Exhausted, but happy

That first night at home gave us a bit of a wake up call to how things were going to go, but I think we have reintroduced the concept of "flexibility" into our vocabulary.  Actually, everything is going quite well, considering the circumstances.

Anna and I made the trek back to the hospital on Tuesday morning to get her ng-tube replaced, have an x-ray done to make sure its placement was correct, and made it back home in time to have an assessment done with an in-home nurse before Matt headed off to work for the afternoon and Kate went to preschool.  I think the only way I made it through that day is by the grace of God and with coffee ... lots and lots of coffee.

Matt and I related those first 24 hours of having Anna home to the first 24 hours of bringing a first baby home from the hospital.  Your panic sets in when you realize all of the supplies you DON'T actually have, so you go on Amazon.com and order them next-day shipping ... yeah ... that was us on Tuesday morning.  Plus, this kid is on 14 medications, scheduled at various times of the day, and five feeds, and extra fluid feeds.  We thought we were on top of things before we left the hospital by making and printing out a feeding/medication/vitals schedule; we have revised it each and every day, and will probably continue to do so.

But, my personal goal today was to take Kate to preschool with all three kids in the car.  (I wasn't really responsible for any meals today or any other transportation, only that one aspect of the day.)  Well, we made it, and only about 10 minutes late.  I'm sure I could have found Kate a ride, but my stubbornness made me want to do it on my own.

Anyway, in spite of the work load and the exhaustion, it's worth it.  Anna is a joy to have home.  She is also very tired, understandably.  But she is so happy.  Even when she is awake at 2 a.m. asking for her diaper to be changed, she is so joyful and thankful about the whole process.  While Ethan was napping today, I was asking her how she felt about being home.  She said she was happy and excited.  I asked her if she still remembered being able to run with other kids.  She said that she did.  To be honest, I wasn't sure if she could remember the physical sensations anymore of running and jumping.  When I asked if it makes her sad or frustrated anymore to not be able to do those things, she said no.  That gives me mixed feelings.

The best part for me right now is having everyone home all together.  I am savoring being able to kiss all three of our kids whenever I want, how often I want.  I am soaking up watching them all interact with one another and making each other smile.  I love having them all in the same room and having that room not be in a hospital.

The work load has increased.  The next round of appointments have already been made.  (Tomorrow more therapists are coming; Friday another nurse is coming for blood draws; Monday Anna has a long afternoon at the hospital for clinic visits ... everyone wants to see her.)  Her next hospital admission for her next round of chemo is already scheduled.  But for now, Anna is home and we thank God.

Time for prayers

Thanksgiving
Please thank God that Anna is safely home.
Please give thanks for our local pharmacists.
Please thank God for our nurse practitioner who will be our liaison with the hospital from now on.
Please give thanks for the continued support our family is receiving.
Please thank God for family and the rejuvination that it provides to spirits.

Requests
Please pray that God heals broken bodies.
Please ask God to relieve physical suffering.
Please pray for restful sleep.
Please ask God to grant happy memories and joyful moments.