Now, my status has changed to “wound management” so I’m mostly left to my own devices during the day. The doctors come through once early to irrigate my neck and then again in the later afternoon. Other than that, 3 walks and tried not to nap too much. Worked on my portfolio for quite a bit, today. I don’t have to spend a lot of time on it day-to-day, but twice a year I re-evaluate and rebalance. Usually wait until the end of June, but decided this was close enough.
As far as the medical front, when they first put the drains into my neck and irrigated them, I would get water in my mouth when they pushed saline into the irrigation tubes. Then, the right side stopped doing that. Now, both sides seem healed enough that no water goes into my mouth on either side. I suspect they’ll want to do another barium swallow test (I swallow liquid barium and they watch on a fluoroscope to see if any leaks into my neck when I swallow) before sending me home, but that is yet to be confirmed by an actual doctor.
I’m hopeful (for the second week in a row) that I could be home by the weekend. Fingers crossed.
Busier day, today. Speech Therapist came by and helped me get started with the electrolarynx. I need a lot of practice, and am still reaching for the keyboard as my first reflex to communicate, but will work on that. You cannot really reproduce sibilants (s sounds). Count from one to ten…I get stuck at six, which has sibilants at both ends. And, it is difficult to reproduce hard letter sounds (d, k, p, t). Because of the bandages and wraps on my neck, I can’t press the unit to my neck. I have to use an adapter that is basically a straw that goes into my mouth…which also interferes with making words.
But, on the road to “talking” a little faster.
Both of my surgeons came by. The first was the one responsible for removing the tumor. He agrees that we are pretty much done for now. He passed on that he had consulted with my radiation oncologist and they are in consensus to not do additional radiation. I may do some additional chemo, but will see once I get discharged. He also said that it would probably do me some good to walk outside. I agreed, but reminded him that I was told that is against hospital rules.
The second surgeon, the one responsible for the grafts, flaps, and my continuing care for this visit also came by. Agreed that a walk would do me good and actually put it into my orders. I had offered that I could restrict to walking with a visitor. But, just heard that I can walk out on my own at any time to walk the park in front of the hospital. I just have to promise to come back. She also said that it is possible I could get out by the end of the week, but it entirely depends on whether my fistula had closed. Could be longer.
Sorry to cut this short, but I’m going to go for a walk.
Nothing much happens on most weekends up here and this weekend is a perfect example. The only thing qualifying as interesting is the 5 minutes I had to spend in the hall during the severe weather warning.
I believe I’ve mentioned that I have some tubes sticking out of each side of my neck that allows the doctors to irrigate the fistulas. Up to yesterday, when they irrigated the area, some of the saline went into my throat from both sides. Today, it seems that the right side has progressed enough on the healing front that none of the saline went into my throat. Still some leakage into my throat from the left side, though, and, of course, the left side is the one that was of more concern due to its proximity to a major vein.
I don’t see my regular doctors on the weekend, so no way to get an answer, but I am otherwise really ready to get out of here. They may want to continue to watch that left side until it closes enough to not leak all the way into my throat. They also might want to do another barium swallow study once that leak closes to ensure that the throat side has fully closed.
My to-do list of things I need to take care of when I get home has now grown to be longer than my list of comments and questions I have for the doctors (which is basically down to “When can I go home?”). And, those to-dos will take extra time because it will take me a week or two to get up to being hale enough to do very much at once. But, most of them involve driving somewhere and sitting, so should be able to manage that much.
I noticed that my watch (which is also an activity monitor) has a message that sleep data is unavailable. When I tapped to find out more, it said that I need to be wearing it for at least 4 hours while sleeping. Well, it would be nice if I could get more than 4 hours of sleep at night, but I think that isn’t going to happen until I get home, and even then the cat probably won’t allow it for a couple of nights. I try to take a nap during the day, but even that gets interrupted by vitals checks and routine rounds (and the occasional severe weather warning).
So, watching the remaining drizzle roll down the window, about to order dinner, considering pre-emptively packing my bag.
Before I get to the subject, more important news to start with. I had 3 square meals today.
- 2 eggs scrambled and pureed
- Cream of Wheat
- Orange Juice
- Pureed Beef
- Pureed Carrots
- Pureed Broccoli
- Pureed Mixed Berries
- Pureed Chicken
- Pureed Broccoli
- Mashed Potatoes
- Orange Sherbert
Everything went through my G-tube with minimal problems. I did have a couple of instances where I pushed the syringe too hard without holding it onto the tube hard enough spraying whatever I was eating at the time all over…but I have a bath towel over most of what was within the target zone, so not much actual mess.
Now, to the subject. When the residents came through this morning to check the drain tubes, they also put a compression bandage around my neck, pretty tightly (on direction of the surgeon). It felt weird all day, but when the surgeon came through this afternoon she immediatly commented on how swollen my face was. Seems the compression bandage was a bit too tight. I went and looked at myself in the bathroom mirror and I look like someone who just had all 4 wisdom teeth pulled.
She loosened the bandage a bit. Note sure if it was loosened enough. I think the swelling is down, some. We’ll see how it is in the morning when the residents come back. If it is still swollen, maybe a bit more loosening is in order. Of course, if it isn’t swollen I’ll have to somehow convince them to not make it so tight, again.
Meanwhile, I got my mail, my electrolarynx, and my beard trimmer. Sorted and threw away most of the mail. Played with the electrolarynx a bit (going to need to practice a lot, but more on that later). About to go spread a towel across the bathroom sink and get rid of as much of this hair that has accumulated on my face the past 3…nearly 4 weeks as I can.
Procedure went well, by all accounts. I now have 2 little red hoses coming out of each side of my neck so that the fistulas can be irrigated to keep them clean. Doctor indicated that I’d go home with them and do that myself. Residents did not have that understanding. I’ll let them sort that out.
Wednesday after it was too late to order food, they put me on a puree full diet, so I can put any food that will puree into the g-tube. But, they cut off all food before the procedure. Then, they forgot to turn it back on after the procedure. By the time we got the doctor to change the orders, it was again too late to order food.
This morning I had been without food for 36 hours and was pretty irritated about it. Pestered everyone until the residents arrived and mostly fixed things. I am NPO (which means I cannot take any food by mouth). But, as mentioned, can have pureed for the g-tube. My chart says NPO, but then says in the notes that I can do the puree. Nutritional services could not get past NPO so still resisted accepting a pureed food order. That finally got sorted out. I am suggesting that they put Puree in the main field and NPO in the notes (since no one seems to read the notes). I know better than to try to put food or drink in my mouth…I want to heal up so I can get out of this place.
I’m also connected to IV fluids, since I could not eat or drink yesterday. Waiting for those orders to change, too, so that I can walk around without having to drag the IV pump around behind me.
Today, my brother-in-law is bringing up all my mail (might have to make 2 trips) as well as the electrolarynx. I’m ready to start practicing with that. Tired of having to type out everything I want to say (and I never can get in everything I really want to say that way).
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.