Main doctor in charge of this round of care came through with depressing news. Seems he wants me on this formula for at least a month. In addition to being expen$ive and not covered by insurance, there are those other side effects I’ll have to deal with. On a brighter note, the reason it was running for 3 hours at a time was because most patients aren’t mobile, so running it slow didn’t matter. The pump at maximum speed would still take 90 minutes, so I’ll just use a big turkey baster to put it in as fast as i want.
Got the O2 sensor on my ear, so I can type and practice guitar more easily. But, it is going to have a hard time staying on if I’m not careful about holding the cord when I move around. Going to get it pinned to my gown so that it will stay in place better.
Anyway, that is it for today. Have a great weekend.
They are keeping me on my bag feed formula for a few more days. The contents are called Tolerex, but I don’t particularly tolerate it. Every day is like the day before a colonoscopy. But, they want to keep me on a 100% fat-free diet until they are sure that the rest of my lymph system has accommodated the new chyle flow. Instead of dumping into my superior vena cava, much of it will move through other smaller feeders into other veins. Adding any fat to my diet would increase the flow. I understand all that, but my dreams last night were all of eating.
Another annoyance is that they have ordered this formula to go in at 200 mL / Hour. Each meal is 600 mL, or 3 hours. 3 meals a day…I have to stay hooked up to the food pump for 9 of my waking hours per day. The doctor is going to see if they can safely increase the flow rate for that, at least. Hooking me to the pole makes me very disinclined to move around, because I have to drag the pole around with me.
In addition to the bag feed, I asked if I could add 0 sugar Gatorade, Propel, or similar to help with hydration and electrolytes (they have to keep giving me supplements). All have agreed, so if anyone is heading this way, that would be the perfect gift. Probably not one of the red flavors…don’t want them to think I have internal bleeding.
The hospital uses a color-coded system for patient wear. For the last three weeks, I’ve been wearing a yellow gown and yellow socks. That means that I could not leave my bed or chair without first calling for help, and I was not allowed to walk unassisted. Which was OK. For the most part, there is no way I could have walked around unassisted.
Yesterday I felt good enough that I convinced them to let me sit in the chair without the alarm turned on so that I could stand up every once and a while, then sit back down. I promised not to walk around on my own. After occupational and physical therapy, today, they said I could switch to a green gown. With a green gown, I’m free to roam at will.
I’m still a little shaky on my feet, but steady enough. And, I’m self-aware enough to know when to back off or ask for help. I’ve basically been flat on my back for 3 weeks and my blood chemistry is still all over the place. Hoping that I can get to a more nutritious formula, tomorrow, which will help with that. I know not to expect to be at 100% immediately, but I’ll settle for 75% for now and build up from there.
Two of the several groups of doctors that are involved in my care have been by this morning and all agree that the procedure yesterday was a success. I went from draining 100 mL/hour from my chest to about 1 mL/hour (same as is coming out of my leg drain, which they might remove, today). No more need for continuous IV fluids, and I should be able to start the transition off of formula to more whole food. The formula I’ve been on has been necessary, but every day has been like the day before a colonoscopy as far as going to the bathroom is concerned. Losing a lot of water that way, too.
Some of the milestones to going home include:
- Closely monitor the leak for 24 hours more to be certain it is resolved.
- Let the neck graft heal for another 48 hours, then start to remove some of the dressings.
- Increase physical activity. Now that I’m not losing all those fluids, I should be able to start to tolerate more activity.
- Transition to a more normal diet (won’t be 100% when I go home, but should be several steps up from this current formula).
If no other complications or set backs, looking at the middle of next week. That will be very close to a full month of incarceration.
All night last night I was draining about 100 mL / hour of chyle from the leak. That is 2 liters/day, which made keeping my hydration and electrolytes right pretty much impossible. So, this morning I was quite ready to get this procedure going. 7 AM my transport arrived (person with a different gurney for me to ride down on). No sooner had we started down the hall than she had a medical emergency of her own…they had to take her to the ER and call for another person to take me downstairs. Hoping she’s doing well, now.
Arrived at pre-op late, but still an hour before the procedure itself was scheduled, so no impact to starting on time. Signed all the consents, they wheeled me to the OR, then gave me some of the good stuff. The next thing I knew it was 1pm and they were telling me that they found and repaired the leak. Muted woo hoo!. Only muted because I also woke up with a full blown migraine. About an hour after I got back to my room they let me take the migraine med I had with me. Then, I slept the rest of the headache off this afternoon.
Woke up and the drain was full. Dang. But, that seems to just have been some fluid that had been retained in my chest cavity. After emptying it and waiting another3 hours, there might be 10 mL drainage. So, really good news. Back to normal rehabilitation, tomorrow.
And tomorrow I’ll get one. Expect to go to surgery for the Embolization procedure early, then they will either knock me out or at least sedate me so that I am comfortable. The procedure takes a long time, most of that time spent waiting for the dye to go through. We are talking 4-6 hours. So, I’ll ask for a nice comfortable pillow to go with my sedation and try to catch up on all the sleep I’ve been missing.
So, I’ve read a bit more about the condition and procedure. The condition is serious but generally treatable through either natural healing or intervention. Mine seems to be big enough that there is concern that it won’t heal on its own. So, surgeons are discussing a Chyle Leak Embolization (I said cauterization in the previous post, that was incorrect). Basically, they give me some sleepy juice, then inject some dye into my lymph system and watch it under x-ray to see the flow of the chyle. Eventually, the dye will get to the point of leakage, identifying exactly where the issue lies. They then inject a glue (super glue) to seal the leak.
All that takes quite some time and might have to be done as a couple of separate procedures. They will discuss the plan, tomorrow, then expect to do the first (and maybe only) procedure on Wednesday. Meanwhile, today I feel pretty good. Sitting in a chair typing this and watching blah blah blah on TV.
Friday I was up and about with no big issue prior to Saturday’s surgery. Saturday morning, though, I did have a couple of near black-outs before surgery when I got up. It passed, but had a few unstable seconds. Surgery went fine, as I’ve already reported, and I expected yesterday to be up and about in the afternoon. But, instead, throughout the day I got more and more unable to raise up without greying out. Continuously bugged the nurse. Got to where anything other than laying flat was off the table.
But, around 6pm they got more aggressive about putting in fluids and things started to get better. Got up briefly twice with no problem and I feel like I’m ready for a good day.
My most limiting issue right now is a chyle leak (a leak in my lymphatic system that allows lymph fluid to seep out of my neck). That will keep me in the hospital until it resolves. I might have another small cauterization procedure to get it to close up faster, that is still being studied. Sooner the better as far as I’m concerned. I’m ready for PT, OT, SLP and whatever else they can do to get me up and keep me moving today.
Surgery started at noon, yesterday. Not sure how long it lasted (they expected 3 or 4 hours). I know from memory flashes that I was back in my room that evening, but don’t have full memories until about 11 pm. Had bad neck pain, so took Oxycodone and Laudanum (tincture of opium), which I am sure contributed to the memory wipe. But, it did take care of the level 7 pain.
Blood pressure is quite low, likely from dehydration. They gave me a liter by IV and now will be getting some more into my g-tube. It is up, some, but not enough that I wouldn’t faint if I tried to stand up, so hanging out in the bed this morning. Should be safe to move to a chair this afternoon.
All the doctors are saying that this second try looks very good. Its less than 24 hours out from the new graft, but the original graft had issues from the first hour. Nothing in that part of my neck hurts. The pain I had yesterday is tendonitis from being moved into awkward positions for an extended time during surgery. If you feel the back of your neck, those two taut bands that run from your back to your head are the tendons that were screaming in pain.
So, lazing away another Sunday afternoon, watching some Amazon Prime shows and trying not to nap so that I’ll sleep better, tonight.
Surgery tomorrow, expected to be at around 11:30 AM. This surgery will be simpler. So, why not this one to begin with? The cosmetic and functional results will be worse. Essentially (as far as I understand it), they will partially remove my left pectoral majoris, leaving most of the major blood vessels connected. They will then rotate this up and attach it under my neck. Since less plumbing to deal with, it should not have the blood flow issues the first flap has had. No leeches. Might even get to skip going back to ICU for recovery, but that will depend on a lot of unknowns.
Cosmetic and functional issues after will include some or all of:
- Simple cosmetics.
- Upper left side weakness (since there will be no upper left pectoral muscle)
- Unexpected movement. Since the brain will think those nerves are still connected into my chest, if I do something that would normally cause my left pec to flex, my neck could move, instead. They’ll probably try to sever nerves to minimize this.
Accessory issues can include:
- Need for turtlenecks to come back into style.
- Increased need for bandana collection.
Wish they could just wheel me in, now, and get it going. 16 hours of dwelling on this can’t be good.