Being heard

Today I felt like I was heard. That makes so many things ten times better. Even if I don’t get all the answers, being heard just makes the whole day different. Someone saying they will try find solutions instead of telling you they’re not concerned.

We had another night where she was uncomfortable and crying in the middle of the night and needed to be catheterized by me twice. In the morning I talked with urology and they agreed that we should try just leaving a catheter anchored in for the night so she can just drain as need be for now so we will be trying that tonight. I also expressed my frustration with the placement of the Monti and told them I would like it moved and they said that is a possibility at some point. That was a huge relief just to know we might not have to battle this for the rest of her life. She will need to have another surgery in a few weeks to remove the stent from the first surgery. I doubt they will do it then but I will ask.

They agreed to get a neurology consult and that went really well. They came in right away and expressed their concern as well. Her own neurologist also happen to be here today so that was a plus having someone who knows her baseline. It could be three things and they decided to look into all three. I guess the antibiotic they put her on for the incision infection has very common side effects of confusion but today was the last day so if that is it then it should started resolving. It could be increased seizure activity so they did an EEG. It could be a stroke so they did an MRI. We’re keeping fingers crossed that it was the antibiotic and that one makes the most sense with the timing of everything. We should get all the test results tomorrow.

The ostomy nurse came in and helped me change the bag again…. And then again…. She brought in another type of tape that we lined the adhesive with so we’ll see if that holds up for more than one day.

We kept the feedings the same today (210ml) hoping that another day would help…. But it didn’t. There was still milk in her stomach when we tried for the 6:00 feeding. We gave her a motility Med and then tried again 40 min later and I was still able to pull out 375ml at 6:45 :( So we skipped that feeding…. Again. Tomorrow we will try to give the motility Med with every feeding and see if that helps us get where we need to be. If not, we will go to doing an overnight feed with the pump. Adding the pump takes away our bolus feeding freedom and adds more problems to emptying the ostomy over night but we’ll do it if we must to get to go home. Again, not great news on that front but there is just something about having options and a plan that makes it feel better.

Our days go by in a blur. Every night I think we are going to get to bed earlier and that I will get this update out earlier but it just doesn’t happen. The hours of the day buzz by with doctors and nurses and therapies and emergency bag changes and tests.

Thank you all so much for all the encouragement and prayers after yesterday’s update. I could definitely feel the Lord lifting me up and giving me strength for another day today. I’m still hopeful that we will be home soon, maybe even this week. I’m holding that hope tightly and not letting the darkness steal it…. Even on down days.

Laila and I have been on our bat phone to Jesus as well about all of this :)

1 Peter 5:6-11 Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you. Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world. And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. To him be the dominion forever and ever. Amen.