bowel obstruction – Patrick Hoopes

An excellent Seattle trip

Patrick had his quarterly appointment at Seattle Children’s on Thursday. And it was a very good trip in every way.

Because Patrick’s morning med schedule is so complicated right now, I opted to fly out on Wednesday afternoon. Our flight left at about 2 p.m. As usual, it took some effort to get through security and I probably looked insane hauling Patrick, his duffel sized diaper bag, two suitcases, a carseat, and of course, him in his stroller around the airport. But we made the flight without incident. In fact, we landed early and had time to visit and exchange blogs with a very nice woman from the same flight while we waited for our ride.

We stayed with my friend Lindy, her husband Kelly, and her little girl, Lauren. Lauren is 4 months younger than Patrick. They have always gotten along really well and it was fun to let the two of them play. Most of the play consisted of stealing each other’s toys and pacifiers.. but they did spend some time dancing to YouTube videos and there was more than one hug exchanged.

Patrick and Lindy

Thursday were the appointments. It was kind of strange to actually be seen in clinic. This is the first time since Patrick’s evaluation a year ago that we’ve done this visit in clinic instead of inpatient.

They did the usual set of vitals: weight, length, blood pressure. As we finished, another little boy about Patrick’s size came in to be weighed. He had a Broviac line and TPN in a backpack, too. I think this is the first time that I’ve ever met another kid on home TPN. It was kind of strange for me to see.

Our first visit was with Patrick’s dietician. She walked in and her first words were, “This weight looks spectacular! I had to come see if it could be correct!” She remembered meeting a tiny, frail, jaundiced baby last year. To be met by a happy, chunky, energetic (almost to a fault) toddler was a surprise.

She looked at Patrick’s TPN, his labs, and his growth charts. We talked about his current diet and in the end, she said that she was nothing but pleased with what she was seeing. She even said that it’s time to back off a bit on his feeds so that we don’t make him overweight.

It’s been recommended recently by some doctors to try continuous feeds again so I asked her her opinion of it. She told me that it’s pretty common for kids with anatomy similar to Patrick’s to stop continuous feeds after this long. She said that focusing on oral feeding so that Patrick would have an easier time learning to eat after his transplant was her preferred goal.

She also explained that some kids who’ve had problems with hypoglycemia when tiny can outgrow the problem and tolerate breaks from TPN. She watched Patrick attempt a few head dives off the bench we were sitting on and said that she thought it might be good for him to have some untethered time. This is something I’ll discuss more in depth with Patrick’s GI and dietician here. We’ve always been a bit nervous, considering his history.

Looking at books in the waiting room

Next, Patrick’s transplant nurse came in and took copies of his labs and other medical history that I’d brought with me. Then Dr. Reyes, the transplant surgeon joined us.

Again, he was excited to see how much Patrick has grown. He asked me how well he was eating and pooping since his ostomy was taken down. I explained to him all the questions that had been raised last month about whether or not Patrick had an obstruction that needed to be fixed. Then I told him that some of the doctors wondered if he needed another surgery to try to correct the problem.

Dr. Reyes’ reaction was quite direct. He said “No. We’ll get him a transplant. That will fix the problem.” He didn’t think it was a good idea to mess with things when Patrick is otherwise stable and healthy… especially if that reduces the remaining pieces of intestine.

I asked how Patrick’s reaching 10 kilos in weight would affect his candidacy for a transplant. Dr. Reyes said that that was a really big deal for him. This size changes the rules a bit for what he needs in a donor. Before, we’d been told the donor needed to be the same size as him, preferably smaller. Now that he’s bigger, they can reduce the size of a larger donor, too. His donor could be up to 6 or even 8 years old. The result is that his chances of finding a match go up.

So I had to ask if they could estimate a wait time. The answer, for all who are wondering, is still no. Dr. Reyes was careful to explain to me that Patrick’s B positive blood type is a mixed blessing. It means that there will be fewer matches. However, it also means that there are fewer waiting children with his blood type, which means his priority is higher, even while he’s healthy. Dr. Reyes just kept saying “We’ll get this transplant done.”

Next we talked about liver health. Patrick’s biopsy in September showed some early scarring of his liver. However, doctors responded quickly with a low-lipid diet and for the past several months his bilirubin and liver enzymes and other measurable signs show that his liver is relatively healthy. The clarity of his eyes and skin are also proof of this fact.

I told Dr. Reyes that we’ve been worried that Patrick’s spleen reacts so severely to infection. He admitted that the scarring in the liver was probably contributing to problems with the spleen. Recurring infections don’t help either. However, he said that a large spleen wasn’t as much of a worry if the liver isn’t also large.

Transplants are scary in a patient with a failing liver because as the liver fails, the body stops clotting as well. Dr. Reyes said he’s not worried about that at all with Patrick. He feels safe doing the surgery. Then he said that if you fix the problems with the intestines, the liver can heal, and the spleen will get better. And he told me again, “We’ll get him transplanted.”

I asked one last question. Should we be keeping our bags packed? The answer was a resounding “Yes”. I really need to wrap my mind around that and get things in order so we’ll be ready to go quickly. The regular trips to Seattle and to the hospital here keep me practiced in packing and packing quickly – but still, it would be good to feel in some way prepared.

The mood of Patrick’s appointments was almost celebratory. His good health, his weight gain, and just the fact that we made it to a clinic visit without being admitted were all worthy of celebration.

We’ll go back again in July.

Roughousing with Lindy

The rest of the trip was pretty laid back. Lindy, who was kind enough to drive us half an hour to the appointments and then wait two hours for them to be done, took us back to her house. Patrick and Lauren crashed early. I was amazed that Patrick put himself to sleep there on just the second night.

And then, after a pretty amazing feat of getting three babies (Lindy was babysitting a 4 month old that day) into the car and off to the airport on time to catch our flight home… including all of Patrick’s medical care.. was impressive. Not the smoothest, but we accomplished it.

We got home Friday afternoon exhausted. Patrick and I both went to bed early. We all slept in. And today has been spent mostly in recovering from a pretty intense week.

I can’t really complain, though. It may be exhausting to chase after a one-year-old who crawls around the house emptying drawers and making monster noises… especially when I am the only thing standing between him and many broken lines. But I wouldn’t want to trade having him happy and wiggly and full of life – and best yet, at home – for anything in the world.

Patrick’s anatomy

For some of our more curious readers, here is an image that can hopefully help you visualize what all the hoopla of “bowel obstruction” is about. The connection point between large and small intestine isn’t very visible because it’s so narrow, but the results of this narrowing is apparent in how much the small intestine has been stretched out as a result of the pressure. Kinda reminds me of those cartoons where there’s a kink in a garden hose that fills and fills until it looks like a big balloon.

In other news, we should find out in the morning whether or not we can go home tomorrow. The docs are a bit worried about making sure that we have a plan to feed Patrick without causing him to loose too many fluids so it’s hard to keep him hydrated. So we’ll see how he does for the night and they’ll make a decision in the morning.

Possible Bowel Obstruction

For the past few days, Patrick has had a really swollen, sore belly. A lot of it has to do with his spleen and how big it gets when he’s sick or when he gets a transfusion. He’s had both this week and so his spleen was really big.

However, with a yeast infection, there’s a chance of the infections building up inside an organ and causing similar symptoms. So, yesterday Patrick went for a CT scan. The findings weren’t fungal balls or absesses.. in fact, they weren’t what we expected at all.

Yesterday afternoon a doctor came to tell us that they’d seen evidence of a possible bowel obstruction. He then went on to describe findings that were kind of confusing to us. Basically, he explained that Patrick’s intestines were very dilated before an obstruction and very narrow after it.. kind of like when you blow up one of those long balloons and the air doesn’t go all the way to the end of the balloon.

The reason this confused us is that it sounded exactly like a description of the problem of a narrow colon that we’d discovered after Patrick’s ostomy was taken down. We didn’t know if the findings were new or if they were just telling us what we already knew.

Yesterday the GI attending and the surgeon, Dr. Rollins, who’d reconnected Patrick’s intestines back in September sat down and looked at the images together. In the end, the decision was that Patrick’s small intestine is much more stretched out than it previously was and that the place where the small and large intestine were sewn together is still very, very narrow and probably is the cause. (Like if you were to pinch your long balloon so the air can’t pass through all the way to the end.)

Now the question remains if this is something new or not. It’s possible that the surgical site has scarred making the connection even more narrow and unflexible.

Tomorrow morning, they’ll do another study where they put contrast into his belly and watch it move through to his intestines. If they find that the opening is about the same size at it was after surgery, they probably won’t do anything about it right now. However, if they find significant narrowing, then Patrick will probably have surgery tomorrow night or sometime Tuesday. They’ll take the scarred section out, taper down the small intestine to make it a better fit to the narrow colon, and sew the two back together.

Both the GI and the surgeon are saying that they think it unlikely that this problem is completely new or that Patrick will need the surgery. However, they want to prevent bigger problems in the future for him, if they can. So – they’ll do the study and then we’ll talk about it.

Either way, Patrick should be able to get a new central line in the next couple of days. They’ll try to put in a “double lumen” meaning that two tubes go into the vein, instead of one. The double access will make it easier to give antibiotics and antifungals and might make it possible to help prevent them by treating the unused lumen with medicines to prevent infection.

I’ll do my best to keep you updated here as we find out more.