Home Sweet Home

Well, we're finally out of there. They gave Karen some simethicone - you probably know it as gas x - and we just waited it out. They gave her the option of staying another night, but she was ready to go home.

SMILE and Grimace

While we were waiting on the release, 1:30 rolled around. Every Friday, from 1:30 pm to 2:30 pm, they play a BINGO-like game called SMILE. Instead of straight lines you have to make shapes; for example, a smile. Last time Karen won $12 in gift cards, this time she won $8 and I won $4.

Unfortunately, during this time Karen began having really bad abdominal pain. The two possibilities they are floating is either too much fiber, or gas issues. Either way, they seem to think it's related to eating food. It sounds like they want to hold onto her till 5 now to make sure it passes. Some of the nurses have been speculating that she won't get released till tomorrow now, but we haven't heard anything like that from the doctors. We're still planning on leaving.

Going Home

Karen is being released today at noon, but you know how the paperwork goes. She's on the maximum allowable Percocet dose, ibuprofen, Pyridium (for the bladder and urinary pain), and prilosec (to keep her stomach acid in check). They're going to prescribe her a nebulizer for home since they don't feel she would be able to use the rescue inhaler effectively with her diminished lung capacity.

She still gets up to a 5 out 10 on the pain scale from time to time, and she's having more pain around her stoma. The bladder still never drops below 200-250 ml or so, which seems to be an issue since the surgery. We saw increased urine output after switching switching pain meds, and Karen felt as if she were voiding more. But she still had quite a bit of pain, and shortly after posting yesterday, they did a bladder scan (using ultrasound) and found 243 ml in there. This caused quite a bit of emotional distress for her. It can get very painful and she was worried they weren't taking it serious enough. They've said since she's peeing frequently, and doesn't feel the urgency to pee afterwards, there's no need to be concerned. They've even gone as far as reversing their earlier recommendation to learn how to self catheterize, and are suggesting she just keeps doing what she's doing for a couple weeks and see if things improve on their own.

With all the excitement of leaving I almost forgot an important step in her recovery, solid foods. That was the last real hurdle before being dismissed. Karen had been building up to it for a while, but was a bit apprehensive after what happened last time. She started solid food yesterday with a late breakfast: a small bowl of cereal and an egg. They brought her food for lunch but she wasn't hungry yet and didn't want to push it. She ordered peanut butter and jelly with a side of peaches for dinner. They say her appetite will eventually return to normal. Breakfast today was the same, but with two eggs instead of one.

Soon

Yesterday Karen's diet went from clear liquids, to liquids, which is a bigger change than it sounds like. They also dropped the Fentanyl and tried out some different oral meds before ending up on percocet. Her pain level was tolerable enough to sleep, either that or the does was just high enough to knock her out. Either way, she got some sleep last night.

They say Karen should certainly be good to go home soon. We're hoping Friday. She's off the TPN now, and is cord, tube, and IV free. She's getting around a lot better and her voice is getting stronger after having had the NG tube out for a couple days. (If you're going to catch her in the hospital, now is probably the best time to do it.) That said, they need to do more bladder scans today; if she's still retaining 200 ml of urine or more, they want her to learn to self catheterize before being released. They say retaining that much urine can result in an infection. And, of course, she needs to try out solid foods at some point.

Moving Forward

Karen was doing well enough with her clear liquids that they removed the NG by yesterday evening. It's easier for her to talk with the NG tube out. It looks like she may be out as soon as Friday, but barring anymore setbacks, she should certainly be out by Monday.

After switching away from hydromorphone (Dilaudid) to Fentanyl, she seemed to have better luck emptying her bladder on her own. Apparently this is a potential problem with most of the stronger pain killers. She's still retaining 250 ml or so, and they say you feel like you need to go when you get above 300 to 350, but rather than doing the straight catheter every 3 to 4 hours, she opted to simply go to the bathroom every couple hours. So she didn't get much sleep, but this is progress.

More Catheter Trouble

It seems like Karen never gets two good days in a row. The catheter had to come out and go back in again, but not without several painful attempts to get working again. There's been issues with urine retention, even with the catheter in, since the original surgery on the 9th. Even the doctors say they haven't seen this before, as the catheter bypasses the sphincter entirely and drains directly from the bladder. We finally got to see a urologist who saw nothing wrong with any of the scans and just thinks it still needs more time. Which leaves us unsure if we should be frustrated that nothing is being done about it, or comforted they don't think they need to go in and fix the bladder. This is her 5th catheter and once it stops working again, they will teach her to use straight catheters, which are usually disposable or single-use products. Hopefully this is temporary, but it makes Karen worried things might not change.

The night nurse decided it was a good idea to hook the NG tube back to the vacuum after the hydromorphone made Karen nauseous. The vent on vacuum whistled all night which combine with all the pain from the catheter problems kept Karen up all night. Her heart rate didn't drop below 90 again, but has hanging around 100 this morning. Still, with the heart rate going down, and in an effort to make her more comfortable, the EKG has been removed.

In the morning, the doctors re-clamped the NG tube and want to have it out tonight or tomorrow morning. She still complains about it, but I think she's getting more comfortable with it. She says it's so painful going in, she doesn't want it out unless they're sure she won't need it again. She's on clear fluids again, and is happily sipping away at a Ginger Ale.

Sleep!

Finally another night with good sleep. It's been almost a week, but like the last time she slept well, her heart rate slowed down to a more normal speed. It slowed to below 90 this time. It seems the sleep helps the most with that, but maybe it's the other way around and her heart rate dropping lets her sleep better.

I think she's finally getting use to the NG tube, she isn't constantly spraying her throat with chloraseptic and I don't see her wincing when we walk and the hose wiggles. Speaking of which, her desire to walk is coming back and we're walking more again.

They still seem concerned about her increasing tolerance to the hydromorphone. They raised the possibility of oral ibuprofen again, but that requires stopping the NG vacuum for 30 to 60 minutes, which isn't much longer than the walks we've been doing. So they feel at this point, maybe she doesn't need it at all anymore. At some point they're going to clamp it for 4 hours and see how things go.