Alex and Maddy

Alex and Maddy

Sunday, December 17, 2017

The Things I See

I look around and could see hospital walls, but I see a room decorated by friends.
I look around and could see a sick little boy, but I see strength and bravery matched by few.
I look around and could see strangers, but I see Doctors and Nurses who love my son.
I look around and could see a hospital, but I see a place filled with hope and love.

The past month and really much of the past years have not gone how I envisioned my life going, but I see so much love and generosity, and goodness all around me. I see so much to be grateful for. I decided to livestream church this morning. When the band started to play the first song, I realized it was a song that means so much to me. It is a song that speaks to me. It makes me think of Alex and his story:
Life is short, I wanna live it well
One life, one story to tell
Life is short I wanna live it well
And you're the one I'm living for
Awaken all my soul
Every breath you take is a miracle
Life is short; I wanna live it well

I got one life and one love
I got one voice and maybe that's enough
Cause with one heartbeat and two hands to give I
I got one shot and one life to live

So it brought tears to my eyes as I heard a little voice singing from the bed this morning along with Sean and the praise band. My son is such a miracle and so able to see things in the right way. He always thinks of others. In the middle of the night as he was awake with horrific pain, he said "Mom, I'm sorry you may have to spend Christmas in the Hospital because of me." I assured him Christmas was about us being together and not where we are. It gave us both a good chuckle this morning when Pastor Chris started his sermon talking about Christmas not taking place in the place you expect.

The praise band finished the service with the song See the Love. I see the love. I see it in hospital staff, I see it in meals delivered, I see it in visits from friends, I see it in generous gifts, I see it in calls and texts and messages. I see it all around me and I am so grateful!


Oops- I almost forgot the medical update...Things are pretty much the same. Last night Alex was in a ton of pain. We through every med we could at him and he was still sitting at a pain level of 7. We finally drained his Jtube this morning and he drained over a liter of fluids in the first 3 hours. He is continuing to lose fluids at an alarming rate. We are replacing the fluids for now. His GI system is just completely shut down. We have changed all possible meds to IV to alleviate as much going in as possible. We are also watching a spot near his incision that appears to be draining pus. There is concern that could be a small abscess. We are checking labs this afternoon and an xray in the morning to help us assess where we are and come up with our next plan.

Saturday, December 16, 2017

Saturday Update on Alex

I have been waiting all day to update because I wanted to be sure we saw everyone and had a plan before I updated.  Alex has had a better day from a pain standpoint. He is still on some hefty pain meds quite frequently, but at least he is more comfortable.

From an infection standpoint, he is on 3 strong antibiotics and has not had fevers so things are status quo there. As far as endocrine we have tried lowering his dose of steroids and he doesn't feel fabulous, but not horrible so we are going to try and stick with it.

Things look okay from surgery. He has one small area with some possible pus so we are watching that closely.

Our biggest issue is from GI. Hi GI motility has completely stopped. Dr. O came in and we have switched some meds to IV and added two new meds to try and get things moving. Right now everything is backing up and dumping out his Gtube. We can not attempt any feeds until we get things moving in the right direction. The meds we started are supposed to help the stomach. Once he stops dumping so much we will start a different medication to help his intestines. Unfortunately, Dr. Osuntokun was not optimistic about us making it home for Christmas.

Please pray for Alex's gut to wake up and for his pain level to decrease so we can make it home!

Friday, December 15, 2017

Rough Night

Alex had a rough time last night. His pain started to increase overnight and his gastric output is extremely dark and quite a bit. We are running some labs to rule out pancreatitis and we have increased his pain meds to try and get him more comfortable. The goal today is to try and get him out of bed. please say some prayers for some pain relief and overall improvement so we can work towards getting home.