January 9, 2012
Happy 2012, my dear friends! I hope the new year is treating you all well.
As you may have gathered from the past two entries my mama posted, 2011 went out with one last adventure for me.
Although central line placements are typically a same-day surgery, given my past history of complications, I packed a small (well, actually rather large!) bag to take to the hospital the day of my procedure, just incase. The surgery itself went well enough, so I hear. But as I began to wake up, I was unable to move at all! (Incidentally, I also REALLY wanted to dance with Gene Kelly. I suspect this was not a side effect of the anesthesia, but more from my watching “Singin’ in the Rain” the night before. In fact, this feeling has yet to subside.) You may remember my mentioning in previous posts that I sometimes have paralysis following anesthesia. Each incident has been a bit different in presentation and severity. Once it took an entire week to wear off. But this most recent paralysis was certainly my most severe, as all of my joints were locked in place, and I couldn’t even turn my head. It was really very painful.
I am so thankful that the procedure took place at Children’s Hospital. Overall, I just feel more comfortable in this setting. The anesthesiologist was absolutely wonderful, as were my nurses. They were very diligent in keeping me as comfortable as I could be. And I was allowed to have my parents with me too, a luxury I very much appreciate after having to be by myself through recovery following my last procedure.
The same-day surgery center closed at 9:00 p.m., and so I was admitted. There was some question about which floor to send me to, but they settled on the neurology floor. When I woke up in the night, I realized I was beginning to be able to move my legs. And by morning, I could walk! Thank goodness! Before being discharged, the attending doctor stopped by my room. Although he could only gather a basic knowledge of my case in such a short time, he recommended that I see a particular neurologist at Barnes. This doctor is quite well-known for helping patients with complex neuromuscular issues. I was very thankful for this recommendation, as I have yet to find a neurologist to help with my care. We have since contacted his office, and are waiting to hear when the doctor will see me.
Dr. Wilson, my hematologist/oncologist, also stopped by my hospital room. He just wanted to let me know that he and my GI doctor are keeping a close eye on my lab results. My liver and blood counts still aren’t too happy. They continue to be concerning and suggestive of a potential HLH flare. So it is reassuring that I have such attentive doctors taking care of me!
And then I was headed home to my baby, Alice Eloise! She gave me such a sweet, gentle “welcome home”, and she somehow seemed to know I was in a lot of pain. Don’t you just love how perceptive dogs can be?
Over the years, I have found that inactivity is not very conducive to my well-being. And so, in the days following my surgery, I have tried to keep myself busy! Creating homemade chocolate cupcakes, graham crackers, and Poptarts were in the therapy line-up this week. My pain is still a bit more intensified, and I have been extra tired, but I feel that I am gradually regaining my strength. I thank everyone who was kind enough to remember me in their prayers!
Alice Eloise has some very exciting news to share: She is officially a “service dog in training”! This basically means that her vest FINALLY arrived in the mail! (Does she not look simply darling in her picture?!) But we also had our first meeting with her new trainer. Alice and I have been training very intently since the day she arrived, but recently she has been learning even more quickly, and she is growing into quite the well-behaved young lady! I am planning to take her on more outings now, as this will be an imperative aspect of her service dog training. I am so proud of my sweet little Doodle!
And, if you will permit just a tad more randomness from me, I would like to recount one final story. Have you by any chance seen the 1965 version of Rodgers and Hammerstein “Cinderella”? According to my mom, it used to be on television when she was a child. Anyway, when I was younger, I rented the movie, but after watching for only a few minutes, I deemed it too hokey to be worth my time. But somewhere along the line, I resolved that I would like to give it another chance, only to discover that DVDs of this classic are not so easy to come by. So imagine my surprise when I found it under the Christmas tree this past year! With much anticipation, Mom and I watched this long-lost masterpiece last night. Mom adored it, I adored it. Hokey, indeed! Clearly I have matured to appreciate the finer things in life! It was such fun, I simply had to share it with you all.
And with that happy thought, I leave you! Until next time… Tootles!
