I left off with the expectation of a blood patch the following day (Wednesday)! There was a change of plans! I decided that I wasn't sold on the idea of the patch and because I already had another IV in I decided to take the last conservative measure available-a caffeine drip! Definitely not one of my finer decisions but at least I knew that I had done everything possible to avoid a blood patch! The caffeine drip consisted of 500mg of caffeine given over 1 hour! Imagine drinking 10 large red bulls in that time frame! Of course with that amount of caffeine going directly into my blood stream I was hooked up to the monitors. For the first time in 6 days my monitor beeped constantly. By this time my mom and I had become so accustomed to the beeping from the monitors that it didn't alarm me! However, for the first part of my drip my nurse Chris was back in my room every other minute. My heart rate jumped to 298 at one point and then stayed consistently at 170! I was apparently talking non-stop and my whole body was shaking. Chris commented on how I hadn't talked that much the whole week that I had been there! During the drip I felt a difference in my headache however the effect didn't last long! Towards the end of the drip I was sick and the headache came back! The after effects of having that much caffeine in such a short amount of time were crazy and I felt horrible for the rest of the day. Caffeine drip was a failure. Later that day I had an x-ray (standard before discharge)! Up until the x-ray I was surviving on 2 Tylenol every 4 hours for pain! This is pretty unusual with PAO patients as most are on heavy narcotics for weeks after they leave the hospital. During the x-ray the tech pulled my toes inward too quickly! It definitely fired up some muscles. My pain got worse for the next couple of days but has settled down again!
Because the caffeine drip failed it was now clear that my only option was a blood patch-I went ahead with it on Thursday. They use a sedative so that I am able to tell the doctors how I feel during the procedure. I am very sensitive to anesthesia and felt sick for the remainder of the day. A lot of people feel immediate relief from a blood patch however it can take up to 2 days for the full effects! Due to my sensitivity it was hard to determine if the blood patch had worked. I woke up on Friday with a pretty severe headache but a noticeable difference. During the days leading up if I sat up past 15 degrees I would have a migraine x10 and the room would spin instantly. Friday I was able to sit up despite the headache! Because I hadn't been out of bed in 11 days I was very eager to get to PT and graduate! Originally I was to be discharged on Saturday but instead I graduated PT in 10 minutes and left on Friday! We drove to CT to stay with my grandma for the night to break up the trip!
I woke up this morning and reached up for the trapeze to readjust my position! Apparently my mind is still in the hospital because there was no trapeze. I also could have sworn someone came
in to check my vitals at 4am! Hopefully soon I readjust to life at home!
I have my post-op appointment in 4.5 weeks! It's strange that my appointment is so soon! The first post-op is scheduled for 6 weeks. Because I was in the hospital for close to 2 weeks my awareness of time is a bit off. I will make a trip up to 10 Northwest to visit my nurse! Hopefully he is working that day!
For those of you considering/preparing for PAO surgery:
Despite my setback with the epidural headache (less than 1% chance) I can honestly say that I already feel good about my decision to have the surgery! It is hard and painful at times! It is stressful. However, I already notice an improvement in my hip and have no regrets! The right hip still needs to be done and I now have a better understanding of what to expect. I will be better prepared and am looking forward to living a life free of hip pain!
*I will write a post later with helpful tips!
I cannot begin to express how amazing Children's Hospital of Boston is and the team of surgeons and nurses that take care of you! They truly go out of their way to make you comfortable even during the difficult times. My surgeon visited me everyday he was there and on the days he was out of town my other surgeon stopped by for a visit! I was also visited by one of the fellowship surgeons 2-3 times a day and he was very supportive and comforting through my complications. The nursing staff is incredible with great personalities-each is nicer than the next! I was fortunate to have one nurse for the majority of my stay-Chris! He was helpful in so many ways and I am so happy that he will be there to help me through my RPAO as well!
If you are still in search of a PAO surgeon I highly recommend the PAO surgeons at Children's (Dr. Millis and Dr. Kim) I can't say enough positive things about the hospital and it's staff!
To everyone who has called, sent flowers, chocolate covered strawberries, and cards over the past 2 weeks:
Thank you so much! I can't even begin to express how much I appreciated everything! There were a lot of stressful times during the last 11 days and it was very uplifiting to be in a room filled with beautiful flowers and to know that I have a lot of people who love and care about me! I arrived home today to balloons from my dad, brother and puppies! That definitely put a smile on my face! It's great to know that I have the most fabulous support system!
A special thanks to my amazing mom! I couldn't have gotten through the past 11 days without you! I can't even begin to express my appreciation for everything you have done! From running around Boston getting me food to sleeping on a cardboard pullout for 8 nights! I can't imagine what it must have been like for you to have to put up with me 24 hours a day during my emotional breakdowns and negative spirits! Not to mention what it feels like to be on the sideline now that I am 20 and make my own medical decisions! I am sorry for the stress that I have caused you during our hospital stay! I am so thankful that I had you there with me the whole time! I love you so much! At least we only have 1 more PAO to go ; )
*I was a little shocked when I saw the size of the 2 fluff balls I left 3 weeks ago! Mick and Roo are considerably bigger now but are absolutely gorgeous dogs!
I will now begin on the very long road to recovery-of course I will be doing it in style with my pink custom designer crutches!!
I also want to thank my Hip Chicks! Your support leading up to and during my recovery has been so helpful!
I love reading how you already feel a difference in your hip, even though it will be a long recovery, but it is all going to be worth it. It really helps me out. I keep telling myself that I can do this and then reading wonderful things like this really helps. I know that once I can do mine, I hopefully will be able to say the same thing.
ReplyDeleteI couldn't believe it either that you were already down to taking 2 Tylenol that soon. It just show that you were living in a lot of pain before and have a high pain tolerance. You are really strong.
I had a mental imagine of you talking like 90 miles per minute when you were on the caffiene drip. That would have made a great video. But I bet you did crash hard when it wore it off. That wouldn't not have been fun. And then it was only a temporary fix. But I am glad to hear that your headaches are lessening up. Headaches/migraines are miserable. I get them on occasion and I am no use whatsoever. I can't function at all.
Your incision looks really good. And all the balloons and flowers and yummy strawberries covered in chocolate made me hungry for some. You do have wonderful support. Something that will be wonderful to have during all of this. And your puupies are so cute. I just want to give them a big hug. They are so fluffy and adorable.
Get some rest and don't overdo it.