We're Free

Karen and I both had allergies in the hospital. One of the nurses complained about it too. I'm not sure if it's from the smelly bouquet of flowers they always had out there, or if there's just a lot of outside air getting in. This caused a new issue with Karen's NG tube. Her nose was runny, and mucus would drip down the front of the tube. She had to constantly wipe her nose. My guess is while sleeping the snot was running the other direction, down the back of her throat. She started to get a little bit of a cough these last few days, and last night while trying to sleep she kept choking on the tube. She finally had to ask them to take it out. She likes to be cautious about removing the tube since she hates having it reinserted, but she just kept waking up choking.

The day got off to a slow start. Karen followed the same liquid diet for breakfast; on a liquid diet all meals are pretty much the same. The doctor who we had expected to argue talk with about moving up to solid foods didn't show up in the morning. We asked the nurse about it and she said that particular doctor usually visits in the afternoon instead of the morning. We were worried we wouldn't get a chance to order solid food for lunch, so we had the nurse contact the doctor to see if we could move up. We didn't really know if they'd OK it, but they did. And Karen got solid food for lunch: some kind of gluten free noodles, and some intentionally over cooked veggies.

The doctor stopped in to see us around 2pm. She asked Karen if she had any more bowel movements, and she had - earlier in the morning. Then she asked how the solid food went down and how Karen was feeling. And then told us she had already put the discharge through before stopping in to see us. We were both pretty surprised about this as everything had been moving so slowly this time. We were signing release papers by 2:30 and packed and on our way home by 3. When we got home we both fell asleep. What an exhausting visit to the hospital.

Clear Liquid Diet

This is just a quick post to say that we did pass the clamping test. They take a large plastic syringe and try to pull anything they can up through the tube just to see how much comes up. They've always gotten something back in the past, even when we've passed the test, so I'm not sure what the threshold is. But this time they got absolutely nothing.

They had previously told Karen even though she couldn't have any food or water by mouth, lozenges were ok. So I brought in some Ricola - the original and the honey herb - but I also snuck a Lemonhead into the bag since Karen really likes those. She worked on that during the second half of the clamping trial. If something is going to get your digestion going it's one of those. I credit the Lemonhead with the overwhelmingness of our success.

Karen's now allowed to have clear liquids. So she's had water, tea, broth, some strange but delicious off brand jello, cranberry juice, and Italian ice. She hasn't even had a hint of nausea, which she's typically gotten in the past just as a hint that we need to slow down. Hopefully we start soft foods tomorrow morning. No one has given us a time frame, but in our past experience they will keep us until she has another bowel movement. Assuming she's empty now that means the new food is working it's way through just fine. We hope to be heading home by at least Sunday.

Clamping Trial

Karen started to get real hungry last night around 1am. To her this meant her body was ready to eat again, and she wanted to be proactive about it. They have to unhook you temporarily from the suction if you want to go for a walk, sit in a chair outside of your hospital bed, or go to the bathroom. So after they clamped Karen for a bathroom break we went walking around for a while and came back to the room to rest in a chair, and then started the cycle over. Karen managed to stay unclamped for about two and half hours before she felt exhausted enough to get back into bed. A clamping trial is usually 3 hours, so she was ready with this news when the doctors came in to see us. They were happy, but told us we should still consider having a PEG tube inserted through Karen's neck for future occurances. Karen said, "not this time" and they agreed to a formal clamping trial.

They ordered an extended clamping trial, which is 6 hours long. We have only done this once before after a false start earlier in the year after her ostomy reversal, which was very traumatic on her intestines. Since the nurse had only reconnected Karen for a couple minutes before the doctors came around she decided to quickly disconnect Karen from the suction and count the earlier time towards the trial. So if everything goes well we'll be on clear liquids in a few hours. We're pretty confident it'll happen.

You Little Piece of...

Karen passed a very small amount of stool earlier. In the past this has been enough to get us on a clamping trial. That's where they clamp your NG tube and see if you get nauseous. If you do, then it's due to the pressure of your own digestive fluids building up again and this tells them things still aren't moving like they should be. This time it's not enough. It was suggested a clamping trial could still be a day or two off.

Our favorite doctor, the one who did the original surgery and watched over us in the hospital in the past, wasn't able to take us on this time for one reason or another. He did stop by "just socially" to say hi and offer some words of encouragement, which means a lot coming from him because he's one of the few doctors that's always given it to us straight and has never been one to dance around bad news. We have a different doctor who has taken the lead in Karen's care this time. So perhaps this doctor is just more conservative in her treatment of bowel obstructions compared to him.

The only other thing that comes to mind is the output from the NG tube. The output they are getting seems to be more than I remember in the past. There's no shortage of doctors around and I've asked what output volume would be a healthy amount, but no one seems to have a set amount. They just seem to be expecting "less." And the output doesn't seem to have changed much since the previous day. I'm not sure if the depth of tube placement matters in the amount of output, or if certain locations are more likely to catch more of her digestive/gastric fluids even when things are moving. But that is a possible issue.

Since this was a mid to high grade blockage maybe there's just more progress that needs to be made before the clamping trial. I'm just not sure how they are gauging progress. I'm a little surprised they haven't used more imaging to check on the obstruction. I guess we'll just have to wait and see what tomorrow brings.

Small Amount of Progress

In the past it's been difficult to tell exactly what caused the blockage, and with the ostomy even a bagel could do it. The doctors seem pretty certain that this time it's a kink, twist, or cancer growth obstructing the flow of the intestines. When we came in, nothing was getting through, so Karen had no gas either. However, Karen started passing gas again. This tells us something is now getting through, which means there's a good chance there's enough range of movement for things to open back up entirely if they haven't already. We're not in the clear yet, but it's certainly a good sign.

Karen did manage to get a lot more sleep last night. Today looks to be another repeat of yesterday; more waiting. But we've been getting a lot of walking in. Oh, and Karen got a quick shower this morning. So she's fairly comfortable. Still no abdominal pain or nausea. The only thing really bothering her right now is the NG tube. The problem there is it hurts more and more as time goes on. The pain begins to radiate outwards and is now starting to give her an ear ache. In the past it's even worked itself into a dull headache. She tried some of the pain medication they had prescribed earlier, but it didn't work for the kind of pain caused by the NG tube.

No Progress

There's been no progress with the blockage. Although her abdomen pain has completely dissipated. She didn't need any extra pain medication through the night and she's remained pain free throughout the day. Well, except for the irritation in her throat from the NG tube, but that's extremely minor compared to the abdominal pain she was in yesterday. She seems to be in good spirits.

She didn't sleep all that much last night. They gave her the steroid Dexamethasone in the evening to try and reduce the inflammation in her intestines. It can also make you feel energized, and kept her up until past midnight despite not sleeping the night before. (Today it was given in the morning.) When she did go to sleep, all the medications and vitals checks weren't lined up so she kept getting woken up every couple hours. Certain medications are prescribed with a time they must be given, and there are a bunch of different teams working with you, so the medication times don't always line up. But once we've been there a day or two they get everything adjusted pretty well. And since she's off the strong IV pain meds they don't have to take vitals every two hours anymore. So hopefully tonight will be better.

The doctors have been throwing around the term frozen abdomen. This is when your intestines gel into a solid mass, as opposed to how they normally are, free flowing like a bowl of spaghetti. This is usually caused by scar tissue or cancer. And while Karen has a lot of scar tissue from past surgeries, they say the major cause is most likely all of those little nodules in her abdomen growing and sticking to everything. This makes surgery a very complicated option. It'd be like trying to cut into a block of fruitcake without hitting any fruit. The risks can easily outweigh the benefits. To the point where it's not uncommon to simply insert a "venting tube" through the neck and into the stomach and send you home. This lets you suction your stomach anywhere, even at home. You can typically live another 25 to 30 days in the comfort of your home, rather than spending your last days in the hospital. They tell us this isn't necessarily what will happen this time, but it's the path Karen's on, and something that will likely be done in the future if it doesn't happen now.

They told us they like to wait three days to see if there is any improvement before "changing approaches." I asked for more specifics, like would they be inserting the tube at that time, but they just said they'd prefer to wait until those three days are up and then reevaluate the situation and decide what to do then. I can't tell if they are just trying to keep us positive and our minds off the alternative, or if they really aren't sure how close we are to this cold reality. We still have all of tomorrow for things to start moving on their own again, and my guess is if there's still no progress we won't hear any options until sometime Friday. The lack of progress has me worried, but we're both trying very hard to remain positive.

Back to the Waiting Game

The CT scan showed a moderate to high grade bowel obstruction with a visible transition point. The "visible transition point" just means they can pinpoint the exact spot of the blockage, which is very helpful if they have to go in to fix the blockage with surgery. Surgery would normally be considered at this point but due to all the abdominal surgeries Karen's had in the past, scar tissue is holding everything together and it'd be hard to get/cut through to the blockage. So, we're back to the old waiting game. Karen's been admitted and they found her a room. I imagine this will take a few days to work through.

They finally put an NG tube in her nose around 3pm. Based on past experiences I felt this should have been done much sooner. They were giving her very strong pain medication - hydromorphone (Dilaudid) - but it was barely helping at all. I even felt the nurse was suspicious of Karen's claims of pain, at least until the CT results came back. When she'd be hit with a wave of pain, it'd spike up into the 8 to 10 range, and would hover around a 5 in between. The amount of time in between those waves of pain has also increased significantly, from once every two to five minutes to once or twice an hour. And the although she's still hovering around a pain level of 4, the waves of pain are less severe. They were also giving her a lot of medication to help with nausea. It's been a couple hours now since she's had the NG tube in and her nausea has vanished completely.

I had mentioned an NG tube shortly after we were admitted, but Karen really hates having them shoved down her nose and asked me not to bring it up again. However, when it finally happened, the nurse did an excellent job inserting the tube. The process was pretty much pain free. By far the easiest NG tube Karen's ever had inserted. Hopefully this experience along with how much it seems to have helped will make her more comfortable with the idea of NG tubes in the future.

Another Obstruction?

Karen's back in ER again. This seems to be another intestinal obstruction, but it seems to be a lot more painful this time - either that or the nurse is just making a big deal about the pain meds. To my recollection it does seem like it's being given more frequently. This makes me a little concerned that this might be a much worse blockage than we've had in the past.

Karen had a bit of pain around 1 in the morning, but just enough to take naproxen (Aleve). She began to have some serious pain about 4 am, and an hour or two after that she became nauseous. We figured at this point there was probably some sort of blockage, but Karen wanted to wait and see if it would improve on it's own if she just went onto a liquid diet. We didn't get a chance to try it out because the pain became too much and we decided to go into ER. We arrived at Mayo Clinic Hospital a little after 9.

The way they usually check for a blockage is with a CT scan of the abdomen. While we got into a room very quickly, there was a very long delay in getting the CT scan - several hours. The contrast they make you drink before the CT scan has gotten things moving again for Karen at least once in the past, but due to her nausea they decided to skip it this time. We're still waiting on the results of the CT. It seems strange to me that they haven't put an NG tube in yet, this might be due to the long delay on the CT scan and the resulting CT scan review, but I believe it was something they have always done shortly after we've come in with a blockage. I guess they just aren't sure it's a blockage? Or maybe they aren't sure of what kind of blockage it is.