Dear God,
Speak gently in my silence.
When the loud outer noises of my surroundings
and the loud inner noises of my fears
keep pulling me away from you,
help me to trust that you are still there
even when I am unable to hear you.
Give me ears to listen to your small, soft voice saying:
"Come to me, you who are overburdened,
and I will give you rest...
for I am gentle and humble of heart."
Let that loving voice be my guide.
Amen.
Henri Nouwen
This is a prayer posted by a friend on her blog. Thank you Megan Hershey for sharing this! It means more than you can understand. I was reading her blog for updates on recovery when I came across this and as I read it I began to cry. It was everything I have felt about my faith, my health, school, work, everything. It was a prayer that I had felt, but couldn't find the words to say, until I saw this.
The last couple years have been more then challenging for me with everything from an abusive relationship, surgeries, failed surgeries, school issues, work, finances, etc. It has felt like a constant beating with no relief in sight. Even my faith has been shattered with the stress of life's circumstances. For so long I have felt abandoned by the person I could always count on, God. I felt as if I was alone to deal with my struggles as if they were a form of punishment for not being good enough. I have always been a positive and hopeful person. I use to always wear a smile on my face and if I wasn't smiling I would be asked what is wrong? I use to always know that things would work out. But, in the last couple years in particular I have dealt with depression, sadness, loss and the stress of life began to wear on me and my faith. I stopped attending a church I use to call "home." I stopped praying or thinking about my faith and stopped looking for guidance beyond myself and Earthly family. I have felt abandoned.
I know what people say about staying positive or praying for answers, but for so long I felt as if my prayers went unanswered and even unheard. I know he is still there, waiting for me, but I have also been scared to return. To put my heart out there, instead of leaving the wall up, until I saw this prayer. This prayer explains everything I have felt, but could not explain, not even to myself. I saw this as a starting point. If I didn't know what to say or to pray about, I could say this. It explains how my heart has felt for so long. I don't believe that I am a negative person, but do believe that I have been overwhelmed for so long and it has greatly effected me. I know relief will come for me in many ways and that I will regain my strength and daily smile, but I also know that wounds take time to heal. But for now, it begins with this prayer...
Monday, July 11, 2011
Friday, July 8, 2011
Post-Op Update
I will be 3 weeks post-op this Monday and have had some rough and low moments these past few days. The pain has increased despite efforts for relief using pain meds, icing, rest, etc. It definitely is frustrating because I am following my post-op instructions, but the pain has been sharp and severe recently, especially in the groin. If I do anything in regards to PT or even a short outing you can definitely tell the increase in swelling in my hip/leg. I try to ice every night before bed. I have also had some side effects to the Lovenox shots with bloody noses. I am going to call my local OS, Dr. Maiers, and see if it can not be ended early. I feel like it's definitely done its job and if there is anyway to change to aspirin or end entirely. I also want to talk to Maiers about the severe groin pain and if it is normal post-op. I have been having popping since surgery, but it has been non-painful and more due to swelling and the IT band snapping over the blade-plate. Fortunately, the nausea has been improving with a change in meds to Zofran which has helped even just with being able to do more daily tasks without becoming overwhelmed with nausea. Now I am just ready to get the pain under control.
I met another fellow hippie, Megan Hershey, this past Wednesday. She is such a sweet and kind-hearted person. She brought me some flowers, soup and fruit. We got to visit for a bit and she looked amazing for her having her PAO in March with Dr. Clohisy out of St. Louis. She was using no walking aids whatsoever! We talked about each others stories, Dr. Scheid, etc. It was great seeing a friendly face, but definitely made me think about what has all happened, what I have lost and already dealt with, but also what is left to be done. It is hard to think that one person's mistake or negligence from lack of experience and ability to know when to say no has had such a profound effect on someone's life. I have been thinking what it would have been like had I never had surgery with Dr. Scheid and where would I be. I would have been on track to be an Army officer, still distance running and maybe having a life that wasn't in constant pain and full of appointments. I also think will I ever be able to get past this stage of constant surgeries and have a sense of normalcy in my life? I also think of how it has effected my family and the burden I have put on them financially, mentally, emotionally, etc. Especially lately, I have felt like such a burden and whether this is all worth it? Will this get better? It has definitely brought me to some low moments. I am trying to find strength through others love, support and encouragement. I hope these feelings will pass with time as I heal mentally and physically. This has not been a short, nor easy journey. I am more than ready for these surgeries to be over with and to get a significant break from them.
I will post some pics of my X-Rays when I see Dr. Maiers in another 2 weeks or so. I am hoping to see some progress with the bone healing and to begin PT and increase weight-bearing!
I met another fellow hippie, Megan Hershey, this past Wednesday. She is such a sweet and kind-hearted person. She brought me some flowers, soup and fruit. We got to visit for a bit and she looked amazing for her having her PAO in March with Dr. Clohisy out of St. Louis. She was using no walking aids whatsoever! We talked about each others stories, Dr. Scheid, etc. It was great seeing a friendly face, but definitely made me think about what has all happened, what I have lost and already dealt with, but also what is left to be done. It is hard to think that one person's mistake or negligence from lack of experience and ability to know when to say no has had such a profound effect on someone's life. I have been thinking what it would have been like had I never had surgery with Dr. Scheid and where would I be. I would have been on track to be an Army officer, still distance running and maybe having a life that wasn't in constant pain and full of appointments. I also think will I ever be able to get past this stage of constant surgeries and have a sense of normalcy in my life? I also think of how it has effected my family and the burden I have put on them financially, mentally, emotionally, etc. Especially lately, I have felt like such a burden and whether this is all worth it? Will this get better? It has definitely brought me to some low moments. I am trying to find strength through others love, support and encouragement. I hope these feelings will pass with time as I heal mentally and physically. This has not been a short, nor easy journey. I am more than ready for these surgeries to be over with and to get a significant break from them.
I will post some pics of my X-Rays when I see Dr. Maiers in another 2 weeks or so. I am hoping to see some progress with the bone healing and to begin PT and increase weight-bearing!
Wednesday, July 6, 2011
Post-Op Week 2 & 3
Post-Op week 1 was spent in the hospital recovering from surgery which I discussed in the previous post, so I won't repeat. Post-op week 2 and going into week 3 has been spent very low-key, resting at home. I have had some decent mobility getting around the apartment, but still need a lot of help getting things done since I am non weight-bearing and don't have any free hands. I have had good pain management with good and bad days, but getting around really well, especially compared to my RPAO. The nausea has been terrible recently, but got a new script for Zofran from Dr. Maiers which has made a world of difference. I have made it out of the apartment a few times even for a little bit around Target. I was able to spend a couple hours out with my friend, J.R., and went to a couple stores and grab a bite to eat. It was nice getting a break and getting out for a bit. My endurance is very low and usually excursions like that result in me napping for awhile afterwards. I have definitely been sleeping a lot, which my body needs to recover.
It is frustrating not being able to do what you want. I have felt bad not being able to do much with my dog, Chloe. I do try and play fetch with her from the couch though. She has not really left my side since I have been home, more so than usual. I think she knows that I am recovering and wants to help :) She definitely makes me feel better and keeps me company and somehow finds a way to make me laugh! She is my baby :)
I have appreciated all the love and support from family and friends, as well as the help my Mom and Dad have given me doing day-to-day tasks. It is a blessing to have so much encouragement and I look forward to meeting another hippie today, Megan Hershey. I also hope that everyone had a safe and wonderful holiday weekend with friends and family celebrating our freedom and nation's founding!
It is frustrating not being able to do what you want. I have felt bad not being able to do much with my dog, Chloe. I do try and play fetch with her from the couch though. She has not really left my side since I have been home, more so than usual. I think she knows that I am recovering and wants to help :) She definitely makes me feel better and keeps me company and somehow finds a way to make me laugh! She is my baby :)
I have appreciated all the love and support from family and friends, as well as the help my Mom and Dad have given me doing day-to-day tasks. It is a blessing to have so much encouragement and I look forward to meeting another hippie today, Megan Hershey. I also hope that everyone had a safe and wonderful holiday weekend with friends and family celebrating our freedom and nation's founding!
Surgery, Post-Op & the Beginning Of My Recovery
It will be 3 weeks on Monday since my FO, but I would like to re-cap my surgery and hospital experience. So here goes...
Surgery Day:
My Surgery was Monday, 20 June 2011, at Children's Hospital of Boston in Boston, MA. I discussed my Pre-Op and testing in my prior post, so won't really go into detail about that. The couple days prior to surgery was not really as fun as I anticipated because I was very nauseous due to a UTI and more so, my nerves. I had to arrive at Children's at around 10:30am for surgery to hopefully start at noon. I was still nauseous, but a bit better, but still nervous for surgery. We arrived and signed-in at admitting. I watched Madagascar and waited to be seen by one of the nurses for some quick vitals and lab repeat. I was cleared and they were ready for my just prior to noon. Wow, I thought that was quick. My mom and I were taken up so that I could change and get prepped. It was so cold, so I quickly changed and got warmed up with some blankets. It took a bit longer than I expected, but soon the nurses, Millis and my anesthesiologist were swarming and ready to go. I met Dr. Millis's fellow, Dr. Hayworth, who came in to discuss the procedure, last minute questions, etc. He was very good to look at as well ;) He signed my leg and then it was the Anesthesiologist's turn. My anesthesiologist was Dr. Shoiab Mohammad and was AMAZING! Millis typically hand-picks his teams depending on the case and Dr. Mohammad was very experienced with complicated pain cases, such as mine. In particular, my nerve issues and pain from previous procedures. He explained everything and told me what he was doing every step of the way. He had a bit of a hard time finding a vein. I am not an easy stick and was dehydrated, which did not help the matter. Once the IV was in, I got some meds to relax and we were off to the OR.
Once in the OR, I was transferred to the OR table to be prepped, have my epidural put in, and then off to sleep. The epidural was a new experience for me. I was awake, with some mild meds for relaxation. It was very cold, but the nurses did there best to warm me up and keep me calm. I had to sit-up and make a "C" with my back. I hugged some pillows and a nurse hugged me to keep me still so the best placement of the catheter could happen. My back was scrubbed and prepped and the epidural placed. I finally got to lay down and was covered with warm blankets. We waited a few minutes so that we could test the epidural. After about 10 minutes, both legs were numb and we were good to go! Off to sleep.
The surgery was expected to last about 3 hours, but ended up a little over 4 hours because Millis is very particular in what he likes, which is always good when you are the patient. My right femur was rotated almost 25 degrees internally. The surgery went well and it took about 2 hours for me to wake up in recovery. I don't do well with meds so this was something Dr. Mohammad wanted to watch, so that I monitored carefully. Once, I woke up enough, I was moved up to 10NW to a room.
Recovery Room
Post-Op Night 1:
Surgery ended around 6pm, I left recovery around 8pm and was up to my room soon after. I was doing pretty well, more awake initially then usual. My mom left around 10pm since it had been a long day and she needed her rest as well. It didn't take more than a few hours and the pain was out of control. As the anesthesia wore off I realized only my non-op leg was numb. My op leg was no longer numb, major spasms were beginning, and alarms were beginning to go off because my breathing would drop very low. I was informed about the muscle spasms, but didn't realize how intense they were. Epidural meds would not have helped regardless, so Valium is used post-op to help to relax the muscles. The pain team was called to assess the situation. We were going to try a different combination of epidural meds. With EDS, local anesthetics can be insensitive and not work well, which I had a history with, but since one leg was numb, some of the meds were working, so we were going to try something else. We gave that a couple hours and no luck, so we tried, yet another combination of epidural drugs and again no luck. I was still having severe pain and couldn't keep my O2 sats up. A couple of my favorite nurses, Megan & Cheryl, were there the whole time helping to ease the pain and comfort me. After 3 tries with the epidural drugs, Methadone, was going to be tried. It is used for opiate addiction, but also used in an OR setting for acute pain management. I needed an EKG prior though because of my vitals and the reactions Methadone can have on your body. Once that was cleared we tried the Methadone, but again, no luck. After some good efforts, the pain team decided to put me on a PCA pump or personally controlled analgesic. It allows you to give a short "burst" of meds at a controlled rate. They again changed the epidural drugs, taking the narcotics out to use for the PCA, try some different anesthetics for the epidural, and I was put on oral valium for the spasms. The IV valium clears your system faster than oral, so we were going to try that as well. At this piont, I had all 3 IV's in use, the epidural and PCA buttons, O2 blow-by mask and other lines for monitoring vitals. It was a very scary and painful experience, but I was glad the pain was finally at a point of control. I was exhausted at this point and in need for some zzz's.
Very Out of It
Post-Op Day 1-2:
Incision 8.5in
The first night was rough, but I was able to finally get a bit of rest. I was only able to sip some Sprite and snack on Cheerios. My appetite was definitely gone! I did have an IV of Nubain to help with nausea and pain, so I kept getting tangled in all my lines. My mom told a friend of mine she was a bit afraid to touch me because of all the lines and wires. I would be staying in bed till at least Day 3 when the epidural would come out and I would get clearance for some PT and minimal movement. Night 2 I felt up to some food, so ordered a favorite, chicken nuggets and fries, but when it came I could barely look at it, so my nurse, Megan, got me some more Cheerios and Sprite. Night 2 was not nearly as bad as my first night, but did have spikes in pain and continued spasms. The first couple days were a bit rough for me adjusting and finding the right meds. Of course, Millis stopped by numerous times and even changed my bandages. I was also visited by my surgery sista, Sarah Zimman and her BF, D! She brought me some goodies and plush puppy that smelled like cinnamon! It was nice to finally meet and chat for a bit :) It definitely lifted my spirits!!!
Sarah Zimman & I
Post-Op Day 3-4:
I was moved to a private room Day 3 which was a bit nice, so that I could get some more rest. I was able to keep my favorite nurses! Since my pain was better controlled we transitioned to more oral meds and the epidural was shut off. Later on, the epidural was able to be removed, as well as the catheter. When the catheter was removed the tape left blisters and a nice wound. I tried using a bed pan, but the pressure was so intense on my leg, I couldn't control the pain, so orders were able to be changed so that I could move from bed to bathroom only. I was not able to take a shower yet, but did get a bed-bath and had my hair washed. It felt great to be cleaned up a bit, new gown, etc. I definitely felt more relaxed! It also felt good to get up, even if it was just to move a few feet. I still had no appetite, but tried to keep snacking on some foods like yogurt and Cheerios to help with taking all the meds and the nausea. I did get some rest on and off. Docs and nurses were in and out most of the day, especially since I was having problems with pain. My incision site became more reddened and inflammed. It was watched closely because of my history with post-op infections and healing issues. Fortunately, my incision has not become infected and has looked great since! After only one night in my own room, I was moved to yet another room because the single was needed for a patient with a potential infection. My new roomie and her mom were great! Unless one of us was having a procedure, etc., we left the curtains pulled-back and chatted back and forth.
Day 4 was my first day for PT, which surprisingly went well. I was a little shakey at first on my crutches, but was able to find a balance. I was able to walk the parallel bars and use my crutches a bit. PT would be back again for Round 2 later on :)
PT Round 1
PT Round 2
Post-Op Day 5-6:
By day 5, I was getting around pretty well. Mobility was a lot better than I had anticipated. At this point, the PCA and epidural were shut off, no catheter, IV's were still in, but locked and I was on oral meds only. Pain was under good control with highs and lows to be expected. I still didn't have an appetite, but was doing my best to eat something. At one point, I asked my mom to get me a McDonald's shake :) PT came back for their last visit, which I passed and was even allowed to take a shower! So excited to take a real shower! The small things definitely count, when going through these processes. Since I did not have an appetite I never felt constipated or the urge to have a BM, but unfortunately ended up having a suppository and enema to make sure I was "cleaned out" before going home. After a shower and a shake, I was ready to go home! We would be flying out the next morning, so my discharge would be early. I saw Millis the day before because he was leaving for a conference, but did see his fellows for any last minute questions. Fortunately that night I got my fav nurse, Cheryl, and she was able to help with so much, especially with the early morning discharge. I left the nurses a Thank You note and was able to give Cheryl a big hug before leaving in the taxi. Cheryl and Megan had helped me through some of my lowest points and Children's and I was so grateful for their support and compassion.
Passed PT - Cruising the Hall :)
I spent from Monday morning till Sunday morning at Children's before flying back to Indy. Navigating the airport and flight was not comfortable at all and I was ready for my own bed to relax and sleep in. We landed in Indy around noon and by the time we got home I was exhausted and ready to see Chloe and sleep! I spent most of the afternoon sleeping with Chloe right by my side.
It was not the easiest experience. The surgery and recovery were different in so many ways. Children's is #1 and for a reason. The care is unmatched. Unfortunately, my pain was not as low as anticipated, but they were great in dealing so quickly to make me more comfortable. The pain has a lot to do with my nerve disorder as well as fixing a failed surgery and having so much damage already. I expect my left hip will go much smoother!
It was also difficult because my mom and I had been fighting nearly the entire time and were not seeing eye to eye, which made recovery more difficult and something I won't forget. I appreciate all her love and support, but I was very hurt and vulnerable and attacked on top of that. Things have calmed down and we seem to be getting along, but have not talked about it much. I hope things resolve in the future.
I love Children's!!!
Surgery Day:
My Surgery was Monday, 20 June 2011, at Children's Hospital of Boston in Boston, MA. I discussed my Pre-Op and testing in my prior post, so won't really go into detail about that. The couple days prior to surgery was not really as fun as I anticipated because I was very nauseous due to a UTI and more so, my nerves. I had to arrive at Children's at around 10:30am for surgery to hopefully start at noon. I was still nauseous, but a bit better, but still nervous for surgery. We arrived and signed-in at admitting. I watched Madagascar and waited to be seen by one of the nurses for some quick vitals and lab repeat. I was cleared and they were ready for my just prior to noon. Wow, I thought that was quick. My mom and I were taken up so that I could change and get prepped. It was so cold, so I quickly changed and got warmed up with some blankets. It took a bit longer than I expected, but soon the nurses, Millis and my anesthesiologist were swarming and ready to go. I met Dr. Millis's fellow, Dr. Hayworth, who came in to discuss the procedure, last minute questions, etc. He was very good to look at as well ;) He signed my leg and then it was the Anesthesiologist's turn. My anesthesiologist was Dr. Shoiab Mohammad and was AMAZING! Millis typically hand-picks his teams depending on the case and Dr. Mohammad was very experienced with complicated pain cases, such as mine. In particular, my nerve issues and pain from previous procedures. He explained everything and told me what he was doing every step of the way. He had a bit of a hard time finding a vein. I am not an easy stick and was dehydrated, which did not help the matter. Once the IV was in, I got some meds to relax and we were off to the OR.
Once in the OR, I was transferred to the OR table to be prepped, have my epidural put in, and then off to sleep. The epidural was a new experience for me. I was awake, with some mild meds for relaxation. It was very cold, but the nurses did there best to warm me up and keep me calm. I had to sit-up and make a "C" with my back. I hugged some pillows and a nurse hugged me to keep me still so the best placement of the catheter could happen. My back was scrubbed and prepped and the epidural placed. I finally got to lay down and was covered with warm blankets. We waited a few minutes so that we could test the epidural. After about 10 minutes, both legs were numb and we were good to go! Off to sleep.
The surgery was expected to last about 3 hours, but ended up a little over 4 hours because Millis is very particular in what he likes, which is always good when you are the patient. My right femur was rotated almost 25 degrees internally. The surgery went well and it took about 2 hours for me to wake up in recovery. I don't do well with meds so this was something Dr. Mohammad wanted to watch, so that I monitored carefully. Once, I woke up enough, I was moved up to 10NW to a room.
Recovery Room
Post-Op Night 1:
Surgery ended around 6pm, I left recovery around 8pm and was up to my room soon after. I was doing pretty well, more awake initially then usual. My mom left around 10pm since it had been a long day and she needed her rest as well. It didn't take more than a few hours and the pain was out of control. As the anesthesia wore off I realized only my non-op leg was numb. My op leg was no longer numb, major spasms were beginning, and alarms were beginning to go off because my breathing would drop very low. I was informed about the muscle spasms, but didn't realize how intense they were. Epidural meds would not have helped regardless, so Valium is used post-op to help to relax the muscles. The pain team was called to assess the situation. We were going to try a different combination of epidural meds. With EDS, local anesthetics can be insensitive and not work well, which I had a history with, but since one leg was numb, some of the meds were working, so we were going to try something else. We gave that a couple hours and no luck, so we tried, yet another combination of epidural drugs and again no luck. I was still having severe pain and couldn't keep my O2 sats up. A couple of my favorite nurses, Megan & Cheryl, were there the whole time helping to ease the pain and comfort me. After 3 tries with the epidural drugs, Methadone, was going to be tried. It is used for opiate addiction, but also used in an OR setting for acute pain management. I needed an EKG prior though because of my vitals and the reactions Methadone can have on your body. Once that was cleared we tried the Methadone, but again, no luck. After some good efforts, the pain team decided to put me on a PCA pump or personally controlled analgesic. It allows you to give a short "burst" of meds at a controlled rate. They again changed the epidural drugs, taking the narcotics out to use for the PCA, try some different anesthetics for the epidural, and I was put on oral valium for the spasms. The IV valium clears your system faster than oral, so we were going to try that as well. At this piont, I had all 3 IV's in use, the epidural and PCA buttons, O2 blow-by mask and other lines for monitoring vitals. It was a very scary and painful experience, but I was glad the pain was finally at a point of control. I was exhausted at this point and in need for some zzz's.
Very Out of It
Post-Op Day 1-2:
Incision 8.5in
The first night was rough, but I was able to finally get a bit of rest. I was only able to sip some Sprite and snack on Cheerios. My appetite was definitely gone! I did have an IV of Nubain to help with nausea and pain, so I kept getting tangled in all my lines. My mom told a friend of mine she was a bit afraid to touch me because of all the lines and wires. I would be staying in bed till at least Day 3 when the epidural would come out and I would get clearance for some PT and minimal movement. Night 2 I felt up to some food, so ordered a favorite, chicken nuggets and fries, but when it came I could barely look at it, so my nurse, Megan, got me some more Cheerios and Sprite. Night 2 was not nearly as bad as my first night, but did have spikes in pain and continued spasms. The first couple days were a bit rough for me adjusting and finding the right meds. Of course, Millis stopped by numerous times and even changed my bandages. I was also visited by my surgery sista, Sarah Zimman and her BF, D! She brought me some goodies and plush puppy that smelled like cinnamon! It was nice to finally meet and chat for a bit :) It definitely lifted my spirits!!!
Sarah Zimman & I
Post-Op Day 3-4:
I was moved to a private room Day 3 which was a bit nice, so that I could get some more rest. I was able to keep my favorite nurses! Since my pain was better controlled we transitioned to more oral meds and the epidural was shut off. Later on, the epidural was able to be removed, as well as the catheter. When the catheter was removed the tape left blisters and a nice wound. I tried using a bed pan, but the pressure was so intense on my leg, I couldn't control the pain, so orders were able to be changed so that I could move from bed to bathroom only. I was not able to take a shower yet, but did get a bed-bath and had my hair washed. It felt great to be cleaned up a bit, new gown, etc. I definitely felt more relaxed! It also felt good to get up, even if it was just to move a few feet. I still had no appetite, but tried to keep snacking on some foods like yogurt and Cheerios to help with taking all the meds and the nausea. I did get some rest on and off. Docs and nurses were in and out most of the day, especially since I was having problems with pain. My incision site became more reddened and inflammed. It was watched closely because of my history with post-op infections and healing issues. Fortunately, my incision has not become infected and has looked great since! After only one night in my own room, I was moved to yet another room because the single was needed for a patient with a potential infection. My new roomie and her mom were great! Unless one of us was having a procedure, etc., we left the curtains pulled-back and chatted back and forth.
Day 4 was my first day for PT, which surprisingly went well. I was a little shakey at first on my crutches, but was able to find a balance. I was able to walk the parallel bars and use my crutches a bit. PT would be back again for Round 2 later on :)
PT Round 1
PT Round 2
Post-Op Day 5-6:
By day 5, I was getting around pretty well. Mobility was a lot better than I had anticipated. At this point, the PCA and epidural were shut off, no catheter, IV's were still in, but locked and I was on oral meds only. Pain was under good control with highs and lows to be expected. I still didn't have an appetite, but was doing my best to eat something. At one point, I asked my mom to get me a McDonald's shake :) PT came back for their last visit, which I passed and was even allowed to take a shower! So excited to take a real shower! The small things definitely count, when going through these processes. Since I did not have an appetite I never felt constipated or the urge to have a BM, but unfortunately ended up having a suppository and enema to make sure I was "cleaned out" before going home. After a shower and a shake, I was ready to go home! We would be flying out the next morning, so my discharge would be early. I saw Millis the day before because he was leaving for a conference, but did see his fellows for any last minute questions. Fortunately that night I got my fav nurse, Cheryl, and she was able to help with so much, especially with the early morning discharge. I left the nurses a Thank You note and was able to give Cheryl a big hug before leaving in the taxi. Cheryl and Megan had helped me through some of my lowest points and Children's and I was so grateful for their support and compassion.
Passed PT - Cruising the Hall :)
I spent from Monday morning till Sunday morning at Children's before flying back to Indy. Navigating the airport and flight was not comfortable at all and I was ready for my own bed to relax and sleep in. We landed in Indy around noon and by the time we got home I was exhausted and ready to see Chloe and sleep! I spent most of the afternoon sleeping with Chloe right by my side.
It was not the easiest experience. The surgery and recovery were different in so many ways. Children's is #1 and for a reason. The care is unmatched. Unfortunately, my pain was not as low as anticipated, but they were great in dealing so quickly to make me more comfortable. The pain has a lot to do with my nerve disorder as well as fixing a failed surgery and having so much damage already. I expect my left hip will go much smoother!
It was also difficult because my mom and I had been fighting nearly the entire time and were not seeing eye to eye, which made recovery more difficult and something I won't forget. I appreciate all her love and support, but I was very hurt and vulnerable and attacked on top of that. Things have calmed down and we seem to be getting along, but have not talked about it much. I hope things resolve in the future.
I love Children's!!!
Friday, June 17, 2011
Surgery Pre-Op & Testing
Yesterday I had my pre-op day and I had to return today for some additional testing before being cleared for surgery. My mom and I flew into Boston around 8am. We had a 6am flight out of Indy and were at the airport even earlier than that. I had finished my last summer class assignment the night before by giving my presentation early. It was real tight getting everything in prior to leaving, especially since summer classes are accelerated already! Let's just say that I was glad to have that part over. I had some last minute things to complete, but spent most of the night giving my aussie, Chloe, some individual attention with tummy rubs and cuddle time. I missed her before I even left. I even ask for pictures to be texted to me throughout the day. This is the 2nd longest time I have been away from her and I miss her like crazy. I ended up not going to sleep at all until the flight.
Yesterday was a VERY long day. Once we landed in Boston we dropped our bags off at the Devon Nicole House. It is housing for Children's patients who are coming from more than 50 miles and offers and more "homey" and affordable place to stay, especially for extended period of times. Once we dropped off our bags, we headed straight to Children's to start all the appointments. It was a little backwards from the traditional process that they use. I started with my pre-op appointment in the Ortho Department. I met Jill while I was waiting for my appointment. She is sooo sweet! She had follow-up appointments that day and after we were both done had plans to go shopping and out to eat. The wait was not long at all and then it was my turn. To my surprise Dr. Millis and Dr. Novias were not there because they were in NY, so my appointment would be with the PA, Erin, who I had never met. I was a little confused at first because when Dr. Millis and I had communicated via email, I was under the impression that he would be there. I still had questions nonetheless, so Erin did her best to answer my questions for about a half hour. A couple will have to wait for prior to surgery because she was not as familiar with my case, concerns, etc.
Questions I asked were:
How long will the surgery take? Approx. 3 hours
How long am I expected to be In-Patient? 4-5 days is expected
What type of hardware will be used? Blade-plate and screws
When does the hardware come out? Depends on bone healing, so can be as early as 4 months or 8+ months.
When I need my LPAO, can the right femoral osteotomy hardware hardware be removed at the same time? Yes
Will I need a scope in addition to the FO to repair the torn labrum? Possibly. It will depend on how I feel after surgery and if the ostetomy is able to take pressure off the tear. If it can not or the tear is large enough to protrude and catch in the joint then it can be done locally with Dr. Maiers. The last scope my labrum was soft and had already sustained 3 tears. There is a 50/50 chance of needing another scope.
Will I be using a CPM during recovery? It will depend on if Dr. Millis thinks I will benefit from one because of potential scar tissue build-up or stiffness.
What are my nerve & pain precautions? Anesthesiology highly recommends an epidural because of the nerve hypersensitivity and the better ability to control pain, etc. A pain team will be following up with care as well. I will also take Lyrica the morning of my surgery to help prevent flairs as well.
What will be my weight-bearing restrictions? 1/6th till 4 weeks, so about 15-25lbs at most.
Driving? Can not drive till I am able to lift my leg. During surgery the muscle is retracted and "shut-downs" for awhile. So, until it begins firing and some strength returns then it will feasible to drive.
EDS precautions? Left hip and shoulder have been increasingly more unstable. We are going to work on things one at a time, but probably during the first weeks I can work on rehab to strengthen my shoulder which will hopefully help until it can be addressed later on. The left hip will be addressed during some post-ops and will discuss options later. This was harder because I really wanted to talk to Millis about this, but will hopefully have a few minutes prior to surgery to mention my concerns.
Dr. Maiers will be doing my local follow-up so I will see Maiers for wound-care(I always have healing issues and get post-op infections because of my EDS), a follow-up at 1 and 2 months and then will be back at Children's for a 3 month follow-up.
After Ortho I went to PT. PT was super-quick because it was going over proper form with my crutches. She said I am a "Pro." You have to be for as many surgeries as I have had :) Then I was off to Pre-Admitting. This is where they double check your paperwork, do some vitals and pre-op labs, go over the medical history and see an anesthesiologist for a consult. This was not too long. Everything was fairly routine, except the Anesthesiologist wanted an Echo as a baseline because of my EDS. She just wanted to make sure there was not any abnormalities or issues they needed to be aware of. She was able to get me in the next morning. After some routine labs we were done for the day. I had to be back at Children's the following morning for an Echo and to check with the Blood Center about the blood I banked in Indy.
After about 5 hours at Children's we were off to meet up with Jill and shop Newbury Street, the Rodeo Drive of Boston. It definitely was!!! The stores were amazing. They had everything from Chanel, The North Face, Pet Boutiques and Forever 21. There was also some great places to eat. We ate a snack at a local bar and the home-style nachos were amazing! We all got to talk a bit and learn more about Jill and she explained some different things about herself as well as EDS. Once the shops started to close down and we were wiped we headed back to Jill's hotel. WE grabbed dinner at this Irish bar and restaurant near her hotel. After that we parted ways because we were wiped! Jill and I probably overdid it with walking and being on our feet. I definitely felt it the next morning :) I fell asleep without a problem!
This morning I had to get-up and go get an Echo in the Cardiology Department. It took about an hour because it was a baseline and needed to be thorough and get lots of measurements. I was able to watch Sweet Home Alabama during the test. The Cardiologist thought the images looked good and I was cleared for surgery!!! It was also nice to know that my heart looked good for now. We checked with the Blood Center about my banked blood and confirmed that he had made it to Children's and was ready for my surgery. Again, we headed about to the house, freshened up and headed out into Boston. We headed to the Prudential Center for shopping and dinner because it was expected to rain. On the way I got a call from the surgery scheduler and that my surgery had been moved up. Mind you that I had just found out about an hour before the time and it was already being moved. lol When Dr. Millis prefers it a certain way, he gets it a certain way ;) It was another long day and my hip have definitely been worn out. I am looking forward to doing the Trolley Tour through the city this weekend and see all the historical sites and some fun shops. Of course, we have to leave after the parade for the Bruins Stanley Cup win!! I don't mind sleeping in a bit and watching the parade on TV. I am not sure if I would be able to handle a lot of people, walking, etc., I am pretty worn out.
I do look forward to some fun this weekend. I have been overwhelmed dealing with everything and have so badly needed a break. I am uncertain if I will actually get it though because my mom has been so hard on me and we clash heads a lot. I just so badly want some fun and everything has been a problem lately with her, so its hard to enjoy anything. I don't know if I can handle a continuous beatdown. I am already very anxious about the surgery. I hope it helps and there is some good news because I don't know if I handle anymore bad news.
Jill and Me
Yesterday was a VERY long day. Once we landed in Boston we dropped our bags off at the Devon Nicole House. It is housing for Children's patients who are coming from more than 50 miles and offers and more "homey" and affordable place to stay, especially for extended period of times. Once we dropped off our bags, we headed straight to Children's to start all the appointments. It was a little backwards from the traditional process that they use. I started with my pre-op appointment in the Ortho Department. I met Jill while I was waiting for my appointment. She is sooo sweet! She had follow-up appointments that day and after we were both done had plans to go shopping and out to eat. The wait was not long at all and then it was my turn. To my surprise Dr. Millis and Dr. Novias were not there because they were in NY, so my appointment would be with the PA, Erin, who I had never met. I was a little confused at first because when Dr. Millis and I had communicated via email, I was under the impression that he would be there. I still had questions nonetheless, so Erin did her best to answer my questions for about a half hour. A couple will have to wait for prior to surgery because she was not as familiar with my case, concerns, etc.
Questions I asked were:
How long will the surgery take? Approx. 3 hours
How long am I expected to be In-Patient? 4-5 days is expected
What type of hardware will be used? Blade-plate and screws
When does the hardware come out? Depends on bone healing, so can be as early as 4 months or 8+ months.
When I need my LPAO, can the right femoral osteotomy hardware hardware be removed at the same time? Yes
Will I need a scope in addition to the FO to repair the torn labrum? Possibly. It will depend on how I feel after surgery and if the ostetomy is able to take pressure off the tear. If it can not or the tear is large enough to protrude and catch in the joint then it can be done locally with Dr. Maiers. The last scope my labrum was soft and had already sustained 3 tears. There is a 50/50 chance of needing another scope.
Will I be using a CPM during recovery? It will depend on if Dr. Millis thinks I will benefit from one because of potential scar tissue build-up or stiffness.
What are my nerve & pain precautions? Anesthesiology highly recommends an epidural because of the nerve hypersensitivity and the better ability to control pain, etc. A pain team will be following up with care as well. I will also take Lyrica the morning of my surgery to help prevent flairs as well.
What will be my weight-bearing restrictions? 1/6th till 4 weeks, so about 15-25lbs at most.
Driving? Can not drive till I am able to lift my leg. During surgery the muscle is retracted and "shut-downs" for awhile. So, until it begins firing and some strength returns then it will feasible to drive.
EDS precautions? Left hip and shoulder have been increasingly more unstable. We are going to work on things one at a time, but probably during the first weeks I can work on rehab to strengthen my shoulder which will hopefully help until it can be addressed later on. The left hip will be addressed during some post-ops and will discuss options later. This was harder because I really wanted to talk to Millis about this, but will hopefully have a few minutes prior to surgery to mention my concerns.
Dr. Maiers will be doing my local follow-up so I will see Maiers for wound-care(I always have healing issues and get post-op infections because of my EDS), a follow-up at 1 and 2 months and then will be back at Children's for a 3 month follow-up.
After Ortho I went to PT. PT was super-quick because it was going over proper form with my crutches. She said I am a "Pro." You have to be for as many surgeries as I have had :) Then I was off to Pre-Admitting. This is where they double check your paperwork, do some vitals and pre-op labs, go over the medical history and see an anesthesiologist for a consult. This was not too long. Everything was fairly routine, except the Anesthesiologist wanted an Echo as a baseline because of my EDS. She just wanted to make sure there was not any abnormalities or issues they needed to be aware of. She was able to get me in the next morning. After some routine labs we were done for the day. I had to be back at Children's the following morning for an Echo and to check with the Blood Center about the blood I banked in Indy.
After about 5 hours at Children's we were off to meet up with Jill and shop Newbury Street, the Rodeo Drive of Boston. It definitely was!!! The stores were amazing. They had everything from Chanel, The North Face, Pet Boutiques and Forever 21. There was also some great places to eat. We ate a snack at a local bar and the home-style nachos were amazing! We all got to talk a bit and learn more about Jill and she explained some different things about herself as well as EDS. Once the shops started to close down and we were wiped we headed back to Jill's hotel. WE grabbed dinner at this Irish bar and restaurant near her hotel. After that we parted ways because we were wiped! Jill and I probably overdid it with walking and being on our feet. I definitely felt it the next morning :) I fell asleep without a problem!
This morning I had to get-up and go get an Echo in the Cardiology Department. It took about an hour because it was a baseline and needed to be thorough and get lots of measurements. I was able to watch Sweet Home Alabama during the test. The Cardiologist thought the images looked good and I was cleared for surgery!!! It was also nice to know that my heart looked good for now. We checked with the Blood Center about my banked blood and confirmed that he had made it to Children's and was ready for my surgery. Again, we headed about to the house, freshened up and headed out into Boston. We headed to the Prudential Center for shopping and dinner because it was expected to rain. On the way I got a call from the surgery scheduler and that my surgery had been moved up. Mind you that I had just found out about an hour before the time and it was already being moved. lol When Dr. Millis prefers it a certain way, he gets it a certain way ;) It was another long day and my hip have definitely been worn out. I am looking forward to doing the Trolley Tour through the city this weekend and see all the historical sites and some fun shops. Of course, we have to leave after the parade for the Bruins Stanley Cup win!! I don't mind sleeping in a bit and watching the parade on TV. I am not sure if I would be able to handle a lot of people, walking, etc., I am pretty worn out.
I do look forward to some fun this weekend. I have been overwhelmed dealing with everything and have so badly needed a break. I am uncertain if I will actually get it though because my mom has been so hard on me and we clash heads a lot. I just so badly want some fun and everything has been a problem lately with her, so its hard to enjoy anything. I don't know if I can handle a continuous beatdown. I am already very anxious about the surgery. I hope it helps and there is some good news because I don't know if I handle anymore bad news.
Jill and Me
Monday, June 13, 2011
A Few Days Left
It is currently in the wee hours of Tuesday, June 14th, 2011. I will be leaving for Boston in about 48 hours. In about 12 hours I will be taking my summer class finals early, leaving only a presentation to do tomorrow night. I really wish these courses would have been offered in the fall because the Professors were nice and the classes were pretty interesting. I took Criminal Law and Bankruptcy Law which only leaves 2 classes, I believe, for my Paralegal Certification. I am hoping to finish those in the fall on a part-time status and work full-time during the day. That is my goal anyway, barring any complications from surgery or recovery. I am fairly concerned about my left hip and shoulder because they are becoming more and more unstable from the burden they have taken. I am hoping PT, Dr. Millis & Maiers, and myself will be able to workout a plan to safeguard my other joints while my right hip/leg heal. I will hopefully find that out on Thursday during my pre-op, etc. I have an entire list of questions and have been adding to them as different things come to mind.
I have felt very overwhelmed lately with trying to finish classes (why I took summer classes, I don't know!), getting my apartment "recovery friendly" and all the last minute things that go on with traveling, etc. I have barely had any time to relax or do anything for myself. I desperately want a break and not one that involves my bones or a stay at a hospital. I have literally gone non-stop for over 2 years with 5 surgeries during that window. I have either been in school, working, recovering from surgery, surgery during breaks or during school, working full-time during breaks to pay for surgery, etc. There has been little or no down-time to relax and at this point I am desperate for some TLC. There has been no trips, weekend getaways, concerts, nothing. I so badly want some time off. I sit here with tears rolling down my face as I write because I feel so overwhelmed. I am trying to stay positive, but I know this is not the last surgery because my left hip still needs to be addressed. There has been so many moments in which I want to cancel and avoid this all together. I have my doubts that I can keep doing this. I am giving all I have just to keep it together and get everything accomplished in the next hours. I am just hoping that I get to enjoy some time in Boston before surgery on Monday. I am planning to meet up with Jill Thursday for a bite to eat and shopping on Newbury St. I hope that some company and cute shops will bring my spirits up.
I have felt very overwhelmed lately with trying to finish classes (why I took summer classes, I don't know!), getting my apartment "recovery friendly" and all the last minute things that go on with traveling, etc. I have barely had any time to relax or do anything for myself. I desperately want a break and not one that involves my bones or a stay at a hospital. I have literally gone non-stop for over 2 years with 5 surgeries during that window. I have either been in school, working, recovering from surgery, surgery during breaks or during school, working full-time during breaks to pay for surgery, etc. There has been little or no down-time to relax and at this point I am desperate for some TLC. There has been no trips, weekend getaways, concerts, nothing. I so badly want some time off. I sit here with tears rolling down my face as I write because I feel so overwhelmed. I am trying to stay positive, but I know this is not the last surgery because my left hip still needs to be addressed. There has been so many moments in which I want to cancel and avoid this all together. I have my doubts that I can keep doing this. I am giving all I have just to keep it together and get everything accomplished in the next hours. I am just hoping that I get to enjoy some time in Boston before surgery on Monday. I am planning to meet up with Jill Thursday for a bite to eat and shopping on Newbury St. I hope that some company and cute shops will bring my spirits up.
Sunday, June 5, 2011
Boston or Bust
The last couple weeks have been stressful and the next 10 days will only be increasingly more stressful. As the spring classes ended, the summer session started only a few days later, leaving no time for a break. The first weekend of my summer session I spent with my Army National Guard unit to do our monthly training and medical mission. Although I am not physically able to do a lot, it is nice to be in a medical unit where I do have a job and can feel like I am contributing to the mission. And, of course, I do love my unit! I have some very close friends or family and we can make almost anything fun. The downside is that the weekends are very long and with trouble or no sleeping it becomes very draining. I am hoping that after surgery with less pain and better function life will begin to return to normal, I will be able to sleep and function more normally.
SPC. Heather Moon, SSG. Angela Darrall, SPC. Lauren Guieb, Me
My baby, Chloe, turned 2 this year! She has definitely matured a lot and we have bonded very closely. I love her soo much and definitely spoil her as often as I can. The 25th is her birthday and I had planned to get her some favorite treats at 3 Dog Bakery and some new toys. The weekend prior to her birthday I noticed some small, hard growths on the side of her lip, which had not been there just a few days earlier. Sunday morning I took her to Banfield Pet Hospital to see her vet. The vet did determine that they were not cysts, but tumors and highly recommended having them removed and biopsied because there were concerning. Also, since she would already be under anesthesia he suggested dental scaling to maintain her dental health, etc. I agreed and we scheduled Chloe for surgery, but unfortunately, it would be on her birthday. Wednesday she went in for her surgery and dental cleaning. The surgery went great, removed the tumors, stitched her up and sent her home with some pearly whites. She would have stitches in for 2 weeks. A few days later I was trimming her nails and noticed another growth, but on her paw. My stomach sank. I felt so terrible because she may have to go through this process again and that the biopsies may not come back with good results. The following morning we were back at the vet. The vet determined that it was an interdigital cyst and not related to the other growth. It was an inflammatory reaction that is very common in dogs, especially with longer coats. Back home we went. That evening I noticed Chloe digging and scratching at her ear. I examined her ear and it was obvious that she had a bad ear infection. I tried cleaning it out and holding warm compresses on it because I did not have any meds and we would have to return to the vet again in the morning. Poor pup was so miserable. I held and tried to comfort her all night. Sunday morning when I woke to get ready to take her to the vet I noticed her making a strange noise and her whole body was convulsing. I tried waking her, but her eyes were rolled in the back of her head. Chloe had just had a seizure. I couldn't believe it and just felt so horrible for her. What a terrible week! Chloe and I headed back to the vet for the 4th time in 8 days. The vet took a culture of the discharge in her ear. It was definitely an ear infection because of the overgrowth of yeast. It was probably caused by the post-op antibiotics throwing of the yeast/bacteria balance. He looked at her paw as well. Chloe was given meds for the ear and paw. One of the meds would help with both the inflammation in the ear as well as the paw. We also discussed her seizure. He determined it was probably caused by the cumulative period of stress. It is not uncommon for high-anxiety dogs such as Aussies and Border Collies to have a seizure after a high or cumulative period of stress. It is something we would just have to be cognizant of. We were also able to find out the results of the biopsy which were negative, benign tumors. Whew! What a relief! I couldn't bare the thought of losing Chloe. Again, we headed home, armed with meds and would hopefully not return till the follow-up for the stitches. Within a few doses Chloe was doing significantly better and after a couple of days she got her spunk back!
Chloe's 2nd Birthday-May 25th
I am so glad that Chloe is on the mend because there would be no way that I could leave her sick in Indy while I would be in Boston. She is my fur-child and I need to make sure she is okay. I am just glad that she is feeling so much better. I hate seeing her in pain and sick. I only have a week and a half before I leave for Boston. There is so much left to do and yet, I am so anxious about another surgery. You think I would be use to it by now being that this one will be #8! I will be finishing my summer session a week early so I will be taking my finals, giving a presentation and turning in papers/projects before I leave next Thursday morning. Also, I need to prep and clean my apartment, pick up last minute items, clean, pack, and go to a couple last-minute doctor appointments. One will be to an ophthamologist because my "good" eye suddenly has periods of blindness or will be completely unfocused. I am worried it is related to my EDS. So, I will be having it checked this Friday just for my peace of mind.
Although my last few days prior to leaving are maxed with things to get done, I can not stop thinking about surgery. For the first time this weekend I thought about canceling it altogether. I get so anxious prior to surgery, but especially prior to major ones such as my RPAO and this FO. This is also more nerve-racking for me because this is a surgery to attempt to fix what was botched 2 years ago. This will also be different because my care team is aware of the EDS and consistent healing issues, but will also be having to deal with pain management problems because of the nerve hypersensitivity and the deterioration of my hip. I know I am in great hands with Dr. Millis and Children's, but I am still terrified. I know that my hip will never be perfect, nor will I ever be pain free but, it is hard because my case does baffle my doc and at best my hip may be 65-70%. This is a C-D grade range. I never liked anything below a B in school and especially when it involves my health! I also may need another surgery, maybe 2, to address additional issues. I will probably need to have a scope to repair my labrum again, but would be done locally with Dr. Maiers. That will be determined during recovery and how the hip heals. I will need to hardware removed after the bone heals, around a year minimum. This only addresses the right hip. During these last few years my left hip has had to compensate so much it has deteriorated. It is less stable, weaker, has chronic bursitis and consistent pain. This will need to be addressed within the next year because it is clear the scope is no longer helping the problems. This will be discussed during my pre-op appointment when we go over the game plan.
I am becoming increasingly more anxious as the days, hours go by. I was watching one of my favorite shows, House, and they were putting a girl to sleep for a surgery and the thought of that process for my surgery made my stomach flip. I have had moments where I don't want to do this; I don't think I can do this; Should I cancel? I have moments of doubts and wonder will this work? Should I cut my losses and quit now? I know part of this is anxiety and part of this is because I trusted a doc originally and it ended up disastrous. I know I will be in great hands, but it doesn't take away the history, the feelings, the pain. I just hope that this greatly improves pain and function. And I hope that I don't do this and then still need a re-RPAO or THR. That is probably my worst fear.
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