I wish I was able to come on and post about how well things have gone today. Unfortunately, today has been a rough one. It started last night. Alex had a reaction to the bolus of the new medication to get his gut going. There was a lot of discussion about if it was an allergic reaction (a real possibility given Alex's history) or a known side effect of the drug. Immediately after getting the medication he turned bright red, starting itching, heart racing, light headed, and became extremely nauseous. Alex became really anxious because he knew we were supposed to continue on a slower drip of this medication. i was also nervous about this. I wanted to watch him as it started running and make sure he was okay so neither of us got great sleep. Alex woke up in a bit of a funk this morning. After everything he has been through he certainly deserves to have a day where he isn't happy! He is tired of constant people in our room. He is tired of everyone messing with him. He is tired of the doctors pushing on his already hurting stomach. He has not felt well physically today either. He can't pinpoint what is wrong. He just "doesn't feel good". Our endocrinologist kept his hydrocortisone dose the same. His hospitalist didn't make any major changes. Pain went up on our secondary medication in hopes that he won't need to push the button on his PCA as often. GI is pretty much just waiting and watching, but we are keeping a close eye on his labs because his already high pancreas labs doubled overnight. (The med we are using is known to have a side effect of causing Pancreatitis, but it is one of our only options) The really tough visit was from surgery. First he wanted to check his surgical site and caused quite a bit of pain. Then he mentioned that if things don't start moving in his gut by the end of the week, he will have to take Alex back to the OR on Friday and open him back up to make sure their aren't more adhesions or any other issues that could be adding to our problem. This is obviously the last thing we want to put him through.
Please pray for us. Pray for my sweet boy...for his pain, for his heart, for his gut to start working, for him not to develop full blown pancreatitis.
Ali
Alex and Maddy
Tuesday, December 19, 2017
Monday, December 18, 2017
Baby Steps
We have finally seen all of our doctors today. Last night Alex slept much better and I got a good night sleep!!! In some ways things are pretty much the same and in some ways we made a few baby steps forward today.
Alex's GI system is still dumping a huge amount of bile, but it is less then yesterday. Dr. O has started another IV medication to try and get his gut working. His x-ray this morning was read as showing a possible obstruction, but we are hoping it is just his typical pseudo-obstruction. If things don't start to improve with this new medication we will have to do more testing to be sure there is not a true obstruction. If he is doing okay in the morning and his output is less then we will try clamping his J-tube for an hour at a time and see how he tolerates it.
Pain team tweaked his pain meds today. We went down slightly on a medication that can slow the gut and added a new medication to try and keep his pain at an acceptable level. We also tweaked his replacement fluids to try and keep his fluid balance at a good level. One of the biggest struggles we are having is the amount of IV medications and fluids we need to get in. Certain meds are not compatible with others and it is a huge puzzle trying to figure out how to get it all in.
Alex did get up and walk a short distance two times today which was great.
Surgery is happy with how things look. They are just waiting for his gut to wake up along with the rest of us. We are still watching the discharge to be sure it is not infected, but he seems okay from a surgery standpoint.
Infectious Disease is just kind of following along to finish out, but his infection is all but cleared. He will be done with his antibiotics on Christmas Eve.
I think that is it! Whew!!! Please continue to pray for Alex's comfort and for his gut to wake up.
Ali
Alex's GI system is still dumping a huge amount of bile, but it is less then yesterday. Dr. O has started another IV medication to try and get his gut working. His x-ray this morning was read as showing a possible obstruction, but we are hoping it is just his typical pseudo-obstruction. If things don't start to improve with this new medication we will have to do more testing to be sure there is not a true obstruction. If he is doing okay in the morning and his output is less then we will try clamping his J-tube for an hour at a time and see how he tolerates it.
Pain team tweaked his pain meds today. We went down slightly on a medication that can slow the gut and added a new medication to try and keep his pain at an acceptable level. We also tweaked his replacement fluids to try and keep his fluid balance at a good level. One of the biggest struggles we are having is the amount of IV medications and fluids we need to get in. Certain meds are not compatible with others and it is a huge puzzle trying to figure out how to get it all in.
Alex did get up and walk a short distance two times today which was great.
Surgery is happy with how things look. They are just waiting for his gut to wake up along with the rest of us. We are still watching the discharge to be sure it is not infected, but he seems okay from a surgery standpoint.
Infectious Disease is just kind of following along to finish out, but his infection is all but cleared. He will be done with his antibiotics on Christmas Eve.
I think that is it! Whew!!! Please continue to pray for Alex's comfort and for his gut to wake up.
Ali
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:
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!
Ali
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.
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