I had a care conference meeting with one of Kayli's 3 orthopedics today because within the last 8 weeks, Kayli's left hip has come completely out of her socket (is displaced). Her right hip was already out (likely since birth) so now both are out. We, as her parents, have to decide what care we want to proceed with for Kayli. It is a VERY tough decision to make because there are complications that could ultimately cause her demise if we choose the optimal choice of aggressively invasive surgery.
Normally, when hips are displaced, there is minimal to no pain unless the ball of the hip is pressing against the hip socket. This puts pressure on the nerves, and literally crushes bone against bone. We have been told Kayli's hips are much worse than the worse case scenario for a severely affected CP pediatric patient. Most times, they can wait until the child is 4-6 years old for the most aggressive hip treatment. Kayli has surpassed the need for the most aggressive treatment, and she is only 2 1/2 years old. Kayli's ball and sockets are not touching directly yet, but Kayli is presenting with a lot of pain. Her left leg is turning in, and it is increasingly harder to open her hips/legs to change her diaper. She sometimes wakes up from her sleep crying from discomfort, and is not able to sit ring style with her abnormally placed hips. She is sometimes able to stand in her stander, on her tummy, etc with ease, but it is becoming more of an occasional comfort than regularity of comfort. Kayli has 2 Occupational Therapists and 2 Physical Therapists working with her every week (4 sessions a week) to maintain as well as increase range of motion. In the last couple of months, there is a rapid increase of severity of her hip dysplasia.
Goals for helping Kayli: Decrease/eliminate pain, gain functionality and range of motion, stay one step ahead of her realm of abilities by allowing the opportunities to sit and stand on own comfortably, and protect her from harm and/or irreversible damage in longevity.
The 3 options given to us include:
1. Do nothing new, continue with therapies and "let nature takes it course". This is a non invasive approach, where Kayli's hip dysplasia will continue to progress but pain should not increase in abundance until her hip bones collide. Then an aggressive surgery will be eminent if she survives in longevity but suffers in the days between now and then. Her abilities will be stalled and limited due to the pain, and lack of range of motion because of her muscle tone and hip dysplasia. Kayli's life is not threatened, but her quality of life will continue to decrease as the pain intensifies.
2. A surgical procedure called Hip Abduction. This surgery is minimally invasive with a few days (3) of hospital stay and no casting. The surgery is meant to release her muscles and give Kayli more range of motion. It is uncertain if this will increase, decrease, or have any affect on her current pain level. The hope would be that the affect of this surgery may last a couple of years, IF Kayli is involved in vigorous daily therapies, and sits with a cushion between her legs at all times. It is thought to be a painful daily life, as the muscles continue to be "conditioned" against their natural tone on a daily basis. There is a risk that her muscle tone will go in the opposite direction, and she will lose all muscle tone. It is essentially a "band aid approach" with minimal if any relief from pain. The only pro is that there could be more range of motion than she currently has, if the post surgical care is aggressively maintained. If Kayli falls ill, her muscles will not receive the care they need and her range of motion will fault back to pre surgery conditions or have little to no muscle tone at all.
3. An aggressive surgical approach, including an accumulation of 8 surgeries (4 on each hip) accomplished bilaterally in a total of 2 days. The first surgery will be on one hip, and if all goes well it will take 4-6 hours, with a goal of 4 weeks in a Spica cast (under rib cage to toes). Then 3-6 months later, the second surgery will duplicate the original hip surgery and Kayli will minimally spend another 4 weeks in another Spica cast. The hospital stay is lengthy (a week?) for each surgery. The surgeries include: A) Femoral Osteotomy~to shorten the femur and redirect it into the hip cup/socket. B) Acetabuloplasty~ to deepen the hip cup/socket. C) Capsulorrhaphy~ to tighten the hip capsule. D) Hip Abductor~ to release muscles.
This 3rd approach has been related to us to be the "optimal treatment" for Kayli, but the risks of the "optimal treatment" may outweigh the goals. Concerns for Kayli with the most aggressive approach include major blood loss (a common risk for this surgery). Kayli also has a history of needing blood transfusions after surgeries as her norm, so this is a critical consideration seeing the "normal" risks include an already profound amount of blood loss. There is a surgical consideration that the meds she is on can also cause an increased risk of blood loss or replacement. Once the surgery/treatment has been started, the other steps to the surgery HAS to be finished. In other words, they cannot start the first surgery (A) and end there. They would have to continue with surgeries B,C, and D to get the corrective outcome. If Kayli has a significant blood loss, they would still be forced to continue the surgeries and/or go back in several other times, putting her at higher risks for infection, blood loss, etc.
I was given two impressions today, one of medical opinion, and another of personal opinion. The medical opinion was to give Kayli the 3rd option, and without extenuating circumstances, the reccurance rate is the highest risk (having to repeat the surgery later in life). If Kayli's specialists feel the risk factors are within appropriate surgical release range, this would be the optimal treatment plan. The personal opinion was for my husband and I to think about Kayli's longevity and decide if the treatment to reach all of our goals for Kayli's outcome, outweighs the risk of complications that could realistically lead to Kayli's death.
We will be thinking long and hard about what is best for Kayli. We have always taken in all medical information, then pulled out the impertinent information relating to Kayli, and then tweaked the discussion to fit Kayli's goals and needs in order to come up with the best plan of care for our daughter. We are reluctant to rush into giving her the needed optimal surgery at the cost of loosing Kayli's life to the realistic risks of a major, non lifesaving, surgery.
I have a call in to the neurologist, suggesting he evaluate the request I have to give Kayli a CP treatment plan to help her with muscle spasms caused by her high/tight muscle tone. Her muscle tone is likely to be causing the alarmingly increasing unaligned bone growth in both her hips, as well as, her spine.
We hope to make the best choice for Kayli's growth and approaching abilities, while protecting her life. We are afraid we will regret our decision if she passes away at the surgeons hands with our choice to give her an aggressively invasive treatment vs. providing her with a low quality of life (in pain).
Prayers for Guidance is always welcomed and appreciated. <3 Thank you! <3