Our superhero!

Our superhero!
Our superhero!

Wednesday, February 26, 2014

Learning to adjust to being home

While I am grateful beyond words to be home, it has taken quite the adjustment to get into the swing of things.  Then just when you feel like you are on top of it, meds change, or we have a busy couple of days with "normal" life, and get behind on cleaning.  I would rather clean my house 1000 times over just to be home though.

Right now, Ethan's list of medicine is large.  He has Septra (antibiotic), ursodiol (to protect his liver), omeprozole (to protect his stomach), fluconazole (anti-fungal), acyclovir (anti-viral), cyclosporine (to help prevent graft vs host disease), leucovorin (to help restore healthy cells), megestrol (appetite stimulant), benadryl, zofran, lorazepam, and promethazine (all as needed for nausea), and oxycodone (as needed for pain).

It takes us about 3 hours in the morning to get all of his medication down, and we are down to about 1 hour at night (HOORAY)!

Also, he has been doing IV nutrition at night.  It runs for 12 hours each night.  It is over a liter that runs into him, so he has been up every 2-3 hours each night going to the bathroom.  He is unable to get there by himself because he is hooked up to the IV, and his energy level isn't super high.  So we have been up with him.  It is almost like having a newborn!

Jerin has been our little nurse in training, and has really like to be a part of all of Ethan's care.  He can hook up the IV bag all by himself (with supervision, of course)!  

Ethan got taken off of IV nutrition yesterday.  Last night was his last night of doing it.  Now we do these little magnesium balls for only 1 hour each night.  I am hoping that now we will be able to get some sleep without so many potty breaks in the night!

This is Ethan's central line.  This is where he gets all of his IV treatments.  This is also where they administered chemo, do blood transfusions, blood draws, etc.  Almost everything can be done through his central line.  He has had this since July.  Before that, he had a port that sat underneath his skin which they would access with a needle when they needed to use it.  They needed this broviac for his bone marrow transplant because it has 2 lumens, and he had so many things going into his line at once that he needed the extra lumen.

This is showing the 2 lumens.

We have to flush Ethan's line with Saline and heplock them to keep them from clogging twice a day.  We also do dressing changes on the central line once a week, and change the claves on the end once a week.

This is daddy flushing his line for the night.

 Ethan's worst medicine to take is Cyclosporine, which helps prevent graft vs host disease.  It is the hardest medicine for Ethan to take.  This is Merrill trying to give it to him, but Ethan is "hiding".  Poor kid!

On top of Ethan's care, we have a lot of cleaning to do.  Every day, we have to dust, vacuum, empty garbages, and clean the sinks and counters in all of the bathrooms and the kitchen.  Every week, we basically have to wipe down everything from ceiling to floor (ceiling, walls, ceiling fans, on top of cupboards, on top of the fridge, heater vents, etc - anything that collects dust).  We also have to deep clean everything once a week.  It has been quite the job keeping up with it on top of keeping up with Ethan.  

I know I mention my fabulous friends and family a lot, but they are truly fabulous!  We have a neighbor who is in the process of hiring someone to come in and do the big wipe down once a week for us.  I can't tell you how much this will help.  Sometimes I feel like we are treading water.  Not only do we have the house and Ethan, but we have "regular" life too.  We have 5 other kids to take care of and get places.  Merrill works. Ethan is going into clinic once a week, my dad is doing his own treatments for prostate cancer that we have been trying to be supportive of.  This will just be such a HUGE help!  I am TRULY, TRULY blessed!

As for what the future holds, they are already weaning Ethan from his graft vs host medicine.  This is a new protocol for sibling donations to start it this early.  We will continue to go into clinic once a week.  Once Ethan reaches his 100 days on April 23rd (yes, we have counted and have it marked on our calendars), he will have a little more freedom, and medicines will start to drop slowly one by one.  Some he will have to be on for about a year, while others are not as long.  We still have a long road ahead of us, but as I said above, we have been truly blessed, and I have never felt like our family has had to do this alone.  This has been a HUGE group effort.  I am so grateful for that!

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