RECOVERY + DAY 3/4/5 (PART II)

The first day (Friday) in recovery seemed to go well and was mostly about finding the right balance of pain medication and trying to get him to eat a little food and drink some fluids and settle in for the night. He had three IVs, one in his foot and two in his right hand and an arterial line in each hand as well. On Friday night he got a dose of valium to one of the hand IVs and it caused a lot of pain. The same thing happened the next morning. Valium stings when going in anyway, so I think the pain was overlooked. 

The day nurse was unable to flush the IV or get a blood return for lab work and his heart rate had been elevated all day, increasing into the 100s and staying there, bouncing between 100-115 and jumping up to 120s. She called the IV team to see if they could see what was going on and they noticed right away that his right hand was super swollen and that there had been an IV infiltration, where the fluids stop going into the vein and start collecting in the tissue. He had been getting other pain meds into this line as well so it was definitely concerning. He also started to get an elevated temperature. None of these are great signs but it isn't uncommon for tachychardia (resting heart rate over 100) to occur post-surgery. They wanted to rule out any other issues so Eli got a chest x-ray (lungs look great), and an EKG (heart looks great) and a blood & urine culture and some other labs. The pediatric doctor made a visit and assessed him and said other than the heart rate and temperature, he looked and sounded really good. We finally got some sleep a little after 1am and had a pretty restful night.

Sunday morning, PT came by again with a walker and a goal to get Eli to stand up out of bed and maybe take a step. Other than briefly sitting on the edge of the bed yesterday, he has not been up at all. This turned out to be too ambitious of an ask because after the first step, he got light-headed and I had to hold him up while he briefly passed out until we got him seated again. He definitely should have eased into this a little more slowly.

He can't bear any weight other than a toe touch for six weeks and then we will do x-rays again to see how it is healing. He will resume chemo in 10 days and that will slow down bone growth and healing. After the six weeks he might be able to bear a little more weight and begin more PT.

The Ronald McDonald House lounges are on a three different floors and provide different amenities. I got lucky and scored an unoccupied washer and got a load of laundry done. It is really such a nice added service. I will forever round up at McDonalds. The main lounge also provides meals twice a day that are prepared by volunteers for families with children receiving treatment at the hospital. The cafeteria and room service is pretty good as well and Eli has actually been eating what we order for him.

Late Sunday the IV in his left hand started to fail, but his night nurse caught it early. The IV team was called up again and started a new one in his forearm and removed the one from his foot. He got another EKG and everything checked out with his heart, despite his consistent elevated heart rate. He woke up to the sweetest card left by his night nurse with a Door Dash gift card. She wrote the most thoughtful and encouraging words to Eli and it made both of us overcome with emotion. He was hungry for food Monday morning and has had an insatiable appetite for fruit, specifically strawberries and pineapples. 

Dr. G made a visit and we were happy to see him. I will forever be grateful to this man and his surgical abilities and kind heart.

Dr. G. showed us Eli's x-ray. This is the compress mechanism that has replaced the femur/knee.

And here is the x-ray of Eli's hardware:

He got to keep his kneecap, which is over the metal.

Then there is a tibial stem that is fitted down into the center of the medullary cavity in his tibia to anchor it in place.

The tibial stem isn't 100% anchored in place and will allow a little swivel motion.

Richard is flying back to Boise tonight. Bella has been holding down the fort like the boss babe she is. I think Eli and I should hopefully get out of here by Wednesday. We are decreasing his dose of ketamine and will disconnect the IV catheter with the lidocaine tomorrow. 

This journey is not over and could be full of twists and turns, but there is nobody that I would rather navigate this bumpy road with other than our circle both big and small. Eli has had such an impact on everyone that he has come into contact with. He is such a strong fighter and his tenacity, resilience and determination shines through as he overcomes every obstacle, no matter how great. He has risen up time and time again and if he can't do something the first time, he challenges himself to try again or stand for a little longer, fight a little harder. He expresses his thanks multiple times a day for everything that he needs help with. He talks about how he wants to be a dad someday and all of the people that he wants with him when he gets to ring the bell. Sometimes this cancer doesn't feel real. Most of the time it doesn't feel real that it has happened to us. I am so proud of Eli everyday and grateful that I get to raise my hero.