I will warn you that I am posting from my cell phone so if you notice strange errors you will know why.
Last night, the whole family felt kind of tired and discouraged and I decided blogging would have to wait so I could comfort Patrick. The day went a bit better yesterday. Patrick had to go without food for the morning to be ready for his scope. They gave him some IV hydration and let his belly rest. This let him also rest from his nausea and that helped a ton.
They did his scope bedside. (Something that still amazes me, but it is why he will need a stoma for a while.) Daddy laid with him this time while child life came and brought lots of distractions. That meant I watched more this time. They put the scope into the stoma, take some pics, then insert a tool that pinches off tissue for a biopsy. The intestine still looks mostly healthy but they saw a couple of small ulcers yesterday. Waiting for biopsy results tomorrow (or is it today?) to say what that means.
Just as they decided to come up for this, I got a message from a long time Facebook friend, Andy Jablonski. Andy is an SBS survivor.. In other words, a man who has lived with short gut his whole life. He runs a foundation called the SBS foundation. Here is his website. We have worked together for years because we promote the same cause. And as he is a patient here and has some testing, he came up to visit.
Patrick was thrilled to meet a grown up with scars and a line. I was happy to finally see face to face someone I have so often talked to.
Funny thing, though. I was telling Brian he was coming at they set up for this scope. And the woman radiology technician recognized his name and asked how I knew him. When I mentioned my support group, she then recognized me from my picture on the page. It is odd to be here where people know me. In Utah, I am mostly anonymous running my little website and support group.
After the scope, while Patrick napped, I snuck out to make some calls. To help with the cost of prescriptions and other copays, I am chasing an adoption subsidy and a medicaid waiver wait list. Not to mention negotiating with insurance to set up care here. And getting things set up for Patrick’s prescriptions to be shipped here. Oh, and trying to get Patrick homebound school. I could spend all day on the phone.
But I try not to. I try to give Patrick and his daddy time as much as I can so we painted and did other crafts, went for a walk, watched Blues Clues. But none of it could fix his melancholy like a call to grandma. And most of all, we needed sleep.
Thank goodness for nurses. Patrick’s nausea is better since they switched him from vivonex to elecare. His ostomy still makes him feel sick to look at our empty, though. (Gotta get some pouch covers somehow. I miss my sewing machine.) Last night, I got wondering if we could find a way to close the circuit while emptying to keep him from smelling it. So I mentioned the idea of bedside drainage (a tube from the ostomy pouch to a bag by the bed.) It is more work for them, but she readily agreed. Between that and her regularly providing warm packs and Tylenol, Patrick had had his first peaceful, uninterrupted night’s sleep in several days.
Therefore, sleep deprived mommy feels totally rested at 5 am because 7 hours if uninterrupted sleep (well, except vitals) is a luxury. And I can blog before going back to sleep. Thank goodness for nurses!
Patrick Hoopes 