We had an amazingly quiet hospital night last night. That is something I could get used to. After Patrick’s 12 a.m. vitals, they left us alone until morning. If the bed’s mattress hadn’t kept adjusting itself to try to balance out two people sleeping there instead of one, we wouldn’t have had anything to disturb our sleep.
Not much did, anyway. Only 6 a.m. when the nurse came and woke me so I could draw Patrick’s labs. (I’m not letting anyone else access this line while we’re here. I don’t want to risk breaking it.) And then she insisted on having a diaper change to chart nighttime urine output. Silly people. Adults don’t wake up in the middle of the night to go to the bathroom just so nurses can chart it. Why do they insist on having that for children?
Amazingly, though, when we finished, I asked Patrick if he wanted to go back to sleep, he said he did. We dozed off and on for another hour, then he decided to be awake, even though he was obviously still exhausted.
Oh well. We had tests starting at 8:30 and that barely gave us time to get ready and get down there on time.
Patrick had an Upper GI with follow-through this morning. That means that they put contrast in through Patrick’s g-tube and then watched it on x-ray until it had moved through to his colon.
This test has always gone very quickly before. Patrick had “good peristalsis,” or squeezing movement, even with his dilated intestine. Today, that wasn’t the case. His duodenum didn’t really squeeze at all. Just let gravity move the contrast through slowly. Perhaps this is why his motility is still bad after his tapering surgery?
Anyway, the slow motility meant the test was slow, too. I did my best to entertain him with signs and songs. He wasn’t very patient with it. But we got the results we needed, and better yet, he wasn’t unhappy, either, so I could watch the images as they took them this time and understand, now, what I was seeing. Makes a whole lot more sense now.
And Patrick was thrilled that they gave him the chance to be transported in a kid-sized wheelchair. He has wheelchair-bound friends at school and that made him feel like them.
After that test, we went back to the room. We’d told them we had appointments later in the morning and asked if they wanted us to go to them from inpatient, or to discharge us early. Amazingly, they called down the nurse practitioner and she whipped out a discharge in just the time we spent downstairs in radiology. I’ve NEVER been discharged that easily or quickly from the hospital.. certainly never before rounds without making plans the night before.
Better yet, they let us just take down the TPN they had running, switch it to our pumps, and take it with us. (Something almost unheard of at our home hospital.) While we did that, she explained that their standard protocol is to let patients run their home TPN or to spike the bag of TPN they brought in with them while waiting for a new bag to be made. What?! We have been fighting THAT policy at home for 4 years and still losing.
Anyway, we got out with time to come up to our room and unwind a bit before our next appointment.
That was with one of the hospital psychologists. Her job was to interview us to make sure that we were capable of caring for a transplant patient, and that we really understood what that meant. One of her questions was whether or not we’d been surprised to hear that our son’s life could be prolonged when we got to this hospital. I don’t think she’s ever heard a “no” to that question before. But I know they don’t often have patients come to them who are stable and doing well with their treatment at home. And they certainly don’t often meet parents who say, “We don’t know how long or short our child’s life will be. But that’s part of what we signed up for, and we don’t mind not knowing.”
Anyway, thankfully we got out of that meeting a little early and there was a little time to let Patrick grab a nap.
Our next appointment of the day was with an occupational therapist. Her purpose was to make recommendations on what kind of therapies Patrick might need to learn to eat after transplant. I loved meeting with her! She totally got Patrick. And she got that we have been doing a lot for him by way of therapy. We talked about what he is eating, what therapies we’ve tried, and the setbacks that his brain injury and short bowel syndrome have caused him.
While we were talking, Patrick decided to buckle and unbuckle her belt. Not the best game to play, but rather than being bothered by it, she watched how he worked with it and then said, “He doesn’t seem to know the right amount of force to use for this kind of task. His proprioceptive skills, or awareness of self, seem a bit behind.” That made me so happy because proprioception is one of Patrick’s BIG challenges and something that we regularly work with in therapies of all kinds for him. And for her to see that in something so small gave me confidence in who I was talking to.
She then went on to say that, based on the history we’d given, and that observation, she was going to express to us an out-of-the-ordinary recommendation. She was going to recommend that we consider NOT using the Intestinal Rehab Program’s world-famous feeding program to teach him how to eat. She said that the technique just wouldn’t match Patrick’s needs.
In large part, Patrick has a hard time eating not because he is inexperienced with or unwilling to eat, but because he has a difficult time coordinating his movements in order to eat without fear of gagging or choking.
She recommended that we request that an occupational therapist do feeding therapy for him instead or in addition to that program. That way, his motor planning issues could be addressed, rather than trying to force him to eat and expecting that when he became more used to it, he’d be more willing to do it.
She also talked to me about how to get Patrick therapy services through the school district here. And when I asked her if his IEP could follow him, she grinned from ear to ear and said, “I love talking to a parent who knows this language.” So often she deals with parents of babies, not parents who’ve been actively seeking therapy for years.
This may have been one of the more useful conversations we had all week.
That visit was so quick that we had a very rare hour and a half break. We came back to the room and Patrick and I made paper and sticker valentines while Brian caught up on some work and phone calls.
Then we went to our last stop of the day, the vascular lab to have an ultrasound and doppler of Patrick’s veins to look at IV access from that angle, too. Patrick was AMAZINGLY cooperative. The test was over in less than 10 minutes. I’ve never had one so fast and can’t decide exactly what that means.
Patrick was so exhausted when that was all over, though, that he couldn’t stand being in the room again.
Finally, we just went to our car and started driving. We drove to the far west side of Omaha and had dinner at Old Chicago. Patrick downed some marinara sauce there. He was so happy to be allowed to eat and drink again that he forgot the effect it could have on his poor little gut. Thank goodness for a well-stocked diaper bag.
And then, not wanting to go back and bother our neighbors too early, Brian found a replica of an early Mormon Pioneer tabernacle and a church visitor’s center across the river in Council Bluffs, Iowa. It was a half an hour drive, perfect to spend the rest of the evening. But it started to really snow as we crossed the state line and then the gates were locked, so we just drove there, looked, and then drove back. We’ll visit again someday if we can.
And now, we are headed to bed a little earlier than past nights and looking forward to not having an alarm set before 7 a.m. Hoping Patrick will stay asleep that long in the morning.
Patrick Hoopes 