One trend that I’ve noticed is that when life gets stressful, Patrick’s gut gets sicker. So of course, as the month of July has been one big busy, stressful month, of course Patrick’s tummy hasn’t felt well.
First, his drainage tubes stopped working as well. I wish I could figure out why it happens. There’s not really a rhyme or reason to it. Just eventually they get too old and they stop draining as well and I start having to get up in the middle of the night to check on them. Every night. And eventually I catch on and replace all the tubes and they start to work better. Unless, of course, Patrick clamps them during the night or opens a port or takes them off. Because when his tummy hurts, he doesn’t sleep as well, and then he plays with the tubes more which is just another reason why whenever this is happening, I set my alarm for 3 a.m. so I can sneak into his room and make sure his belly is draining and he’s getting enough fluids.
Because whenever this get out of whack he starts secreting more, too, and if I’m not vigilant he’ll start vomiting and/or get dehydrated very quickly.
So the night that Brian got home from trek, Patrick got sick during dinner. And by the end of that weekend, his output was on the rise.
Monday I made a mistake that probably made the problem worse. I was feeling a little bit off all morning and as I was grocery shopping decided that maybe a little protein would help. So, I grabbed a can of cashews. I intentionally skipped the peanuts because of Patrick’s peanut allergy. But I forgot about the higher risk of cross-contamination with all nuts.
Well, I ate a couple of handfuls of cashews on the drive home, then took Patrick inside and got him ready for his nap. While I was changing his diaper, a hive appeared on his cheek and I immediately knew he was reacting to my eating cashews.
So, I grabbed some zyrtec, his allergy medicine of choice, and gave him a half dose. Then finished getting ready for naptime.
Meanwhile, his eyes got all red and watery and the one blotch on his cheek started to spread to total redness around his mouth. So I drew up the other half dose of zyrtec and gave it to him.
That dose made him start to cough. But he kept coughing, and couging, and coughing, so hard that it started to make him gag and throw up.
I carry an epi pen and my instructions are to give it with any signs of respiratory distress, and then to call 911 and have them take us to the emergency room.
However, I knew Patrick was having a bad gut day and I didn’t want to go to the hospital and have someone else take over his care and risk him getting dehydrated along the way if I could avoid it. And once you have epi, you HAVE to be observed in the hospital.
So, not knowing what else to do, I grabbed the phone and called 911, got out my epi pen, and started to pack essentials for a trip to the hospital.
The paramedics arrived in about 5 minutes and by the time they got here, the zyrtec was finally working and his coughing had stopped. The redness in his face was fading, too.
The paramedics watched his breathing, listened to his airway, and put on a pulse oximeter to check his oxygen levels. All the time, he kept getting better and better. Finally, after about 10 minutes of evaluation, they said that they didn’t think he needed to go with them in the ambulance. I signed a few things and they left us. I called his allergist to let him know about the incident and find out if there was anything more he wanted me to do.
Then, I went to rock Patrick back to sleep. The doorbell rang, a neighbor come to check on us. And when I got back to Patrick a few minutes later, he’d lain down in the recliner and gone to sleep.
What does this have to do with his gut? Well, allergic reactions can impact the gut for several days afterwards. And as we were already on the upward trend, this tipped the scales.
I started draining nearly two liters a day from Patrick’s stomach. Most likely, this was a combination of blockages allowing bacteria to grow.
Still, as stable as he seemed with all that fluid lost and replaced, I didn’t feel I should leave it unnoted.
So, I called his Dr. Jackson’s nurse and left a message. Then we went on with our normal life, including our trip to the mountains and some fun touring downtown with his cousins. (These pics were taken on the roof of the conference center and at the children’s exhibit at the LDS Church History Museum.)
The antibiotics I gave for bacterial overgrowth finally started to work after a couple of days, and that’s when Dr. Jackson called back. I told him what had been going on and he agreed that it was a bit worrisome. We had some cultures drawn, just in case, but they stayed negative.
And, we decided it was time to have a better look at the problem.
So, Sunday afternoon Dr. Jackson called to tell me he’d been able to add Patrick to the schedule for Tuesday for an endoscopy. Monday was a state holiday, so everything was closed.
We made the appointment for late Tuesday morning. Brian went to work and I got up and got Patrick dressed in his comfiest clothes, packed for all scenarios, and then went to the hospital.
Usually a scope takes about half an hour, but this one took much longer. That wasn’t a surprise, we knew that Patrick isn’t your normal case and Dr. Jackson was going to be VERY thorough.
I was less bothered by the wait than by the fact that they’ve redone the surgery waiting room and put little dividers in to improve privacy. Changes to my medical routine are disconcerting. And besides, how was I going to entertain myself by people watching when all the people were in nice private little compartments?
Finally, Dr. Jackson came with some results. Mostly, they confirmed what we knew, but what some doctors had questioned. They also brought good news.
Despite all of the reflux and stasis, Patrick’s esophogus is healthy. His stomach is, too, except for a little wear right where it drains into the intestine.
As we already knew, the duodenum is very distended. “Cavernous” is the word Dr. Jackson used to describe it. Almost it’s entire surface is covered with little raised bumps known in the medical world as lymphoid nodular hyperplasia, or nodules. This is a sign of inflammation in the intestine and could be a result of food allergies or just irritation from constant stasis and bacterial exposure. Dr. Jackson took biopsies to find out which. If allergies are to blame, then we can work together with his allergist on a plan to better manage them.
Finally, Dr. Jackson was able to see the connection between small and large intestine. He describe this as “what looks like a dead end with lots of folds. But there was a tiny slit in it.” He put the scope through that slit and found… Patrick’s colon. Which is healthy.
This is obviously the cause of Patrick’s blockage and distension. The narrow connection used to put his intestines back together has never grown. It’s so small that little passes through it when it’s empty, and when things go wonky, nothing gets through at all. So we talked about the option of having Patrick’s surgeon go back in and redo the connection. And we agreed that he and the surgeon here would take all of this information to the transplant surgeon and GI in Seattle.
Hopefully, together they can come up with a recommendation of how to proceed.
It’s pretty obvious that leaving this untreated is just going to cause more and more problems. And we’re sad that another surgery is probably inevitable. However, we were relieved that this surgical option is on the table because it can treat the cause, not just the effect, and they may be able to operate on just this small segment instead of the entire length of the intestine.
Oh – and one other finding: Dr. Jackson removed a sterile cap from Patrick’s intestine. Who knows how long ago he swallowed it, because it couldn’t make it through the slit. We are being much more vigilant about cleaning up caps left lying around and not letting Patrick chew on them. The chewing gum he swallowed the sunday before the test, however, was not there. So I’m still letting Patrick chew gum.
Letting Dr. Jackson get up close and personal with Patrick’s insides got us some much better answers. Knowing for sure what is going on is a big relief.
Patrick wasn’t too happy waking up from the anesthesia, but once he’d burped some of the air from his stomach and had a nap, he was up and playing. We came home and watched some bob the builder and read some books and by bedtime, he seemed to have forgiven us the inconvenience.
In fact, he forgot all about it when we took him to Hollywood Connection and let him play his very first game of miniature golf. His job was to get the balls back out of the hole. He was good at it, but then would just put them back in again.
Playing mini golf while connect by IV lines to your 2 year old is challenging to say the least. I’ve never had my adrenaline so high in a mini golf game before in my life!
Patrick Hoopes 