Under the Knife Again

I'm having surgery again next week, my 16th. At least this time it does not involve shaving my head. It does however involve a lot of risk, a big incision, general anesthetic, and around a week in the hospital.

I'm also having my first mammogram and an ultrasound because of what we hope is just a small thing. I'm nervous but not much I can do about it. So, first things first, one day at a time.

Long week

Is this week over yet?

Monday Aunt Cyntitha died.

Tuesday my grandma and Aunt Debbie arrived to Phoenix a few hours late to say their good-byes.

Wednesday I had an unexpected endoscopy on my nose and throat, a hearing exam, and am being scheduled for an ENG.

While my nose, throat, and upper mouth were still numb and frozen, Grandma B and Debbie arrived to visit for the day. I refused to rest, though they kept saying I could. I caught myself forcing my eyes open several times. I miss them already.

I just received a call that Grandma L fell on Sunday. She was weedwacking out back and fell while on the patio, breaking her hip. She had hip replacement surgery Tuesday; she couldn't maintain her oxygen post-op and was in ICU until yesterday. She is very weak and today they are doing a blood transfusion.

They want to transfer her to the hospital where I worked, so she can get the best in-patient rehab. She and Grandpa L are both refusing. Grandpa is in poor shape himself due to his fall out of the tree and only in the last 2 months has begun to walk again, if you call what he does walking. He sleeps in a recliner on the front patio. My uncle is moving into the front room next to the patio so he can hear them, as he is putting a twin bed on the patio for Grandma. That way they're both in the same place.

I am so FRUSTRATED that they are refusing the treatment she needs. The survival rate for the elderly is less than 5 years due to poor healing. Her chances will be much lower with her refusal. (I ran the THR/TKR programs--total hip and total knee replacements, and am all too familiar with this situation.) She is screwing herself over.

I know they're just being as stubborn as I am and I guess I can't really blame them, they're responsible for themselves and can make their own decisions, but I want the best for them.

Surgery update

Hello!

I just wanted to check in. I was discharged this evening and am back at the hotel. D** just left to start her drive home. She is so sweet and funny.

The surgeons came by several times at the hospital today and during the last visit they recorded a brief interview with me on camera because of having great results for such an oddball complicated case.

Pre-op they felt because of the vascular impact of the problem that I might have had an extra muscle cutting off blood supply. Instead, they discovered I had the one muscle like most people but it was actually twice the size it should have been. So they cut that extra section out.

There was also a 3 inch x 1 inch chunk of scar tissue squashing the nerves and artery. They said it wasn't scar tissue like from a cut, but a thick, solid, dense material. They usually just see that in patients with major trauma or athletics. They cut that out too.

The other oddity was with my nerves. Instead of the 3 major nerves being horizontal like they are supposed to be, they were pointing upward and were stuck along the spine and wound through a couple of bony areas. They moved them to the proper location.

I ran into some trouble with urinary issues pretty quickly. I was drinking a lot of cranberry juice like I always do in-patient, trying to keep hydrated and flush my system of the anesthetic, but for the life of me I couldn't pee. I had to get out of bed every hour for 6 hours in a row overnight, drag my pole of bags with me (potassium, antibiotics, and Dilaudid drips), and try to go. I'd stay in there 15 minutes a trip and only went 4-5 drops and I was straining and cramping with it.

This morning I finally said something to my nurse and she brought in an ultrasound and discovered I was definitely full of pee--as in 960 cc's. I learned from my testing before last year's bladder surgery that my capacity is approximately 300. It's no wonder I was in so much pain down there and my abdomen was rock hard. They woke one of my surgeons up (4 a.m.) for permission to cath empty me. About 20 minutes and 2 bottles later, I was empty and relieved. I was concerned as well since the doctor said if that happened again I wouldn't be discharged. Thankfully the next time I went was normal. HUGE relief.

I have not seen the incision. DH says it looks great and that it runs about vertical, from the clavicle upward. I got the drain out of it this morning so it's still very well packed. I can shower tomorrow but need to re-gauze it immediately.

Stitches get pulled in 12 days.

From the time I was in recovery, people were commenting that I had pink in my face. They don't even know me but saw me in pre-op and they could see the difference. Guess that's what happens when blood supply comes back, LOL.

DH keeps touching my hand, shocked that it is warm, not an ice cube any more. I can feel when I move my hand and arm, people touching me, you name it. It's not ghostly pale any more either and there have been no shooting pains. It's achy but they said that's normal since they were moving nerves around.

We're going to head back to AZ Sunday. I'm a little nervous, not wanting anyone bumping into me at the airport and such, always a concern when I fly post-op.

I'm really tired, drained. Hopefully I'll sleep on the flights with the help of narcotics! And hopefully no more missed flights.

Recovery room, quite red instead of my usual whitish-green appearance.


In my room at the hospital.


My baby sister.


Incision.

Caio, Arizona!

We're flying out tomorrow for my surgery trip. We don't get in until nearly midnight. I'm a little concerned about the weather on both sides but figure it'll work out. Always does, one way or another, somehow. It's been raining here for days, causing flood warnings in several areas, etc.

I'm fairly well behind in posting this week. I've been doing the usual around here to prepare for leaving the kids behind for my medical trips. We took over Costco and stocked up the house; hopefully it'll make life a touch easier for J. Emergency forms, consents to treat, schedule of daily activities, all done! J. helped a ton with laundry yesterday so there's only one load left. She went to the garage and brought in the winter clothes. For MD weather we needed a lot more than what we had out for here! Brrr!

My other great time constraint is the Babette blanket. I won't get to do the border before I leave but I am determined to finish sewing on every last one of those squares! It is turning out really neat-looking. I only have 1 1/2 panels left to stitch up. Much of today will be spent on those remaining squares.

I'm antsy about the surgery but it needs done.

My son had his MRI Thursday. He was upbeat on the way there, thinking it'd be like playing astronaut, so no sedation. He got on the table, they showed him the mask, and the tears started. None of us could get anywhere with him. So off we went to a room, signed the consent for the pentabarbitol IV sedation, and they told him about the needle. It went from tears to bawling and crying, "I just want to go home!" A volunteer gave him an adorable handmade dinosaur to hold (he named it Frank!). After a few minutes he said he wanted to back to the machine and do it--no IV. Round 2 and he was awesome. He walked in there, hopped on up, got in there, and was still the whole time. He said, "I was scared of it before, but I'm not scared now! That's easy!" He was so funny after that. Oh and thankfully the spacer didn't cause the artifact they were concerned about on the imaging. The results should be in Monday or somewhere around there.

See you when I get back (or can handle typing after going back to the hotel post-surgery)! Cheers--here's to hoping for a pulse in my arm after surgery! It would be cool to have one finally, haha!

Oh if you get a chance and are willing, would you mind voting for my blog using the black box toward the right of the page? The contest ended a couple months ago but has started over again. So if you voted quite awhile back, your vote is gone now. I really appreciate it! There is no actual "award" but the more nominations it receives, the more views it will get because it will be toward the top of the health blogs list, the more people will (hopefully) read some of the informative links on the right side of my page, the more knowledge and understanding will be out there on these conditions!

Since I'll miss you this week, Happy St. Niklaus Nacht on the 5th!

Today's cardiothoracic appointment

I got put in a holding pattern. He's afraid to do anything because of how high the chances are of complications with the Ehlers-Danlos. in the mean time, he wants a strengthening program--which he knows can't be done as I permanently can't lift more than 3 pounds. and wants me to learn to sleep in a different position because I'm killing this artery--but knows it took me the last year to learn this one. he really doesn't have a grasp of the CM/EDS impacts, other than EDS has its risks and it seems to be scaring him off.

So I'm supposed to build up strength (but wait DON'T do that!) and sleep differently (but oh you can't so go ahead and finish off that artery and lose your arm) so see you in three months. He admitted he's a heart guy, not a "world expert" in thoracic issues. He said he'd support getting another opinion, particularly a doctor in Denver, never told me his name as I was just floored and didn't think to ask, said he'd have no problem sending me there.

My Pain Man had called one night last week and said he and the other doctors in the practice were talking about me and really want me to see this other doctor--he IS a thoracic outlet expert. He lives in Baltimore but has an office here in Arizona, comes here about every 6 weeks. They're getting me in to see him on the guy's next trip here. Dr...Dellon? Pain man gave me Dellon's website and they had all these books they made on stuff, and there was one completely on thoracic outlet, so I linked to it.

Today just didn't go at all like I thought since he had been planning surgery, thought I'd be getting a plan of action and date today. Here, for once, I have a FIXABLE problem (like that has ever happened before???) and they run away, run away.

It's not the end of the world. Maybe the end of my arm, but maybe I'm just supposed to go bit by bit??? I don't know.