Busy Day

Well today has been one of the most exciting days in a while.

This morning my mom and I went for a walk (well a wheel for me) around the neighborhood. It was perfect weather. We got to stop and talk to my old babysitter, down the street from us, which was nice.

By the time we got home I was having more pain so I took some medicine and laid down in my bed for a little nap. When I woke up we went to the lovely little farmers market in town, got some fresh local produce and some other tasty things.

That alone was a pretty big day for me, with my first outing and all. But, there’s more. My sister is coming home from Bolivia tonight. She’s been there the past month, so I’ve very excited to see her and it will make things more interesting around here.

So far today I’ve only taken one dose of pain medicine and I don’t think I’ll take anymore until I go to bed for the night. I plan on skipping the middle of the night doses as well, and then I’ll see how I feel in the morning. I’m hoping that I can drop it all by tomorrow; maybe just take one does before bed.

Incision and Such

Yesterday I took off my dressing and what did I find?... another reaction of some sort.

I started taking Benadryl a few days ago because I was really itchy so I’m going to keep that going until it starts to clear up. The rash is all around the steri strips that are over my stitches. My incision is on the side of my leg from my underwear line to about the middle of my quad. I’m supposed to leave it open (with the steri strips on) until I go to clinic to have the stitches taken out, July 9th. I’ve been keeping a chuck pad under my leg just so it’s clean and so I don’t get any drainage on my bedding. Now, I just have to avoid itching my leg.

I forgot to mention my scope incision. My surgeon took my scope stitches out when I was at the hospital for surgery #2. Since I have EDS a big concern is with stitches because my skin doesn’t properly heal together and a big risk is having stitches pop open after they’re taken out. To avoid this he put cement over my scope incision after he took out my stitches to double secure it. It looks like someone put clear nail polish over my incision. He said in a few days the excess cement would roll up and fall off. I thought it was kind of interesting, and my guess is that he’ll use it again when he takes my other stitches out.

I’m going to try cutting down on my pain medicine today. I’m going to start taking one pill during the day, then go back up to two tonight and see how it goes. Hopefully I’ll still be able to get pain relief and be a little livelier, since as of right now all I do is sleep. Also, I’m hoping that it makes me feel a little better because I’m still just eating sick food. I’m keeping my fingers crossed.

We scheduled days for my other hip this morning. As of right now the plan is to have the scope the day before Thanksgiving, then have break to heal and go back to school so that I only miss one day (surgery day). Then in December, have the second surgery the Wednesday before break so that by the time school starts I’ll be feeling good enough to go back. I’ll probably have to go back to school in a wheelchair because it won’t be 4 weeks post-op yet, but I think that will be easy enough.

Soar Throat, No More

I’m happy to say that after a few frosty treatments my soar throat is much, much better.

My hip is still pretty soar, I’m still taking all my pain medicine. Going to the bathroom seems like it’s gotten a little easier, it might just be that we have a routine down now. I pretty much stay in my bed all day. Sitting in my wheelchair is too uncomfortable because it puts pressure on my hip and makes me bend right where my incision is. I sleep most of the day away, and the night for that matter, but that’s ok because I don’t have much that I could be doing.

My incision has started getting itchy again, so I started Benadryl just to be safe. I’m supposed to take my dressing off today or tomorrow. I haven’t seen my incision yet so I’m kind of interested to see how it looks. I have to keep my stitches in until the first week in July, so I’m not too sure if I’m supposed to keep my incision open for that long, the discharge instructions weren’t very clear. I think my mom is going to call my surgeon’s office tomorrow and see what they say.

Overall, I’m feeling pretty good.

Home!

I came home from the hospital late yesterday afternoon. My surgery went really well. He ended up doing a lot less than planned, which means that my recovery should be more pleasant than expected.

I have to be non-weight bearing for 4 weeks, and I'm not allowed to do any abductions (pulling my leg outwards). Other than that I don’t really have any restrictions.

I’m defiantly ready for my pain medicine when the time rolls around. Getting up to go to the bathroom is a struggle, but I think we have a system down which works pretty well.

Ever since post-op I’ve had a pretty soar throat. It’s from the tube they put down your throat in surgery for anesthesia. Whenever you have surgery you get one of these, but I’ve never had such a soar throat. It makes eating a little tricky, so I think its frosty time.

Tomorrow's The Day

Well, I go in for surgery bright and early tomorrow at 6 AM.

I'll defiantly be in the hospital until Friday, but weather I go home Friday or not depends on how much my surgeon does. The blood that I previously donated will be at the hospital tomorrow just in case I need it. If I need blood during surgery they'll start a transfusion in the operating room, but usually a transfusion happens post-op (it could be the same day or even a couple days after). Transfusions are determined by amount of blood loss from surgery and hemoglobin level, so I'm sure I'll be having my hemoglobin checked often while I'm in the hospital.

I'm very excited to see how this surgery goes, as well as what my surgeon finds and what he thinks about my other (left) hip. We're going to see how this surgery goes, recovery and all and then probably schedule surgery for my left hip. The sooner we schedule the better because my surgeon has a very full schedule. I think with school and all, the smartest things seems to do my scope around Thanksgiving break and then do the next surgery around Christmas break, that way I won't have to miss school. Thanksgiving break gives my plenty of time to recover from the scope, then Christmas break gives me a little longer to recovery from the next surgery since that will be more invasive.

I'll keep you guys posted. I'm going to take my computer to the hospital so I'll try to write at least a short something about how things go, but I'm not making any promises.

Adiòs for now.

Whoops.

I guess I’ve gotten caught up in things, and have been bad about writing lately.

I’m doing really well! Walking fairly normally. I can’t walk around the mall or anything, but I can walk short distances and I’m supposed to take frequent breaks. I’ve been working on my PT exercises. I’m sleeping upstairs; I’ve even felt good enough to sleep on my stomach and non-operative side recently. It seems like my rash around my stitches is clearing up, we’ve discovered it’s probably from the beta-dine that we used at home to change the dressing. I’m not wearing a dressing over my stitches anymore, just the steri strips that they put on post-op in the hospital. Eventually the steri strips will fall off and my stitches will just be bear, one already has. Because I’m having surgery again instead of making me come into clinic they’re just going to take the stitches out when I go in on Thursday, convent. I’ve gotten the showering down. I wrap my leg in saran wrap so that my stitches don’t get wet, and then I’m good to go. It works very well.

Getting ready for surgery number 2.

There isn’t a whole lot I have to do since my last surgery was so recent. Just get together lost of loose clothes, and dresses as that seems like the easy way to go. I’ll probably shoot for more dresses because this surgery will have a larger incision and pants will just be too uncomfortable. I think I’m going to pack a hospital bag for this one since it’s likely I might have to stay.

Physical Therapy

I went and saw my physical therapist today. I've been working with him for years, I feel like he's family. He's been with me since my very first knee, so he knows how I work. When you're a tough case it's good to have someone who has been there from the beginning. He's good with thinking about new ways to approach exercises to adapt them for me, which let me tell you is how we make all of my exercises.

Anyways, I'm going to start on some exercises to work on my lower abdominals. This is something I've been working on for a while. The idea is that because I have this hip issue, I compensate by rotating my pelvis forward and then trying to lock everything out because that's where I'm more stable. I unconsciously do this to protect myself because my joints aren't strong enough to support themselves alone, hence EDS.

So what I have to do now is retrain my body how to work. Since I’ve been locking out for so long it’s what’s most comfortable for me and I have to undo all of that, easier said then done.

The way you do that is to strengthen all of the muscles that I’ve avoided using the past years, so off to my exercises I go.

Super Fine

We'll I'm happy to say I slept upstairs last night. I scooted up the steps because I'm too afraid to let my hip pop out, I'm sure that wouldn't be too pleasant. I slept in Alex's room because my bed is still downstairs and it made more sense to just leave it down here for my next surgery then to carry it up and down, well for my dad to carry it up and down. I started the night out with the CPM machine on, but it was bugging me and it keept slipping off the bed, I don't know how tall men use it because the bed is even too short for me. So anyways, I took it off and sleept on my side, that was lovely.

This morning I hopped down the stairs, that scooting business is just too slow.

My pain is not bad at all; it's better than what my hip pain was pre-op, so that's good.

I ate real food last night, and pretty much all of yesterday.

Walking

Today I decided I didn't want to use my wheelchair, or my walker. I simply walked all by myself to the bathroom, then outside. Now I'm going to go upstairs and take a shower, like a real person does.

Oh did I mention the walking and the going upstairs part!

Allergic Reaction?

So we tried to do everything possible to prevent me from getting a reaction to adhesive and everything else they used on my skin during surgery. You might remember the terrible reaction I had to the tape that was used for my epidural with my last surgery. It was a mess, to say the least. After experiencing that disaster, we though that I had an adhesive allergy, specifically to Medipore (a specific type of tape, which is commonly used for surgical dressings). So for this surgery, we told the hospital that we thought I was allergic to Medipore tape, so they used a different kind of tape, which I’ve used before and hadn’t had any trouble with. Thinking that would be the end of that, we didn’t pay too much attention to my dressing. When I went home we changed the dressing daily, like they told us to. The stitches looked really good, I didn’t even have bruising.

By about day 3 or 4 my stitches started to turn red and they were super itchy. Knowing my history, we started on Benadryl pronto. Today, the redness is a little worse, and there are several little bumps that have formed around my stitches. It doesn’t make much sense because I never had any adhesive right around my stitches; the tape that was on my hip was much farther away, not close to my stitches. So it seems like I might be allergic to the beta dine that we used to clean my dressing.

We’re going to make a call to my surgeon’s office to see what they think, and to see if we can narrow down what I’m having a reaction to so that I can avoid this for the next surgery.

Ramps

My ramps came today so I can freely go outside. It makes things so much easier. Right now I have one 2 foot and one 4 foot ramp. The 2 foot one is nice because it's shorter and doesn't take up as much room, but it makes the angle of elevation a lot steeper, so someone else has to ease me down the ramp. The 4 foot one is really just too long, but I like it because I can do it by myself. I think we're going to get the 4 foot one exchanged tomorrow for another 2 foot one. It makes it more manageable, and this way we can take them to the cottage when we go for vacation.

After the ramps came my mom and I went to Kohl's. It was really nice to get out of the house finally. I got dressed in clothes, as opposed to just nightgowns. Let me tell you, getting dressed makes you feel so much better.

Another big accomplishment, I skipped one of my pills. I'm hoping to be completely off my pain medicine by the end of this week. I think I'm going to try skipping the 2:30 AM pill too and see how that goes, maybe even the 6:30 AM. Then just take the 10:30 AM one and see how I do for the day. It would be nice if I could just do two tomorrow, morning and right before bed. We'll see how it goes.

Headaches

On Saturday I started having a really terrible headache. It made me nauseous and everything, just about the worst headache I've ever had. We called my surgeon's office to see if it was some sort of reaction from my medicine, or from the anesthetic during surgery. It turns out that I was getting too much medicine and that was causing the migraine. I decreased my medicine down from three pills to one and eventually started feeling better. By Sunday my headache was completely gone, and thank goodness for that!

As long as I don't have another headache like that I'm doing really well. My pain is manageable and I'm using the CPM machine as much as I can. I'm finding that the more I use it the better I feel. I use it almost every time I'm laying down because I find it more comfortable, and I always use it at night. I've even started to increase the amount it bends my hip, I'm up to 52 degrees now.

Somehow last night when I was sleeping I pulled my leg out of my CPM machine. I have no idea how I did this because my leg gets strapped into the machine when it's on. When I woke up my leg was out of the machine, but the straps were still buckled and everything which means I pulled my leg out with out undoing the straps... interesting.

CPM Machine

This is the CPM machine I had in the hospital, I have one at home with me now. It bends my leg at my knee to prevent scar tissue from forming around my hip. I really like it, it makes my hip feel better. I even sleep better with it on becasue I can't move my hip around so much when it's on.

Home Sweet Home

My surgery went really well, like I said and my surgeon thinks that my next one is going to go better than expected.

I had a spinal tap put in in pre-op, which I don't remember at all. They put medicine in through my IV which I remember, but after that I was out.

I woke up fairly comfortable in PACU (post-op). After I was more awake, my mom and dad came in. I don't remember a whole lot from PACU because I was still pretty out of it. When I was ready to go up to my room they called the transport people. The guy came and got me, but when we got to the elevator my bed wouldn't fit in. I had bars all over my hospital bed, kind of like a canopy, so that I could lift myself up, but they stuck out too long so the elevator wouldn't close. As you could imagine, coming right out of surgery it wasn't very plesant to move let alone have someone push and pull on my bed to try to make it fit. So he took me to another elevator which was bigger, the only trouble was that this elevator was on the other side of the hospital. When I finally got to my room, about 20 minutes later, I was in more pain, but they got it calmed down and then I just sleep for a while.

It seemed like everytime I woke up someone was bringing me another plate of food. I hadn't eatten anything since before surgery and the first thing they tried to give me was spaghetti. Does that sound like a good idea to you? Well I didn't think so. Needless to say I skipped out on the spaghetti.

I had a pretty good night in the hospital last night. The morning didn't go so well though. Physical therapy came in the morning to get me up and walking. I thought I was ready so they got me up and I went to the bathroom (they took out my catheter). By the time I got to the bathroom I was really nausous and dizzy. Needless to say it was time to go back to bed. Once I got back to bed I feelt a lot better and took a nice long nap.

When I woke up I felt a ton better and I was ready to go home. PT came in again and I successfully went to the bathroom and practiced walking. The nurse changed my dressing, which looked pretty good. My hip isn't bruised or anything. Then I was ready to go home.

The car ride home was a little stressful because every turn and little bump made my hip hurt more. Once I got home and got into my bed I was much more comfortable.

I'm defiantly glad to be home and I'm having pretty good pain mangement.

Scope

Scope went really well today, better than expected. My surgeon think my next surgery will be better than expexted as well.

I'm staying in the hospital untill tomorrow (Friday) late mornig, at least thats the plan so far. I have a catheter in, so I'm pretty much bedridden, which I'm fine with and it makes things easier and less painful. I've been pretty nauseous, so I haven't eatten much today.

I'll give everyone a more detailed report later when I'm more with it.

Ready To Go!

I'm all done with school, so now I'm full force ready for surgery.

Insurance issues are all resolved, thank goodness.

I've got almost everything moved downstairs, for the scope. I'm planning on being about to go upstairs by about day 3 after my scope. The scope isn't going to be a big deal whatsoever, so I'm not worried about stairs with that. However, for the osteotomy /z-plastia I'm planning on not being able to go upstairs for 6 weeks or so. Being 100% non-weight bearing and plus having an already unstable "good" hip, I just feel like is setting myself up for disaster to try to tackle stairs. I'm trying to avoid making this harder, and I can't even begin to imagine if I dislocated my left hip while having the right recover, so I’m just going to stay away from the stairs.

My aunt is coming to stay with me after my scope because my brother is graduating in Cinci. I’m sad I can’t see him graduate, but I'm looking forward to seeing my aunt and it will add some fun to recovering.

I’m getting things set up to be able to have a hospital bed at home. I’m not going to have it here for the scope, but defiantly for the osteotomy/ z-plastia. After the second surgery I won’t be able to sit down anywhere low, the couch is even going to be too low, so the hospital bed will pretty much be my only option. There are some hospital recliners that I could get, but I haven’t decided weather or not I’m going to get that. I’ll get ramps installed so that I can go inside and outside by myself. For my last surgery when I was in a wheel chair my dad would pick the wheelchair up over the step, in and out of the house. Let me tell you that was nerve racking! I’m also getting a tray for my wheelchair and hopefully a bed try because I won’t want to or be able to put anything on my lap.

I have a few extra things to do around the house, but for the most part everything is set to go. I’m going to enjoy my next two days of summer while I can still move around freely.

:)

One Week!

I can't believe my scope is only in a week. I feel like time has flown by.

I know most people would be nervous at this point, but I know I'm ready and I know this is the right thing for me. It's exiciting to think that my hip issues (the right hip at least) are soon going to be no more. I'm not expecting to be able to run a marathon, or play soccer, but I'm ready to be able to run around with my friends and not have to constantly be thinking about how something is going to effect my hips. I'm ready to not have to worry about going up and down steps, and most of all I'm ready to live painfree (or at least live with decreased pain) !

Blood...Check!

I donated my last unit of blood last night. (I did two all together) My hemoglobin droped about 1.5 which isn't terriable, but I have to make sure I load up on iron. I have to keep it above 12 (it was 13.3 before I gave blood this last time) inorder to be able to have surgery.

Cream of Wheat here I come!

P.S. Thank you for all the good wishes, it really means a lot to me.