I’ll finish up the story I left off with in the last post, re: the impromptu show-and-tell. We were at Rye Playland and I needed to take a break. We walked over to a bench so that I could sit down and rest. Ben took the opportunity to take a bathroom break. About 2 minutes after I sat down, a little girl (Chloe), maybe 6 or 7 years old, comes over to me and asks if she could ask me a question. I said, “Sure!” She then proceeds to ask what happened to me. I’ll retell our conversation below as if it were a script to a TV show or movie…
Me: I was in a train accident…
Chloe: You were ON the train??
Me: No…I was hit by the train…
Chloe: (With her eyes wide open) You were hit by the train?? Why didn’t you just run?!?
Me: I couldn’t. I fainted and then fell onto the tracks and then the train hit me…
Chloe: So, you lost your legs and now these help you (pointing to my prosthesis) walk?
Me: Yup!
Chloe: Do they hurt?
Me: Nope! But it takes a lot of work to use them so sometimes I need to sit down and take a rest, like I’m doing now.
At about now, her grandpa, 2 sisters, and cousin showed up! Her grandpa interjected and apologized for all her questions and curiosity and asked if it was ok. I said it was totally fine, better that she be curious than scared. Chloe introduces her sisters and cousin and then proceeds with her questions.
She then asked if she could touch my right prosthetic. Of course, I said yes. This was followed by the rest of the kids asking if they could touch as well. And once again, of course it was ok. I then told them that that leg has a computer in it. Their eyes lit up and they asked me where it was and if they could see and touch.
Chloe: But, you still have your feet, right?
Me: No…I don’t.
Chloe: So, what’s that then? (Pointing to the foot shell)
Me: It’s just a cover. You know how sometimes stores have the fake people, mannequins, with the clothes on in the window? My foot is kind of like that.
Chloe: Can we see?
Me: Sure!
I take my sneaker off and then my sock, so they can see the foot shell.
Chloe: Oh! It looks like my foot! Can we touch it?
Me: Sure!
Chloe and group: Ooh! It feels like a real foot!
Chloe then sits down on the grass, removes her sneaker and sock to expose her foot and says, “It looks like my foot!” To which her grandpa says, “Put that stinky foot away!” To which I say to Chloe and the kids, “That’s one thing I don’t have to worry about anymore…stinky feet!” They then ask me why the 2 prosthesis look different. I tell them it’s because one leg is shorter than the other and that the shorter one needs more help so that’s why it’s different. I pointed to show them how high the right one started. They asked if they could see. That one I said no to…didn’t think I needed to be flashing my undies to the people at Rye Playland and all. But they had a couple of more questions about that leg, so I told them that I would take the cover off so they could see. But I warned them that I had to do something with the leg so that I could take the cover off, and told them don’t be scared. They all went, “We won’t!”. So, I turned my knee/leg “upside down”…they were all wide-eyed, but not scared. Chloe sat back down on the grass and said, “Wait, I think I can do that too!”..and proceeded to try. *Adorable* They looked, touched, and then went over to the left prosthesis. I explained that the left one had a hidden button that I push so that I can take it off. They asked if I could take it off so they could see. I warned them again not to be scared…since there’s a pin/screw at the end of my liner. I took off the left prosthesis and then then put it back on. Chloe then asked if she could try to push the button and take the prosthesis off. This girl…love her. I said yes and then she “unclicked” my left prosthesis and took it off! Then she asked if she could hold it. So there she was…holding my left prosthesis by the shoe in her hands. Then the rest of the kids asked if it was heavy and if they could try holding it. And so…it got passed around. I mean….could they be any cuter?!? Then their grandma showed up and then the show-and-tell began to conclude. It was so nice to answer all their questions and show them my prosthesis. It was my pleasure to teach them about my prosthesis. I hope I was a good teacher/presenter for them and that they walked away asking more questions! I certainly didn’t start that day expecting to take off my prosthesis and having it passed around at Rye Playland…And I’m sure they didn’t think they’d be passing a prosthesis around!
No smooth segue into my next topic…I had my 14th surgery to date on Wednesday, 9/16/15. 14th surgery and 4th hospital, in less than 2 years. Fun times.
So, lets start by saying I was duped. Well, sort of, but not really. Hah. When I first scheduled this surgery and spoke to the doctor about what would be done, we had talked about anesthesia and he told me that he wouldn’t need to put me completely out. I took this to mean something along the lines of…I’d be awake, maybe not coherent, but awake, and numb in my leg and there would be a “curtain” up so I couldn’t see what was happening. Wrong. Completely out means you’re under full anesthesia and they intubate you with a breathing tube because you’re not breathing on your own. So, I wasn’t completely out because I was under full anesthesia but still breathing on my own. I guess that’s better…but I was completely unaware of the fact that in all the 13 prior surgeries, I was completely out.
With that being said, this surgery took about 2 hours. The tentative “plan” was that surgery would take 1.5-2 hours and then I’d be in recovery for 2-3 hours, and then I’d go home. Wrong again. I woke up in the recovery room and I was a little groggy..ok…to be expected. As I start to come to a little more, the nurse asks if I’m in any pain. I am. We go through the usual routine..1-10, what number is your pain? 5-6. She gave me some pain medication and then told me about the JP drain I had in my leg. Ugh…what?!?.
[A Jackson-Pratt Drain (also called a JP Drain) is a closed-suction medical device that is commonly used as a post-operative drain for collecting bodily fluids from surgical sites. The device consists of an internal drain connected to a grenade-shaped bulb via plastic tubing. The flexible bulb has a plug that can be opened to pour off collected fluid. Each time fluid is removed, the patient, caregiver or healthcare provider squeezes the air out of the bulb and replaces the plug before releasing the bulb. The resulting vacuum creates suction in the drainage tubing, which gradually draws fluid from the surgical site into the bulb. The bulb may be repeatedly opened to remove the collected fluid and squeezed again to restore suction. It is best to empty drains before they are more than half full to avoid the discomfort of the weight of the drain pulling on the internal tubing]
Luckily, I knew what it was because I had a JP drain in my left leg back when I was in Bellevue, but I wasn’t expecting to have one inserted into me after this surgery. So, knew what it was but caught off guard that I had one in me. Then Ben came in and told me the doc said that surgery went well. He said the doc said they found a 3-4 inch suture in one of the spots they operated on and removed it. Of course they did.
At this point the pain meds had kicked in and I was feeling a little better…but not for long. After coming out of surgery/anesthesia, I was REALLY thirsty and REALLY hungry, but you’re only allowed to start off with ice chips, then move to water, then jello..and only when they deem it ok, you’re allowed to start having real food. I never got to the real food…I started with the ice chips and quickly moved to drinking water. Then, my head started to hurt. It wasn’t bad at first. The nurse gave me some Tylenol. Then, I felt nauseous and started to get the thick spit in my mouth. Never a good thing. I grabbed the vomit tray and 5 seconds later…PUKE…water puke…since I hadn’t eaten anything since midnight the night before (it was about 3P now) and all I had post surgery was water. Ok, puking was not fun, but I did feel a little better afterwards. Cut to 10 minutes later…the headache was back and now it had been upgraded to full migraine status. The next few hours were torture. I just wanted to crawl into a cave. The migraine escalated to the worst migraine I ever had. For those of you that have never experienced a migraine, hope that you won’t ever experience one. This was like the worst hangover…times 10!!! The slightest sound, the dimmest light…it all was too much. I would just try and fall asleep, but even that was difficult. So for the next few hours I was just in and out. At around 6ish, I puked, again. After this 2nd puke, the nurse alerted the plastic surgery team that was on call. When the 2 docs came to see me, they asked me a few questions and told me that nausea and vomiting were normal reactions from anesthesia, but not the way I was experiencing it. “Normally,” people are nauseous for a little while and then puke. I would get nauseous right before I puked. They asked me if I normally have migraines. I don’t have them on a “regular” basis, but I do get them. So, it was decided that I wasn’t having a reaction from the anesthesia, but more likely that I just happened to get the worst migraine ever, at the worse possible time. They injected another dose of anti-nausea medicine into my IV, along with some Pepcid to coat my stomach. I dozed off for about an hour after that and when I woke up I finally started to feel a little bit of relief. By the time I felt good enough to leave and was cleared to go, it was about 10P. By the time we got into the car it was a little after 11P and by the time we arrived at home, it was midnight. I was so exhausted. I was finally able to eat something when we got home. It had been over 24 hours since the last time I had eaten anything. I was fasting for Yom Kippur a week early. Hah! I was starving and barely had enough energy to eat, but forced myself to get some toast down…then off to bed.
Cut to Saturday…I had just taken my shower and was redressing my wounds. It was the first day I was allowed to take a full shower. I had to wait at least 48 hours before I could changes the dressings or take a full shower. As I was changing my dressings, I get a call from the doc’s PA. She tells me that when they took a culture from one of my “pockets’ during surgery and took it to the lab, it tested gram positive for a staphaureas infection. Of course. She says that it’s ok since I wasn’t showing any symptoms, which I wasn’t and hadn’t. She then proceeds to tell me that that’s probably why my wounds weren’t fully closing and had been oozing all this time. No shit, Sherlock, you think? She tells me they’re going to call in a prescription for antibiotics at the local pharmacy and tell me to take all the pills. Easy enough. Luckily, these antibiotics didn’t give me a horrible rash, like the last time.
I haven’t been able to put my prosthetics on since the surgery, so I’ve been wheelchair bound for the last 10 days. Not fun. But I wasn’t really doing anything the first week, anyway. The first couple of days I just stayed home. The day I showered, we went out for a drive so I could get out of the house and get some fresh air. Although I was seated in the wheelchair, having the drain attached to me made it very inconvenient to move around. I had to constantly check that the tube wasn’t getting caught on anything or that the bulb wouldn’t fall out of my pants. Good times. I’m still wheelchair bound, but I was able to get the drain taken out this past Thursday! And stitches come out next week. It will probably be at least another week after the stitches come out until I can put the prosthetics back on. My back has been killing me from all the sitting. I can’t win. I have severe back pain All. The. Time. My back hurts from using the prosthetics and it hurts when I’m stuck in the wheelchair. Sigh…
Til next time. Thanks for reading!
I read about you in the new a few years ago and saw this site. Your optimism and lack of self-pity is so inspiring. Love reading your journal, you have a way of organizing complex information in a readable way. This post about your trip to Rye is so funny and poignant. I hope all of your loss and suffering will be made up in other ways down the line, and no more pain comes your way. Hugs!
Wowww!! You are a warrior and admire every bit of it. You may not remember me at all Teena but my name is Daphne and we met one time at the bar i use to bartend in (ALEO’S) by EMI. I still have a napkin and card that you and your colleagues had written down some positive little things for me to try and go about my singing. I will never forget that day because it was so beautiful and inspiring to see that 4 strangers who didn’t even know me personally could still manage to see potential in me when i couldn’t. Anywayssss i found the card and the napkin a few days ago in my old wallet and instantly remembered that night 🙂 and decided to do some googling until i came across your blog. Needless to say i loved reading about your story and i love how positive and inspiring you are through everything. God bless you always and keep it up!