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.

Results of today’s tests and surgery

Today’s been a pretty busy day. Patrick went at 9:30 to have an upper GI study today. They put a contrast solution into his stomach through his G-tube and then watched it move through his intestines. He’s had this test done a couple of times and the results are always quite interesting to see. As we knew, Patrick’s small intestine was quite fat and stretched out and his large intestine was pretty narrow, though not as narrow as I remember it being last September.

At the end of the study, the radiologist compared today’s images to the ones taken in September. Her result: “No significant change”. Yup, that’s right folks.. all that worry revealed that they officially discovered that Patrick’s anatomy is just as we expected it would be 6 months after his reconnection.

They are still wondering if this odd anatomy is to blame for some of the recent infections. (Bacteria or yeast from the gut leaking into the bloodstream through thin walls).. but are going to watch for a while to see rather than taking immediate action.

So – this afternoon Patrick had a new central line placed. This one has two lumens, meaning there are two tubes so you can put incompatible things in at the same time without them mixing like antifungals and TPN. We’ll be starting a new therapy hopefully tomorrow, too, where we fill the unused lumen with a solution that helps kill bacteria and fungus.

We’re still waiting for a plan to move forward from here. For some reason, even though little has changed anatomically, they’re acting as though something major was still wrong and therefore trying to make changes to diet, etc. I’m having to go all out working as Patrick’s advocate right now.. fighting for people to think things through and decide what’s best for Patrick based on himself, not on general rules and practices.

It’s exhausting work, so since he’s sleeping, I think I will too. Hopefully it’s a calm, restful night and I’ll be ready to get up and start pushing for a discharge plan tomorrow.

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.