Praise God, it’s great to be home.  The place is a mess, but it’s our mess, and it’s fantastic.

Because yesterday was our first official day back home, it was also our first official day flushing and “hep-locking” Jeremy’s central line.  There are two tubes (medical staff call them lumens), both capped at the ends – one red and one white.  It’s worth noting that the red is wider than the white.  We were told to always flush in the same order so we remember to do them both.  We chose to go the alphabetical route – first the red, then the white.  Both lumens get flushed with saline, then get “hep-locked” with heparin – an anticoagulant to prevent the line from clotting.

I (Anthony) had the honor of doing it the first time.  The red one flushed fine, but the white one was very resistant.  After trying once or twice without success, we concluded that it must be clotted and we decided to call the 24 hour number we were given when we were discharged.  The nurse that we spoke to said it could be the cap and we can try changing it, or it could actually be clotted, in which case, we would have to be admitted before they could administer the clot-breaking agent, TPA.  We weren’t confident in our cap changing ability so we decided to bring him back to the floor to get it looked at.  Our first day back home and we were in the car again on the way to the hospital.  We got to the hospital and a nurse helped us change the cap and thank the Lord, it flushed just fine.  We really didn’t want to be readmitted our first day out of the hospital.

Jeremy was a champ through all of it.  We told him we were going to go back to the hospital and his immediate response was a calm “No poking.”  He said this a few times on the way there and we assured him with a firm “Nope, no poking.  Just looking.”  Special thanks to Alice’s parents and Jenny (Yee-Mah) for helping us get to the hospital.

We also gave Jeremy a bath last night.  A bath isn’t something I would normally consider writing about, but it was a slightly more challenging task because we had to cover the central line with a waterproof guard.  It’s essentially a giant clear sticker.  Jeremy hates stickers anywhere on his body, mostly because it hurts when it gets pulled off.  It typically covers 80% of his torso, with some of it taped on his neck because the central line site is on the upper right side of his chest, so it can be uncomfortable to look down.  It’s a bummer to see him so uncomfortable during his bath because he used to love his baths.  He loved to splash and play with his bath toys, but because we couldn’t fill the water too high in order to protect his line, there wasn’t much splashing he could do.  Still, he made the most of it and it was good to give him a proper bath.

Today was pretty uneventful.  It was great to get back to normal for a bit, as normal as normal can be right now – making breakfast, chasing him around the house, doing laundry, etc.  We flushed his lines without any incident, but still aren’t entirely confident with it.

As for Jeremy, he’s glad to be home.  He was a bit off balance with the running the first night back, but it didn’t keep him from running anyway.  Since then, he’s gotten the feel of it again and he’s been running up a storm chasing us around like a dinosaur.  He’s loss some of his sense of security, though.  If Alice leaves a room for too long, he’ll start missing her and looking for her.  He got used to sitting on Alice for meals, too, so it can be challenging to feed him in his chair at the dining table.  But, even with these small changes in our day-to-day, Jeremy’s disposition is mostly unchanged.  He’s still his playful, energetic, charming self, dropping random “I love you”‘s to us throughout the day.

Something to note: the rash under Jeremy’s dressing still bothers him at night.  We’ve been giving him a small, doctor recommended dose of Benedryl to help with the itching.  The problem is that it makes him drowsy, so we give it to him at night, right before bed.  We feel bad about giving him more medication, but would take that over the alternative (him scratching his dressing, or worse, his line out).

Praise God:

• that we continue to see God work through this situation
• that we get to be home
• that the line maintenance has been manageable, even with that one visit to the hospital
• that Jeremy remains fever free and continues to eat well
• that the rash under Jeremy’s dressing is slowly healing
• that Jeremy remains energetic and playful
• that our families continue to support us by providing meals and cleaning

Please continue to pray:

• that God would continue to use this situation for His glory
• that we would be obedient to God’s plans for this situation
• that we would continue to cast our worries and fears on the Lord
• that God would provide full and complete healing and total health for Jeremy
• that the regenerating bone marrow would produce only good white blood cells, red blood cells, and platelets
• that the bone marrow aspirate on August 9th would show no leukemia cells (that Jeremy would be in remission)
• that we would be diligent in Jeremy’s line care
• that we would not see any more fevers for the duration of Jeremy’s recovery, especially since we are at home and would like to avoid going back to the hospital
• that the additional antibiotics for the fevers would not cause any kidney damage
• that the rash under the dressing on his central line site would heal quickly and we would not need to give him any more Benadryl
• that the brief exposure of the central line site when Jeremy scratched it off in his sleep would not cause any infection
• that the irritation from the previous dressing would continue to subside
• that the current dressing would not cause any allergic reaction
• that God would continue to give Jeremy an extra portion of His strength, so Jeremy would continue being his playful, energetic self.
• for safety and protection for Jeremy, since we are now at home without immediate access to medical assistance
• for wisdom for us in being careful about where we can take him to prevent any of us from getting sick
• that we would continue to be in good health so we can care for Jeremy during the subsequent blocks of treatment