Bright and sunny - Fi and Doug take a nap!
The view from Fiona's PICU suite
Getting ready for the big move from the PICU!
WHEEEE-HAH! Escape!
OK, maybe not ESCAPE, but still a change of scenery!
View from the new digs. Kind of industrial but cool.
Let me first say that in addition to checking this blog for your wonderful comments, I also am able to check the other two email addresses, so I have received all your warm wishes. I hope to get back to each of you personally, when there is more time. Actually, what am I saying? I sort of have all the time in the world right now, but I'm just choosing to sleep and watch a lot of T.V.
I slept most of the day with Fiona. Sheesh, you would think that I got the Valium right along with her! She is very comfortable. When she does wake up, she answers all my questions, asks to go pee and was quite upset when I told her she would have to use the diaper. I think this is a good sign on many levels. Her bed is inclined at a about a 30' angle. No more is allowed. She also has to be rolled from side to side for position or bedding changes. No lifting of the legs! I have really not seen any signs of pain from her. Her complaints seemed to be centered around the confinement to the bed. We just need to get through tomorrow, and then we will really want her up and around on Monday.
After my last post, we moved up to the 12th floor, which is the neurosurgical recovery unit. We have a very experienced nurse, Anne, who was here with us until 7pm and will be back again at 7am. She informed me that she has been working with Dr. Park and his SDR patients since he has been doing the procedure. To explain just how long that has been, she said that she has been doing this since the recovery time was 21 days, and the children spent the first 10 days in bed! That is quite a change from today's process. I believe Dr. Park has been doing the SDR's here in St. Louis since 1987, and around 1993 is when he developed the new procedure that only removes one lamina to access the spinal cord. I can't believe there are still places around the country that continue to remove 3-5. Well, not really understanding the skill involved in performing this kind of surgery (which requires a microscope to properly isolate the nerves and rootlets), perhaps he is the only one who CAN work in that small area.
It was very interesting to talk to this nurse. She also asked how we had heard about the procedure. Everyone seems very curious to find that out, I guess because we are here from another area of the country. So I explain the somewhat dramatic turn of events, and coincidence and luck and in-the-right-place-at-the-right-time situation with being a part of Teresa's NDT course, and how Teresa suggested we do some research and how we came to make this choice. Doug explained the level of research we had done, including all the medical journals that were critical of the procedure.
I had Doug summarize the criticisms for me, so I could understand what weight they carried for me. Here they are for you to ponder too.
1) Dr. Park is extremely selective with the patients he accepts for this surgery, therefore in the minds of some statisticians, his success rate is skewed.
My response to this: And what is wrong with ensuring you pick only the patients who will have a good outcome? Doug went beyond this interpretation and actually spoke to a PhD statistician at Weyerhaeuser to find out what the significance of this was. (Doug can add the info from that conversation later...) We actually talked to the nurse about this. She added a very human story to all the statistics. She said there was a little girl Fiona's age who was very involved and very delayed. Her body was so rigid that her parents could not get her legs separated enough to properly diaper, clean and dress her. Dr. Park performed the procedure simply to relieve the child's pain, and assist the parents with care. That would not have been good for his statistics, because there was no walking expected, but he did it anyway.
Fiona just woke up. She wants water, and I offered her a cookie to lick. She took it very willingly! I just met the night nurse, and went over the plan. Fiona has spiked a little fever, which is to be expected with the Fentanyl (I was warned). It's only 101 right now, but the nurse is going to check with the doctor regardless. In talking to Fiona about how she feels, I asked "Are you feeling tired, or sick?" She replied "I feel tired". So that's great. She's been sweating like crazy - her usual self, so they are going to clean her up and roll her to another position. She is enjoying a show and some water as I type. Eyes wide open and content. Her auntie Fiona called from Australia and they had a little chat too.
For my medical friends:
heart rate around 150
respirations 20-25
O2 sat 95-100%
It's 9:00pm now and they just changed and rolled her to her other side. That seemed a little rough for her, but she is happily watching a show again. Valium is on it's way. The Valium is to help with the muscle spasms that may occur as a result of the alteration of the nerve pathways.
She has been nodding yes and no when nurses ask questions. The only time she has spoken is to chat with her Auntie Fiona, or to very pointedly ask me "When can I go home?". Of course I have explained the schedule to her as simply as I could, but I don't think she has a sense of time right now. So I have resorted to saying "pretty soon".
The plan is to cut her Fentanyl in 1/2 at 6:00am. It will be replaced with Tylenol either with Codeine or without. Codeine would be stronger, but the drawbacks of Codeine is that it causes constipation, and that would be the last thing she needs. I'm a little worried about the reduction in the narcotic form of pain management, but I know it is better for her to get her off of it as soon as possible.
So back to the criticisms of the procedure for a moment.
2) Some physicians say that simply increasing the amount of physical therapy to the levels that we are required for rehabilitation after SDR will achieve the same result.
This one made me laugh. All our therapist friends who know Fiona will know immediately that this would be an impossible plan for Fiona. Doug found the study that showed this result. And it is true, but only up to 5 years. So they studied children with SDR and high amounts of therapy time, and followed children who had the same therapy time, but no SDR. Results were similar until the point where therapy was reduced. In children who had had the SDR, improvements were maintained or continued even after therapy amounts were reduced; whereas, in order to maintain the gains, the non-SDR children had to continue with the same level of therapy.
So. Firstly, Fiona was having a very hard time participating effectively in her physical therapy sessions. I believe that most of the reason for this was the discomfort she was feeling from the tone and subsequent tightening of various muscle groups. She is not really at an age or cognitive level to be able to understand what is good for her, so it would be impossible to simply say "let's increase therapy". Secondly, I do not want a lifetime of physical therapy to be in her future. It will be an integral part of her life, for the rest of her life, but it should not be her whole life.
3) The last major criticism is that earlier claims from those performing SDRs were that there would be no orthopedic surgeries required as a result of having reduced or eliminated the spasticity.
If you catch children early enough, that can be a benefit; however, Dr. Park certainly doesn't claim this. In fact, he warned us that due to how much her feet have been turning in, and how long that this has been developing, that she may still need orthopedic surgery to correct the in-toeing. Orthopedic surgery means either some kind of tendon lengthening or re-positioning or bone alterations. I actually tried to get a consult with the orthopedic surgeon here, while we were here, thinking that I was being prudent. We were still at home when I got that idea, and it took a while for the spasticity management clinic to call me back, and during that time I realized that I was really jumping the gun. The head physical therapist confirmed this when she called me back. They like children to wait at least a year, to see how the SDR changes things. She said that what her legs look like before SDR and what an orthopedic surgeon would recommend would be completely different from a year from now. It becomes very revealing how much of the in-toeing is related to tone and how much is contractures or bone torsion. I am content to wait and see. Definitely not in any rush for more surgery.
In speaking with another parent whose child underwent SDR just over a year ago, I learned that what Dr. Park says will happen, happens and exactly when he says it will. Also, that we should follow his instructions to the letter. I really processed that when we had our first consultation with him. He said we will have to work hard to stretch her heel cords. We have always worked hard at this, but it has often been an uphill battle against the spasticity and her spicy attitude. But in his simple way, he demonstrated that good-old gastroc stretch that all us runners (or former runners in my case) know too well. Stand on the curb of the road on your tip-toes and bring your heels up and down in the air and feel the stretch. Goodness knows how I'll get Fiona to do that, but therapists are creative and we will figure out a way.
Well, it's just after 10pm, and I'm officially hungry now. Cafeteria is open until 2am. This is good and bad... Fiona has had her Valium and is in a happy place. A minute ago, it was kind of cute, a bell went off to indicate that the syringe was empty, and she let out a big voice and yelled "WHAT!?" and then went back to sleep.
My plans are to watch the movie Quantum of Solace. Fiona in Australia has been bugging me to watch this for quite some time. Apparently there is a scene from the Palio in the movie. The Palio is a 500 year old medieval horse race that takes place twice a year in Siena, Italy (in the region of Tuscany).
I know this is Fiona's blog, but I can't resist telling you a little bit about this race. It is the most fantastic sporting spectacle. I have been to it twice now (Doug and I on honeymoon in 1999, and Big Fiona and I in 2006). You spend hours getting into the city, placing yourself strategically in the main piazza for a good (free) view of the race. Then you are locked into that piazza for a number of hours. I think I remember it's something like from noon until 7pm. No bathroom breaks, no food and water sales. Standing room only, body to body with strangers. There is a lot of pomp and circumstance, and then the race lasts about 2 minutes. Twice around the piazza I believe. It is bareback, it is incredibly dangerous for both horses and riders (PETA despises this race, in fact several of my cousins boycott it because of this, uncharacteristically for me, I can't stay away - sorry hippo therapy friends). The horses represent the many neighborhoods of Siena, which has also not changed in 500 years. It is EVERYTHING to win this race. The participants spend the entire year planning for it. It is the horse that wins, not the rider, so the rider can fall off and be trampled, but the race goes on and the horse can still win. It's the rider's fault (and lifelong shame) if the horse loses. The winning horse gets to sit at a table with the mayor and enjoy a feast after the race. Maybe that's why I like the race. You are getting my drift now...
As a foreigner, you make sure not to cheer for any one contrada (neighborhood), just to keep yourself safe. Emotions run high. After the race, you run at full tilt to get OUT of the city before the riots start. You have no idea whether you will end up in the winning crowd, or the very upset losing crowd. I have witnessed grown men sobbing over the loss. Oh and by the way, the absolute worst result is to come in second place, because that means you almost had it but you couldn't pull through. A lot of life lessons in this race, I tell you.
O.K. so apparently James Bond has a chase scene during or after the Palio that pales in comparison to the 2km (1.6 miles) sprint that Big Fiona and I did trying to make our way through the unruly crowd to our departing train on the outskirts of the city. This, I am curious to see.
So think of me and Doug and Fiona the next time you watch that scene. I must say she comes by her strength honestly.
Good night everyone.
p.s. A big hello to Eva, Jenna, and Emily. I told Fiona that her friends have been reading about her, and her eyes got VERY big. I think that makes her happy.
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