The surgeon came by and looked at the results of the CT scan. While the right side leak is bigger, the left side leak goes closer to a major vein. So, tomorrow she’s going to put me under and put in a drain. She’ll also check to see if there is anything she should do to close up the right side, some, but she’s really not too worried about that as long as I can keep it irrigated.
As far as getting out of here, that means that I’ve got at least “several days.” My experience has been that they never let me go on the weekend, so I expect to be here until at least Monday.
Good news on the talking front, though. After having to use my laptop and phone to type out what I want to say for 3 weeks, my electrolarynx will be delivered to my house, tomorrow. Hopefully, someone can rush it over here. I am eager to be able to start training on it so that I can communicate faster.
And, good news on the food front. The surgeon has OK’d moving to a pureed diet, which is basically what I do at home. Too late to get more robust food, tonight, so I’m subsisting on cream of rice, cream of tomato soup, vanilla pudding, and a carton of milk all shaken up so that it is thin enough to go into the G-tube. Only 540 calories, though. I’ve got my eye on the pot roast for lunch tomorrow with green beans and squash. Ok, now I’ve made myself drool…gotta go clean up.
The residents came through and put a hose in my neck so that they could keep it irrigated and clean. They are also going to do a CT scan to see how close the leak is to the jugular. Then, I have to stay here until it has substantially resolved. Their estimate is a week. Yikes. I’m going to start putting the “crazy” into “stir crazy.”
Meanwhile, waiting on my oatmeal lunch and pushing them to let me order pureed anything from the menu to put into the g-tube. Right now I haven’t eaten since 6 pm last night and am starting to get a bit hangry.
Ok, the swallow study shows some definite leaking. After the test, they were huddled around a monitor trying to discern what they were seeing. Meanwhile, I could feel that my neck was wet on the right side. So, I got their attention and they came over…yep, a leak on the right side. And, imaging also shows a smaller leak on the left side.
I know that means I still cannot eat by mouth. What I don’t know, yet, is what ramifications that has on my plans to be out of here, today. Stay tuned.
Early morning rounds by the residents: complete an esophagram to see if there is any saiiva leaking from my mouth/throat into my neck (fistula). Depending on those results, my admitting doctor will decide if I go home or not. But, other than knowing that that test will happen today, I have no idea what time. So, here I wait, again .
Meanwhile, gut issues are better. No more water jets! Still lots of borborygmus and a little bloat, but much better than the last couple of days.
They expect to take at least half of my 60 chest staples out, today. They might take them all out…they’ve been in for 11 days. And, they might upgrade me to pureed foods (which is what I eat at home while on the g-tube).
So, right now I’m up, dressed, hungry (cannot eat until the test), and ready to get out of here. Let’s get this show on the road!
This will be good news, meh news, bad news, in that order.
Good news is that they have OK’d me to have anything on the menu that will go into the tube. I convinced them that oatmeal would go if I diluted it and pushed it with the turkey baster, so they added that to my OK list. So, off of formula and switching to soup, oatmeal, and whatever other liquids they’ve got. I really think that will do the most in resolving my digestion issues.
Meh news? I ordered an electrolarynx. Then, the company contacted me and said that it would take 2-3 weeks for the insurance company to approve it. Or, I could pay out of pocket and hope for re-imbursement. So, I opted to pay out of pocket. Hopefully, I’ll have it in my hands before the weekend.
Bad news: No release, today. Tomorrow almost certainly, though. So, one more night in prison, but at least now my cot includes three hots.
The only thing keeping me here, now, is the digestive issue. They don’t want to send me home having to go every 2 hours. So, yesterday they tried, unfortunately, two things at once. They both gave me a large (8 mg) dose of Imodium and changed my nutrition formula. The result? Cramping, gas, mild nausea.
So, which is the culprit, the Imodium or the new formula? No way to know for sure (my vote goes to Imodium, though).
Overnight, the cramping eased substantially. Still a lot of borborygmi, but I can go 5-7 hours between trips. But, each trip is very low volume, so hard to say how much has improved. I feel right now as though I have both constipation and diarrhea at the same time.
I’m going to advocate that up to 7 hours between trips is enough to send me home, but I’m doubting that I’ll get agreement from the doctors. A couple of hours before they round, so crossing my fingers that I’ll have some sudden progress between now and then.
After reconsulting with the team who repaired the thoracic duct, who assured him that I was out of any danger of springing a new leak, my primary surgeon has relented and I am being switched over to “normal” formula starting with lunch. If things improve, then they should release me tomorrow. I told them not to expect things to go back to normal, just for the water jets to switch to “normal” diarrhea. The only thing that is going to fix that will be going back to real food, which I should be able to do as soon as I get home. The nutritionist came by while I was typing this, and we discussed alternatives. So, lunch is on the way. I suggested maybe I’d also try some normal broth (not boiling). She was tentative, so maybe I’ll hold off until this evening.
On a related note, this stuff I’ve been on has now started to generate an incredible amount of gas. I passed a continuous stream for 10 seconds. At first I was startled. By the time it was over I was quite impressed. Took me back to my high-school trumpet playing days.
I also lost 26 little pieces of metal. They removed the remaining staples from my right thigh. Just 60 staples in my chest, but those come out in an office visit.
I have not had a solid 8 hours of sleep (outside of being sedated) for 22 days, now. My best night was probably 5 hours of interrupted sleep. I am so looking forward to sinking into my own sheets and sleeping for as long as the cat will allow.
I’ve started making a list of all the things that have been slipping by that I need to take care of:
- Sort through all my mail
- Expired credit card (replacement might be in a big pile of mail at the house)
- Car inspection and registration
- Eye exam and new glasses
- House and yard stuff (although one of my sisters has taken care of the inside of the house for me and I have a guy that does the yard, some things I have to take care of myself)
All light-duty things I can take care of while still not released to go back to the office. Hoping that release can come in a week or so. I’ve not checked in work-wise (other than personal messages to co-workers) since May 20. I don’t even want to think about what might be piled up there…so I won’t (officially).
First rounds came through. I started a couple of weeks ago with 6 wound drains. Now, I’m down to two. Will probably go home with at least one.
The formula I am on has virtually no bulk. And, my digestive system doesn’t handle it well. I have to stay pretty close to a bathroom to avert disaster. This also is making it difficult to manage my electrolytes. Primarily, magnesium, potassium, and sodium. I’ve been getting an IV drip of magnesium in addition to oral supplements. Drinking sports drink for the potassium, and I added salt to the sports drink to provide additional sodium. But the real solution is going to be stopping the runs.
One doctor thinks I could move off the formula soon. The other wants me on it for at least a month. I think you know which doctor I like better right now. Oh, just a second, quick bio break then I’ll resume typing. <sigh>
I spent a while yesterday working on a recipe for a real-food blend that could add some bulk without adding fat. The current iteration is a probably overly complex (16 ingredients) mix of fruit, beans, vegetables, and is about 500 mL and nearly 300 calories. I think I could dilute it to a single 1 Liter “meal”. Possible that adding this bulk once per day could help stem the tide, even on this formula, but I can’t try it until I get home.
Meanwhile, they don’t want to send me home with it this bad. I’m on the maximum dose of Immodium and an injection that is supposed to help (neither has any noticeable effect). I am also taking 3 fiber packs / day along with the feeds. Other than that, they could likely release me today or tomorrow. Now, TBD.
I noticed that no one who visited would sit on the couch next to me. Then I started counting backwards and realized I haven’t taken a real shower in 20 days. Coincidence?
I have very little sense of smell, since air isn’t drawn through my mouth or nose. So I have no idea what I smelled like. But, last night I took my first shower since May 20th. Felt great. Hopefully I smell better, too.
This morning, got up, made my own breakfast (shake 510 ml water with two packets of powdered formula). Again my walking, steadiness, blood pressure are all better and better. I’d put those factors at 80-90%. Strength and endurance are both shot, but I’ll slowly start working on those as I am able. I have a stationary bicycle at the house, so will start on it at very low tension to start building up some aerobic capacity as soon as I get home.
I still have a bandage on my left thigh where the skin graft came from, 20 or so staples on my right thigh from the first failed donor site, and more staples than I can count in my left upper chest where my pectoral was rotated up to my neck, so those will limit me in range of motion and ability to push very hard. But, I expect the staples to come out of my right thigh this week and the bandage on the right thigh doesn’t really affect range-of-motion, so I think getting the legs moving more is do-able.
Not much happens on the weekends, here. No physical, occupational, or speech therapy, minimal doctor interaction (although someone usually comes by before now). Pretty much left to my own devices. So, time to eat breakfast and drag some of those devices out of my suitcase.
One other nugget of information I got regarding the removed tumor was that it was odd in its location and rare in its presentation. While the original tumor was categorized as a squamous cell carcinoma, this time the biopsy came back as a neuroendocrine squamous cell carcinoma. The case reports I’ve read so far show this type as fairly responsive to some chemo protocols, but have not gotten far enough into the process to know what treatment might be necessary.
Anyway, a few more long words to learn.