Fibular Hemimelia --A Day in the Life of a Fixator

Well, we are settling into our new home away from home ... and into life caring for Ethan and his Fixator.  I thought a look at the routine might be helpful for someone facing surgery in the near future.

• Ethan usually sleeps until 8:00 a.m. or has to be woken up to get ready for physical therapy.  First things first:  he can use the walker and get from the bed to the bathroom to the table.  He still cannot, however, bend his knee --which means that he sits in one chair and we help him lift his leg onto another --not too comfy, but it works for him.
• At breakfast, he gets half of his vitamins for the day.  In order to grow new bone, he needs a multi-vitamin, 1000mg of Calcium, Vitamin D, and Vitamin C.  He can chew the Vitamin C in gummy form, but hates the "Viactin" chews for the calcium and Vitamin D.
• After breakfast, I check the fixator to make sure that the struts are on the correct numbers from the day before. We have a color coded schedule for each day.  If he moves in the night, a strut can move, so they need to be checked just in case.
• I usually turn two struts in the morning --only two can be turned at one time.
• Then we get him dressed.  This has become easier as he can now stand holding onto the walker and lift his foot enough to slide the shorts over his right foot and leg.  Then, his adaptable clothing just needs to be snapped up the other side.  We also give him pain medicine an hour before his therapy session begins.
• This week, Ethan has had table therapy three days at 10:00 a.m. and pool therapy at 11:00 a.m.  In order to get to the therapy room, we have to wheel him in his wheelchair and bring along the walker.  Wheelchairs are left in the hall and he walks from the chair to the therapy table.  We help him on the table and then wait outside.

A couple of side notes.  We love his physical therapists.  Not only do they know what they are doing --as they work each day with multiple children in fixators, but they are kind and compassionate.  They know us and him by name and always ask how he is, if we have questions, etc.  There are many advantages to staying at Mt. Sinai for therapy  --I have seen only one or two children in the therapy room without a fixator.  Therefore, you meet so many moms and kids who are going through the same process --and often they are ahead of you and can give great advice.  Also, if there is a problem, the therapist will simply call upstairs to talk to the doctor or his assistant --or send you upstairs to the doctor.

Ethan has had a major problem bending his knee.  We have sat through several appointments listening to him scream in pain --and in fear.  The therapist has reassured us and after a really difficult appointment, she called Dr. Standard who changed some of his exercises until he is "ready" to bend his knee mentally and physically.

• In order to get ready for the pool, we have to spray Ethan off in the shower --obviously, his leg has to get a good cleansing before he gets in because of possible bleeding or drainage from the pins.  This is easier than it sounds.  Because he can't bend his knee, he has to be lifted onto a shower table and sprayed off and then helped down.  The pool actually has an automatic chair that lifts the children in and out of the water.  However, we have to hold up his leg until the PT in the water gets him over the edge.  Again, when he gets out of the water, he has to use the walker to get to the shower, and then has to wash with a lot of antibacterial soap.  His pin sites have to be wiped clean with gauze and dried with a hair dryer (the pins cannot sit wet) before we leave --again in the wheelchair carrying the walker.

Okay, I don't know about you, but I'm tired just reading this!

• After both therapies, it's home for lunch and another "turning of the struts."  Since the surgery, Ethan has been very tired, and he usually sleeps some after lunch time.
• In the afternoon, we do some home physical therapy --exercises we were given by the therapists to do at home.  We are SO happy that Dr. Standard changed the exercises because Ethan was screaming before we even attempted to bend his knee.  He can, however, step up on a step or do a bit of a squat --to strengthen his knee.  Trying to bend it while either lying on his belly or his back was terrible to watch!
• He gets his second set of vitamins at supper time --and the final struts are turned.  On the days that he does not have pool therapy, he gets a bath at home, especially to clean the pin sites.  Again, this is pretty difficult.  I have to get into the shower with him -as he sits on a shower chair.  The key is having a detachable shower head so that you don't get soaked and can really spray down the fixator.  He is afraid to stand in the slippery shower floor, so Freddie usually get him out and carries him to the bed so that he can get dried off, get his pajamas on, and get his pin sites cleaned off.
• Usually by the time 8:30 rolls around, he is exhausted, usually weepy ... complaining of pain and, I think, just overwhelmed by the day.  He gets pain medicine before bed.
• On Thursday, we had a two week, post surgery check.  Bring your snacks!  We had a three hour wait and not much one on one time with Dr. Standard --which was unusual with him.  We also had our first strut change.  As you turn the struts, eventually, you run out of numbers which means that the strut has to be changed.  The strut change was actually quite scary.  Two residents came in, both with wrenches, and the whole process was reminiscent of getting your tires rotated!  Anyway, in order to remove a strut, a temporary one has to be inserted --into one of the "extra" holes in the fixator --to keep it stable.  Without the temporary strut, the fixator could collapse!  They take one strut out, put one in, and remove the temporary strut, and you're finished.

A kinda funny side note:  When we got home from the clinic appointment, getting the strut changed, we found two bolts rolling around on Ethan's foot.  After much panic, we couldn't find a missing bolt --so we're hoping this was part of the temporary strut they put on and forgot to remove!

In many ways, these days seem so long, and in another sense, given all the "maintenance," seem to be quite short.  God is supplying us with endurance and teaching us such a lesson about the short term pain often required for long term gain.