, but 45 minutes later he was still awake.  He was just lying quietly and would occasionally ask me if I was done yet.  I assured him that I would keep working on it and he could just take his nap, and to my surprise he answered that he wasn't sleepy.  His back just hurt and it only felt better when he was lying down. 
I felt horrible!  Here he was lying there hurting and had just not wanted to admit it!  Needless to say he got his dose immediately and quickly became more active again. 
After what happened yesterday I was hesitant to try the 8 hour medicine time schedule again.  But I decided to give it a try and just watch him very closely for the signs he gave yesterday of pain.  What a difference a day can make!  We had success!  He really is a vibrant boy and his desire to get back to life as he lived it before having the VEPTR implant is strong. 
Tomorrow will be the biggest challenge.  We are at the end of the bottle of Oxycodone with no refills.   I will hopefully give his last dose tonight and then we will hopefully be able to manage his pain with Tylenol and Ibuprofen alone.  I know I can his doctor and get more if I need to, but the plan is to get him off of this strong painkiller as soon as possible.  I am praying that he will make this transition easily!  I certainly do not want him to have to lay on the couch because it is the only comfortable position.  I guess we will see...cross your fingers!