In a recent discourse, President Dieter F. Uctdorf, a member of the First Presidency of the Church of Jesus Christ of Latter Day Saints, shared the following analogy.
“It’s remarkable how much we can learn about life by studying nature. For example, scientists can look at the rings of trees and make educated guesses about climate and growing conditions hundreds and even thousands of years ago. One of the things we learn from studying the growth of trees is that during seasons when conditions are ideal, trees grow at a normal rate. However, during seasons when growing conditions are not ideal, trees slow down their growth and devote their energy to the basic elements necessary for survival.
“At this point some of you may be thinking, ‘That’s all very fine and good, but what does it have to do with flying an airplane?’ Well, let me tell you.
“Have you ever been in an airplane and experienced turbulence? The most common cause of turbulence is a sudden change in air movement causing the aircraft to pitch, yaw, and roll. . .
“What do you suppose pilots do when they encounter turbulence? A student pilot may think that increasing speed is a good strategy because it will get them through the turbulence faster. But that may be the wrong thing to do. Professional pilots understand that there is an optimum turbulence penetration speed that will minimize the negative effects of turbulence. And most of the time that would mean to reduce your speed. The same principle applies also to speed bumps on a road.
“Therefore, it is good advice to slow down a little, steady the course, and focus on the essentials when experiencing adverse conditions.”
Now, mind you, we haven’t been exposed to any extremely adverse conditions, but after months of smooth flying, quick growing, and otherwise unexpected good health for Patrick, we’ve recently needed to slow down, and make some adjustments.
As I’ve mentioned before, for the past several months, Patrick’s stomach has been very upset. When we drain his stomach, we’ve been getting ever increasing amounts out. When we don’t drain his stomach, he throws up. At first we thought it was bacteria causing the problems and tried changing the oral antibiotics we gave him. We’d see short periods of improvement, but the problem always came back, and kept getting worse.
And then, right before Christmas, Patrick’s dietician called to tell me that his labs were showing signs of problems with his liver. This didn’t surprise us much. His eyes were looking yellow for the first time in a long time. But it wasn’t good news.
Then, if that wasn’t enough, Patrick got a cold. First he developed a fever in the middle of a horrific snowstorm. (Bad enough that, when the fever seemed to be going down, not up, we opted to wait out the storm rather than go up to the hospital. The fever went away by morning.) Then, as with any bug, his gut got worse. He started waking up sick during the night. And, because he was sick, we cancelled all our appointments and spent another week home, just the two of us for most of the day.
Meanwhile, Patrick’s labs were still showing elevated liver enzymes and bilirubin, meaning his liver was sick. His dietician and doctor decided to take the lipids (fats) out of Patrick’s TPN (IV feeding.) This is a pretty drastic step. The lipids are the part of the TPN that hurts the liver. Taking them away lets the liver rest and heal. However, it also takes away Patrick’s best source of calories – slowing down his growth. (That’s ok. He’s a bit of a chunk right now, anyway). It also can’t be done long term. Eventually, he’ll develop fatty acid deficiencies.
The good news is that, for now, his liver is responding to the treatment and his eyes are white again, scary lab numbers back down closer to normal.
Still, Patrick was draining over a liter of bile from his belly every day. If this is the result of an infection, that kind of long term illness could be hurting the liver. And whatever the cause, that represents a large amount of fluid and bile salts that the liver is putting out, but not receiving back from the colon. The liver likes that mission complete signal of getting its bile salts back again… so the incomplete process could be doing damage.
Finally, we had one sick night too many and I decided to call in help. So, just after the start of the New Year, I sent an e-mail to Patrick’s doctor.
Then – bored and stir crazy – Patrick discovered undressing himself. Yup. For a whole day, he tried taking off his clothes. By evening, when he could’t get his shirt off, he decided to take his dressings off instead. I was doing dishes and turned around just on time to see him snap his central line in half.
We ran up to the hospital and got the line repaired. It was quick, but we didn’t get home till 10. The glue had to set till 1:30 a.m., so I took a short nighttime nap, then got up to start the TPN.
But the line didn’t flush the way it should and by morning, the repair had sprung a leak.
So back to the hospital we went again. The repair proved difficult this time, taking over an hour of work and two repair kits to complete. (Amazingly, Patrick layed still, watching his favorite iphone app for all that time.)
By then, I was sick (I had the cold too) and exhausted from lack of sleep. So I decided that I wasn’t leaving the hospital till everything was taken care of. I went to the pharmacy and raised a stink about a prescription that I needed to fill but that was hung up by a change in our insurance that happened at the beginning of the new year.
Then I went upstairs and told Patrick’s GI nurse all of what was in the e-mail to his doctor and how worried I was about the high output, his liver, bacterial overgrowth, and all the rest.
Then I went home and got what sleep I could manage.
The next night Patrick’s doctor called me. He said that he thought that maybe Patrick’s stomach upset was being caused by poor motility, not bacteria. So we stopped playing with oral antibiotics. Instead, Patrick’s doctor restarted an IV antibiotic called erythromycin that helps to stimulate motility.
We now run this medicine by IV right before breakfast and right before dinner in the hopes that it will help the food get to where it needs to be. I worried because the IV tubing on the syringe pump we use for meds is so short. But Patrick doesn’t mind it. He actually quite likes carrying this pump around over his shoulder.
At first, Patrick’s motility really picked up. The results seemed immediate. Yes, I still get excited when my child poops, so lots of really full dirty diapers was good news for me.
But after Patrick threw up either at or right before dinner 3 days in a row, I realized that this was going to take some fine tuning.
Still, the medicine seems to be helping. Patrick’s total fluid losses are holding steady at just over a liter a day, but some of that is passing all the way through his gut – which means that he’s being given his best chance to absorb all he can.
So, we keep plugging away.. slow and steady. And overall, things seems to be better. Patrick’s appetite is improving. His liver is staying healthy. And output even seems to be starting to go down a bit.
We hope this is just a little bit of turbulence. We’ll keep working with Patrick’s doctors here and in Seattle. (It’s time for a checkup there anyway.) And we’ll keep hoping that this will be some momentary discomfort for him and not the beginnings of things going downhill the way that, by all rights, they should be doing. After all, he has less gut than any other child I have met EVER. That is bound to cause problems and get worse until something changes. Kids waiting for a transplant don’t usually get healthier with time.
So we’ll do what trees and pilots do and slow things down a bit, focus on the essentials. But we’ll do what little boys do, too: grow and play and learn new things.
One thing – between the holidays, family events, and illness – most of our friends and therapist haven’t seen much of us this month. And if you see Patrick right now, after about a month with little contact, you’ll be blown away by how much better he’s walking, how much more he’s talking.. and how cute he is with the new sign language that he’s picked up in the last few weeks.
Patrick Hoopes 