This morning, Patrick called for me at 3 a.m. I crawled into bed and snuggled him close to help him fall asleep. And then he started mumbling to me in his own little language. “Temple. Patrick little baby. Daddy. Mommy.”
Today is the 4 year anniversary of the day we took Patrick to the temple to be sealed to our family. We’ve been talking to Patrick about it this week. One of the things that has been difficult about this trip was that it meant breaking our tradition of visiting the temple grounds ON this day. And so having him start out the day remembering that I’d told him it was a special day meant a lot.
Before he’d go to sleep, he followed with. “Mommy, big loves!” Yes. He knows it’s something special.
The rest of this day was hard. Harder than it should’ve been. Patrick had some scopes and a liver biopsy today. That meant he had to have a shower this morning with antibacterial soap. Patrick is afraid of the shower and even though today he didn’t cry, he didn’t like it.
But, we got up early and managed to do that and get out the door on time for scheduled labs anyway.
Too bad when we got to the lab, the orders had been cancelled. Brian remembered that the nurse in pre-op yesterday said that the team decided they didn’t need any additional labs drawn before the venogram and had cancelled them. Oops. Cancelled the day’s transplant evaluation labs instead.
So we went to breakfast and as soon as the office opened, called to let them know about the mistake so they could get the orders back in. We went for a walk and then back to our room. Patrick was obviously overtired from not sleeping off his anesthesia much the day before and was bouncing off the walls.
Finally, they called and said that the orders were in and that, if we hurried, we could still get things done and make our 9:30 appointment. So, we rushed over to the lab. They checked us in. They took Patrick back to get his vitals. And the fire alarm went off.
So we had to evacuate the floor.
We waited a while, but they didn’t let us back in, so we decided to walk around to the other building where our 9:30 appointment was.
That was fast. Basically, established that our insurance had told us the same things they were telling them about coverage and that we had a plan to get us to Omaha in 4-6 hours when the transplant call comes. (Charter plane. Yup.)
So we hurried back to the lab. I have been drawing Patrick’s labs because his line is so fragile right now.. So we just went ahead and got started before the nurse came in. (She didn’t seem TOO upset by it.)
And we finished to arrive to check in for Patrick’s scopes just on time.
Patrick wasn’t happy to be back in pre-op again. But, the nurse cared a lot about that and did her best to keep him occupied. Better yet, I knew what to pack for, so I had a much better collection of toys in my bag.
There was some fuss of some kind about the procedure. Someone was missing or something wasn’t communicated. I don’t know. But they pulled it together and started just half an hour late. In hospital time, that’s pretty on time.
The tests took about an hour and a half. Afterwards, the GI took us to an office to explain what he’d seen. It wasn’t much unexpected. Patrick has some nodules, or little bumps of irritation, all along his duodenum. Probably irritation from chronic bacterial overgrowth. Maybe something from his food allergies. He also has some irritation in his esophogus that could be from frequent vomiting. It sounded like that might be a little worse than before.
His anastamosis (surgical connection of small and large intestine) is still narrow, but not so much that it keeps things from passing through. It is enough that the dilation is starting to return to Patrick’s small intestine again. His colon, however, seems to have finally adapted to a somewhat normal size, instead of tiny and narrow like before. That is a positive change.
They took a lot of biopsies, including a liver biopsy, and it will take some time to have those results.
When they called us back to recovery, Patrick was pretty unhappy. We opted not to give him versed, his happy drug, this time and he woke up with some pain and without mom and dad and not happy at all about it. I hate it when he’s so inconsolable. It makes me feel helpless as a mother. It took some time and some pain medication and some lullabies to get him feeling better.. But after about an hour nap, once some of the air they use to inflate the gut to look around had been vented, he started to feel better. I let him play some games on my ipod and that helped a lot.
When the pain settled down, the nurse got ready to discharge us back to our hotel room. We explained that we’d been told we were staying.
(Livers bleed easily and an active boy after a liver biopsy is safest in a hospital. Besides, we wanted to get a feel for what it was like to be inpatient here.)
They resident had forgotten to order that and it took another hour or so to get things sorted out.
By the time they got us to the pediatric floor, we were taking their last room… A tiny little closet feeling space in the corner of “the old wing.”
The accomodations are not great. They are, however, no smaller than the small rooms back at our home hospital.
The medical care has been a refreshing change, though. We arrived late in the afternoon. A nurse practitioner from the transplant team met us to write the orders. (Note: NOT a resident.) She was so familiar with Short Bowel Syndrome that I could just tell her Patrick’s treatment plan and she understood it. No trying to talk me out of the things that have worked. No “We’ve never used an ethanol lock before.” Just a quick run-down of the plan.
Even though we arrived late in the day, they were able to get TPN made and hung by evening. (Later than I’d have liked, but that was a busy nurse..not the pharmacy or doctor’s fault for once.) They were able to get Patrick’s special replacement fluid made. They knew the names of all of his diaper creams.
There were a couple of medications that they didn’t have an equivalent for. We opted, since it was only one more missed dose to skip them… But they didn’t bat an eye when we said we wanted to use our home melatonin to help him sleep through the night.
It was one of the easiest admissions in my memory. In fact, it’s been kind of nice to not feel like I need to teach the nurses how to take care of us. The nurse who admitted us said “These Short Bowel kids, they’re what we do here.”
The rest of the evening was kind of blah. Patrick, thankfully, was quite cuddly and didn’t fight being kept in the bed. Child life showed up quickly and brought us cars and blocks and Candy Land and that, plus some of the things I brought, has done quite well to help pass the time. He played with my tablet for quite some time, too. (Then threw it and cracked the screen. Thank goodness, Brian reminded me, we bought accident protection on it!)
A good friend of mine from college came to visit this evening. He lives a couple of hours away, noticed that I mentioned we were here this week, and happened to be driving through at that time. So he came up. What an unexpected treat to have a visitor!
I have kind of a melancholy feeling tonight. The hospital is quiet and they’ve left us mostly alone. I should be happy about that. But I think the long day has worn on us. And seeing Patrick not feeling well has worn on us. And the reality of the idea of needing a transplant and living in the hospital for months is starting to sink in to us.
And the room is old and small. And the pumps are different and the monitors are different.. and they sound like the ones in surgery and in the ICU back at home. The alcohol wipes don’t seem wet enough to me. The prefilled syringes all have needles on them, which seems wasteful to me. They wanted to put a giant “Ethanol. Don’t flush!” sticker on Patrick’s line. The medication syringes are orange instead of clear. There aren’t enough fun foods on the room service menu. Even the way they connect the tubes to the claves is different. In other words, it’s not home. And we all know how well I deal with change.
So tonight, I’ve got a little bit of the transplant evaluation blues. But thankfully, I get to go cuddle with my little boy in his bed all night long! I’m not even gonna bother making up the parent bed. We both need the cuddles. And meanwhile, Brian is back in the room hopefully getting a quiet and good night’s sleep, in case we don’t. Labs at 6 a.m. tomorrow and more tests at 8:30 a.m.
Patrick Hoopes 