Here’s the latest carepages update on Adam. Thank you for your prayers and please keep them coming!
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Day 12 Pittsburg
Adam had a very rough night last night. Over the past several days he has had tummy pain that comes goes but yesterday it got much worse. He couldn’t tolerate any formula in his stomach for long and we finally turned it off completely in the evening. They started him on IV nutrition (TPN) last night as we give his belly a rest. Over the course of the night his “attacks” of tummy pain got worse and he was up most of the night with it. The morphine doesn’t seem to touch that pain. We waited for a consult from the GI docs all day and when they finally arrived they didn’t have much input. They wanted to put a little different feeding tube in him called a GJ tube which would bypass his stomach but we decided to wait on that because we don’t feel like they are addressing the cause of this problem. Every time a new symptom pops up they treat it with another drug and this poor child is now taking way too many of them.
We are very concerned about this tummy thing and each time he had an attack and we asked for the resident to come see him. But by the time they arrive he is back asleep. I think at one point they thought we were nuts. We demanded a belly x-ray and they did it at his bedside about 3:30am.
We also asked for an abdominal ultrasound and that will be done soon. If they don’t find anything we are at a total loss about what’s going on.
He had his “make-up” brain MRI this morning about 7:00 and is still recovering from that anesthesia. After the MRI while he was still sedated they did the lumbar puncture and bone marrow biopsy so he should be pretty sore when he wakes up. He will also have to deal with a sore throat again for a few days from the breathing tube during MRI.
It has been a very long night and we are just waiting on results at this point. It’s frustrating and scary to not know what’s going on with his belly. And we have been frustrated with the doctors the last few days as each one as his or her own specialty and defers to others when it doesn’t fall exactly in their area. We need one of them to step up and take control and look at the big picture. So far only Joe and I are doing that and I’m thinking we’re probably not qualified to be making some of the decisions that they have left to us…
Please pray for guidance for these docs and for us. This sweet baby needs to not hurt anymore and start trusting again. He’s so paranoid if anyone comes in the room. “What are they gonna do?” “Is it going to hurt?” “Will there be tape”? “When is it done?” It’s just so heartbreaking.
I was able to spend most of yesterday with the kids. I miss them so much and wish I could keep them all here with us. My heart hurt so much when I had to leave them. But my heart hurt when I had to leave Adam, too. When will this end?
Thank you for checking in on us and for your continued prayers.
With so much love for you all,
Katie and Joe