Tidbits

Hello all!

It’s been a while so I thought I’d check in and give you some updates and lay down some thoughts I’ve had lately.

What’s the latest and greatest in the life of hip-y Danielle? Well, for the past three and a half months, we’ve been building a house! It has been so much fun, and extremely exciting! We finally just moved in the first week of January, hence my hiatus from blogging. It’s been a crazy couple months with packing up the old apartment, and moving into our dream home.

So, for anyone who hasn’t been through the process, building a house is a LOT of work. We loved it, and it was an amazing opportunity, but it is hard work! We spent many, many, many hours looking at siding choices, and paint colors, and light fixtures, and cabinets, and sinks, and carpet, and everything else under the sun. Even ceiling fans and grout colors. 

My main point here is, if we had tried to go through this process two years ago? Well, I would have been absolutely miserable. We had days where we visited FOUR different Home Depots and several Lowe’s in the very same day. We spent entire days, from 7 o’clock in the morning until 7-8 o’clock at night, doing millions and millions of things for the house (Dramatic? Yes. Appropriate for my feelings? Absolutely. I never want to go to those places again ever). I know for a fact that I wouldn’t have been able to enjoy this process at all if it weren’t for PAO. And what’s worse is my husband would have had an extreme burden of doing most of the work. I am sure I would have missed out on a lot. It seems like every day I have another reason on why I’m so glad not only that I had PAO, but also that I timed it out for when I did.

 

Besides all of the house building activities (which seem to never end, even after we’ve moved in), I’ve been keeping up to speed on my hip-y’s and trying to keep tabs on what’s what. I’ve been chatting with some ladies about their dysplasia experiences, and have been keeping up with message boards and Facebook groups.

Lately, it seems like a common theme for these media outlets are these two things: the hospital stay for PAO, and the surgical screws.

The questions and comments on the hospital stay range from “What should I bring?” to “How long were you there?” to “What are some tips for when you’re in?” The best I can do is to touch on my experience and hopefully I can be of help in some way.

I was in the hospital for 5 days. My surgery was on Friday, October 26^th, and I went home on Tuesday, October 30^th. From what I’ve read, 3-5 days is average, so I’d expect at least three days. The packing questions makes me chuckle. This is because I packed a bag with all sorts of things. I packed like I was going on vacation, except I packed sweats and t-shirts exclusively…like I was going to a perpetual sleepover. I packed books and magazines and my iPad. I packed my toothbrush and toothpaste and facewash and dry shampoo. Do you know how much of it I used? Zip. Nilch. Nada. I stayed in a hospital gown the entire stay because I had so many people coming in to check the drain and the bandage. They checked my feet and range of motion. Putting sweatpants on would have been an annoying hindrance, not to mention how hard it would have been to take them on and off.  All of the cleaning and hygiene things I did either from my hospital bed, or in my physical therapy recliner. It was all done with what they gave me in the hospital, because it was too much effort to get anything from my bag. The last thing I will say is for the ladies (sorry guys, this may make you squirm): I packed feminine hygiene products just in case and I’m glad I did. I got Aunt Flow 5 days early because of the shock my body was in. Supposedly that’s pretty common. If you want to have your own particular type, I would pack some.

In terms of keeping busy, I was too tired and out of it to read magazines or play on my iPad. I actually felt too tired to even listen to music. I mostly just slept and watched mindless TV.

My tips for your hospital stay? Well, I’m not sure how each hospital works, what the protocol is, etc. But for me, I was tagged as a fall risk (I even got the fancy bracelet). This meant that any time I had to go to the bathroom, I had to call the nurse to come help me out of bed and follow me to the bathroom. So, my advice is to push the call button the very second you feel any kind of anything in your bladder. Nurses are BUSY. Busier than I can even begin to explain. It’s crazy. And while I am completely sympathetic and have complete and utter respect for their position and their hard work, it took an average of 12-15 minutes for them to come help me to the bathroom. (Yes, I timed it and took an average…I’m a scientist, what do you want?) That may not seem like a long time, but post-PAO my muscles were a disaster…holding my bladder was really not my best talent. If you even think you maybe might have to pee, push the button!

The only other thing I would say is that you should sleep every second you can. When you’re in the hospital, you’re on the GOOD drugs, you’re mostly alone (mostly), and you’re in a bed that you can adjust based on comfort. When you go home, it’s going to feel like you’ll never sleep again. It took me MONTHS to be comfortable in my bed post-PAO. Additionally, when you’re in the hospital, the nurses are going to come (what seems like) every five seconds to check on you. They will wake you up if you’re sleeping…they have no mercy. If you don’t sleep whenever and however, you will never sleep ever again. It’s AWFUL. Take advantage of sleep every opportunity you get.

The other thing I’ve been reading a lot about is the surgical screws. It seems like a 50-50 shot on whether someone has kept their PAO screws, or had them removed. I still have mine. They do bother me, from time to time. I can’t wear tight-waist jeans, and a lot of times a belt is painful. I can’t say it’s so bad I want to have them removed. I will say though, that the bone around the bone-cuts and the screws seems to be growing exponentially. Every few weeks, I feel like there is more growth sticking out of the front of my ilium. It’s seems like excess bone growth surrounding my screws. I’m not sure if anyone else has experienced this? It is definitely painful sometimes. Especially because I feel like it’s contributing to my psoas issues. Hoping to hear if anyone has had this and how it was addressed (if at all).

Well, what I thought was going to be a short post about not too much has turned into a novel! I am sorry to overwhelm you. Hope it’s been helpful for anyone who’s been having these thoughts. As always, if you have any questions or comments please feel free to leave it in the comments box. I’d love to hear from you!

Thanks all,

We’ll chat soon!,

D

Surgery Day and Hospital Stay

So, I was going to break this into several entries...but the experience really melded into what felt like one long day...so I decided to keep it as one long entry. So, here you have my surgery day, and the 4 day hospital stay that went with it.

Surgery day, YIKES.

We woke up around 4:30 so that each of us could shower and be ready for the 6:00 departure.
My mom met us at our house around 5:45, and Dad-in-law met us at the hospital for 6:20.

When I first went in, I had to go to two different places to check-in and fill out lots of paper work. It moved relatively quickly, which was great for me because I hate lingering. I went into the surgery prep area around 7:30 where I had to get into my surgical outfit, a johnny and a new blue shower cap looking hat, woohoo. Once I was all suited up, a couple doctors/nurses came in to speak with and introduce themselves. They were my surgical nurses and some of my aneasthesiologists, very nice and caring. Almost right away, Dr. S came in to see me and had a nice long, calm conversation about the plan, and how he's hoping the day would go. The plan was as follows: Go in and get to the hip first. Then to assess the actual structure of the hip and begin cutting and placing bones as needed. Once they made one of the final cuts, he was going to decide if he wanted to look into the joint and see if he could tidy up the labrum a bit. If the labrum was accessible, an easy fix, and the rest of the surgery was going smoothly, then he would address the labrum while he's in there.

With all that being said, the aneasthesiologists started me on a IV of some wonderful things to "take the edge off." And it really did. Phew. We waited for just a few more minutes, and then I was off to the races. I said my goodbyes to my mom and my hubby (who were in surgical prep with me), and they wheeled me away.

Right before we left the surgical prep area, they gave me another hit of something else to help me relax while waiting for anesthesia. Don't know what it was, they didn't tell me...but boy oh boy, I had not a care in the world! I was thinking: "Allllllrrriiiigggghhhhtttt, surgery!"

I don't remember too, too much after that...but I do remember a couple glimpses of the operating room. Believe you me, they look NOTHING like they look on Grey's Anatomy. They are somewhat small, cramped with TONS of high storage systems with drawers, everything's covered in plastic and all you can see really are small passage ways to different machines/equipment. It was nuts. The last thing I remember is seeing Dr. Schiller in his surgical gear standing at the x-ray machine showing a group of Residents (I assume), the game plan for cutting the bone. Then in about a milli-second, the anesthesiologist put the mask on my face and I was O-U-T.

About five seconds later (real time approximately 6 hours), I woke up in recovery feeling VILE. Oh my gosh I can't even begin to explain the feelings. Easiest way to describe it is the world's WORST, most TERRIBLE hangover. It was like I had been trampled by elephants. I couldn't wake up for life of me, I lost so much blood in surgery my skin tone was a lovely mint color, and I was dry heaving every 2-3 seconds. It took me almost 2 hours and a blood transfusion in recovery to start feeling a bit more human. I honestly can't remember much hip pain, probably because I was so anxious about everything else. My recovery nurse, Sarah, was AMAZING. She helped me through the whole thing and stayed by my side the whole time.

Here's a glimpse into the surgery: It took longer than Dr. S had hoped (for whatever reason...not totally sure), and I bled more/faster than they were expecting. The combination of the two led to me losing about 1,600 cc's of blood. That's almost 2 LITERS. Now, mind you, they had the cell saver on, so they tried to recover as much as they could...but by the end of the surgery I really had lost a lot. More than anyone was really expecting. But, that's the thing, you can run every test in the world...but every person is different and bleeds differently. I don't blame anyone for that. You can't plan it, no matter how hard you try.

So...after that kind of blood-loss, your blood pressure PLUMMETS. I could see the read-out screen in recovery...and maybe I'm too smart for my own good, but I knew the heart rate and blood pressure numbers it was reading were really low. I was really tachycardic during and after surgery (had a very fast heart rate, almost 140 beats per minute, normal is around 90), and my blood pressure was so low it was shocking to me. It was in the 60/30's early on when I was so "drunk" I could barely move. It's generally supposed to be around 110/70. It came up very slowly, but still stayed low until a couple days later.
However, besides all of that crap, I was honestly so unbelievably thirsty! My throat hurt a little from the breathing tube, and I couldn't wait to have a sip of ginger ale (drink of choice in hospitals, apparently). I drank almost 2 cups of ginger ale in recovery while waiting for my room. That was such a bad idea...but it tasted so refreshing on my mouth and lips and throat, it was almost heavenly.

Now...I wasn't worried that it might be life-threatening or anything like that. The care around me, and just Sarah's presence alone, made me feel like I was perfectly fine. You know what I was ACTUALLY worried about? My HUSBAND and family waiting for me to come out of recovery! I know my husband is a worry-wart, and I knew he was ticking down the minutes. The Dr. told him I'd be out of recovery in about an hour, at that time we were working on almost 2 hours until I was good enough to see him. When he came in, I looked a lot better (color wise), and I had become a bit more understandable with my language. I felt a lot better, and like I could relax when I saw him and he knew I was okay.

He waited with me until they brought me to my room. And then the whole family came with me as I entered my new home for the next four days. Of course, once you get in your new room, you have to do the hospital bed transfer...or otherwise known as the most humiliating thing in the world. They turn you and tug you and undress you and your catheter is uncomfortable and you're not feeling well from anesthesia and your roommate's family walks by and you moon them with all of your most private parts. SIGH. That was awful. Seriously. It took a couple minutes to get it right because of my hip...I couldn't have been more thankful when that was over...let me tell you.

So...I get settled in my bed, my family comes in and we sit. Well...they sit...and I sleep....sleeep sleeeppp, sleep. They went to get dinner, because I was so out of it anyway...it didn't matter. By the time they came back about an hour and half later, I was finally awake enough to spend time with them. Dr. S. came by too, which really made my night. He was so excited about the success of the surgery, he gave me great coverage, enough he thinks, to probably last me until I'm close to 70. That was really great news. I had already heard that from hubby, but it was nice to hear from the Doc himself. The other thing Dr. S. did tell me was that because of how long it took him to give me that fantastic coverage, they didn't have time to look at or address the labrum. This means that about 8 weeks from now, I will need to have follow-up surgery. Not the best news...but I'm so unbelievable happy with the success of the PAO, that I'm really not worried about the hip scoping!

Dr. S left for the night, and at that point...I had been having some pain in my hip...probably about a 6 out of 10. The lovely nurse decided to give me some dilaudid. And by some, I mean 2 mg. May not seem like a lot, but I am a teeny, tiny person...and dilaudid is synthetic morphine. So...2 mg sent me FLYING HIGH. What a strange feeling when they administer it! It was like a wave of heavy heat floating across my chest...so strange and unnerving...I really didn't like it. What I also didn't like, wass that about a millisecond after I was given the 2 mg...I felt like a stoner who couldn't talk, or communicate...or do anything except sleep. My hubby was actually worried about it, because I fell asleep/half conscious almost immediately.

And then came the sickness. Oooohhh boy...the sickness. I booted (puked, lost my lunch, praised the porcelain god, upchucked...you get the idea). I booted what felt like 100 times for the next three hours. Every ounce of anything in my body came out...and I just laid there like a beaten woman. It was AWFUL.

Around 8 o'clock, they started with my second blood transfusion. My blood pressure was still pretty low (for me), and they wanted to get it back up to normal. The blood they gave me for both transfusions was O-. Which was surprising to me because they had all the necessary info to give me MY blood type (A-). Why use the O- when you can use the correct kind? These things baffled me...and it turned out my baffled nature was instinctively correct. By 1 am, mostly through the transfusion, my temperature had risen to 100.8. That's a bad sign during a blood transfusion, because it means that your natural blood is not playing nice with the transfused blood. At this point we had to do all sorts of blood and pee tests to make sure my body wasn't freaking out completely. Once my transfusion was over, all we could do was just wait and see what happened.

My fever from the transfusion kept up in the low 100's to as high as 101.4 until around 2-3 am on Sunday. It finally broke and I started to feel better.

Saturday was an okay day, besides the fever mishap. Physical Therapy (PT) came and got me out of bed using a walker and in a reclining chair. Such a seemingly small thing, but it was a huge effort for me! I was so happy when I sat in the chair. Felt so good, empowering even.

I mostly just rested and visited with my mom and hubby after that. Slept when I wanted, watched TV, drugged up to ease the pain, and just vegged out. I started on real food that day...I mean...if you call hospital food "real." This day they also stopped the IV Dilaudid and started me on pills: Oxycodone.

Sunday was a good day, except for the morning. I had a BUSY morning, and it led to me feeling really nauseas. I had the catheter removed, I was told to get up using the walker and get out of bed and in the chair for breakfast, the Fellow came and pulled my incision drain out and changed my dressing, then I had breakfast...all within an hour and a half time frame. It was just way too much, too fast. I got really dizzy and nauseas and had to have some zophran for the nausea.

After a couple hours though, I was feeling much better...had a really good Sunday. I had hardly any pain to speak of. My blood pressure had come up and my fever had broken. I also had some good PT with the nurses where I got up and used the walker to walk to the bathroom by myself and back to the bed. Things were looking up. Dr. S came in (on his off day...mind you), to check in with me and see how I'm doing. Answered all of our questions, while his adorable little daughter waited out in the hall way. Dr. S was so happy with all of my progress, that he was saying I could go home the next day, if I wanted to! There was light at the end of the tunnel. But unfortunately...going home on Monday was not a good idea. Hurricane Sandy was going to strike that day...and they didn't want me traveling/going home with such treacherous conditions.

So...Monday came and went. Was a great day, my best day yet. I felt awesome (in an obviously relative way), hardly any pain at all. I wasn't on the pain meds much at this point...only (as instructed) before PT. I slept well, I ate well, and I went through some really good PT where I  used the walker and walked all the way down the hallway and learned some exercises for my leg. It was nice to be doing so much!

Monday night I didn't sleep very well, I had a new roommate who was rude and inconsiderate of my needs. Won't go into details...but many times I fondly referred to her as "The Wench." I think I was also anxious because I knew I was getting out of that place. While the staff and everyone was SO great, I really wanted to get home and start the real road to recovery.

Tuesday came and went so fast. I had PT in the morning to see if I could pass my last tests before being discharged. The major test was stairs, to see if I could go up and down stairs with the crutches. I passed the test with flying colors.  I did have breakfast and lunch in the hospital, which was nothing write home about...but it kept me occupied while I waited for all the discharge papers to come through. It took until 3 for everything to be settled for me to leave the hospital...I can't understand that! But...that's okay. I keep telling myself...I know a lot of people have to sign off on it...and everyone is very busy.

Anyway, the couple main things I took away from this surgery and hospital stay were as follows:

- I think they serve better foods to inmates.

- Nurses/CNA's are BUSY. Unbelievably busy. And while I appreciate every single thing they did for me...the one piece of advice I would give someone going into and extended hospital stay is this: the very SECOND you feel like you have to pee (or whatever), push that call button like it's going out of style. On average, I had to wait almost 15 minutes for someone to come help me go to the bathroom. And after I had the catheter taken out, I needed to pee really often. I couldn't get out of bed on my own (for obvious reasons). That may not seem like a super ridiculous period of time...but when you've just gone through a traumatic surgery...where they cut a series of muscles in your thigh and pelvis...you better believe that holding it is not your strong suit. There were several instances where I really thought I wasn't going to be able to hold it.

Lastly, and most importantly:

- The nurses and CNA's and the staff at Rhode Island Hospital are top notch. Unbelievably nice, helpful, knowledgable and extremely selfless. I was amazed, time and time again, at how caring they were, even to the cruelest patients. It takes an exceptionally caring person to be a nurse. Makes me even more proud that my brother went into that field.

- I am so THANKFUL to blood donors. I always knew it was important...of course...but it puts into a whole new perspective when you're staring at a unit of someone else's blood dripping into your body for your health, that someone so graciously donated to a stranger. Seems like such a small thing...but it really was a touching moment for me. Not to mention, I had to have 2 transfusions, so that's 2 different people who gave me a piece of them...not even knowing me. Really amazing stuff...if you ask me.


So, that is that! Please, please, please feel free to ask me any any all questions you may have. I had a great experience, overall...and would love to help anyone else preparing for this to understand the in's and out's of my journey.

Thanks so much for reading!
D