“that is the worst foot i have ever seen”, said the grumpy old doctor…supposed “expert”, in to the eyes of a 13 year old boy and his mom who were seeking hope. he continued…”i suggest you consider amputating”. i was like… “come again”…did this $#^%&* really just say what i think he said? he’s supposed to be an expert. we waited months for this appointment. we were supposed to leave this appointment with a game plan full of hope, not total shock and despair that after all this little foot had been through that we had landed on the word amputation. mamma bear reigned it in as he gave us his “reasons” to back this absurd recommendation. mind you he threw us a little scrap with the mention of a radical procedure to which he showed us bloody post-surgical pictures of what this would look like (sweet of him, hugh?) but then tells us he hasn’t done it in over 15 years because it is so rare. thanks for the hope, doc. next thing i know the lovely.young.smiling lady from the prosthesis department comes prancing in with a collection of below the knee prosthetic options. i seriously thought i was going to hurl. let me mention that i believe amputation is an option in certain cases. clearly it can be a miraculous choice in the right circumstances. but, no.thank.you…check please. the docs parting words were, “you can always get a 2nd opinion”…….ya think!!!… and maybe a 3rd.4th.5th.opinion.
we jumped in the mom-mobile (aka minivan) and started our 2 hour journey home. i wanted to call hubby. i wanted to talk to a friend. i wanted to scream. i wanted to cry. lots of internal self talk… “hold yourself together mama. keep your eyes on the road. stay positive. don’t curse about the doctor (in front of little dude). the looooongest 2 hour car ride ever was full of conversations with my brave boy. what if we just “cut it off” he says, voice quivering. “then it won’t hurt anymore”. “then i can learn to use my new foot and do things i never could do before”. “right mom?”. “we have lots to think about buddy… but we’ll go see a lot of other doctors”.
the search for those doctors was a journey i never could have imagined.
let me back up. how did we get here? you see…he was born with a club foot. not a big deal…usually.
(let me squeeze in here the torticollis, concern of genetic abnormality… (you know the wait time to see a geneticist is like 6 months), hernia, all sorts of swallowing and latching issues making feeding a huge challenge, growth on his tongue…etc… a cute little package…thankfully nothing life threatening…swaddled up like a burrito). back to the club foot.. the typical protocol… surgery #1 at 2 weeks of age. weekly stretching and casting of the foot. pt. not making progress. surgery #2 at 6 months.
more casts. more pt. not making much progress. doctor scratching his head “this is a really stubborn club foot”. learned how to officially crawl and walk with cast on leg. go.buddy.go…clonk.drag.clonk.drag…see the scratches on the hardwood floors. surgery #3 at 18 months. more casts. more pt. braces on feet…you know…one of those metal bars that goes between shoes that they are even supposed to sleep in…um…are any of us sleeping? i. think. not. holding pattern for 2 years. 8 hour drive to specialist. experimental procedure of a tendon transfer seems best/only option. surgery #4 at 4 years old. more casts, more pt. didn’t stop him from learning how to ride his bike!
by age 5 he’s now on his skateboard due to what appeared to be success with the tendon transfer.
cruise along a few years. special brace for foot. mean kids at school. can’t stand on right leg unassisted. can’t hop on right leg. can’t skip. can’t kick a ball with right foot. but…the boy can ride a bike like a champ! did i mention his feet are 4 sizes different and the “little foot” (as we like to call it) is oddly shaped and thick. ask me how much i like shoe shopping? i have nearly cried on the floor in the nordstrom shoe department. seriously. love when they measure his feet and say (very puzzled), “his feet are 4 sizes different”… “thanks einstien for bringing that to my attention”… i just smile and nod and politely say, “yes”. does anyone have a toddler that is patient trying on shoes? how about when it literally takes 15-20 pairs and you still walk away empty handed. oh…did i fail to mention that once the left foot was in men’s sized shoes and the right foot was still in kids size shoes (and probably always would be) just how much more fun shoe shopping is? let’s also mention that one has to buy 2 pairs of shoes in 2 different sizes to make 1 pair of shoes for this little dude.
by age 11 the pain was getting increasingly worse. the deformity had morphed in to something that there was not even a name for. remove club foot label. insert ??? and blank stares. the pain was impacting his day to day life. shooting pains every time he walked. time to put on our thinking cap again.
Let’s take a quick.side.trip to sleep-a-way camp. Little dude left with a scrape from a garbage can attack…ON.HIS.RIGHT.FOOT.OF.COURSE. let me give you 3 ingredients and you can guess the outcome. Scrape. Band-aid that did not get changed for a week. LAKE WATER. He walked in the door from camp. We took 1 look at his foot. GASP. It was the size of a football. Swollen. Oozing. Made dash to pediatrician. Pediatrician gasps and calls ahead to ER. Folks…that is NEVER.A.GOOD.THING. enter ER. On IV antibiotics in the matter of minutes. STAPH. INFECTION. Had already traveled UP.TO.HIS.KNEE. 4 day/3 night luxurious accommodations (hard couch) with 5 star dining (hospital food) while little dude sat and received drip.drip.drip. of hard core staph killer. back to the doctor journey… since the grumpy amputation doc….and let’s fast forward to age 13
our next stop was another highly recommended doctor in our state. scratching his head. hadn’t seen anything quite like it. “let’s start with a custom orthotic”. ??? “but no one has ever said it would help him”. he says “how can it not help him, his arch is so high… which causes so much pressure every time he steps?” 10-4 doc. downstairs we go to start that process. in the meantime. no real surgical light bulb moments from this fella but he didn’t tell us to cut it off and in fact he thought that was a ridiculous idea…at…this…point…and talked us through a basic surgery that would change aesthetics but not necessarily the functionality…didn’t seem like he thought it would be worth the risk. keep marching onward. friend, who has experienced having to choose amputation for her child gets recommendation from that surgeon for a guy that sounds promising. orlando here we come. and while we are here let’s go goof off at universal studios shall we? each new doctor we see we enter with a sense of hope. a yearning for an option that will give him less pain and more function. loved these 2 docs. each studied his foot with great care and gave us their opinion and recommendation which were opposite of each other because of their specialty. oh how i wanted 2 doctors to both say that they agreed on one single plan to be the best plan. so we left with 2 doctors we really loved & connected with but with 2 different solutions. no guarantee of outcome. one of the docs took multiple pictures of this unique foot and asked if he could share it at the lower limb symposium coming up in a few months. not exactly the moment of fame one dreams of but we said sure because surely with all these experts attending, someone will see it and say they can totally fix it. wishful thinking.
back to get orthotic. wow…it helps…a bit of welcomed relief.
next we send records to 4 doctors in boston. scratch heads. nope. “we haven’t seen anything like this”. cross them off.
we then head back to our local guy to let him know our findings. he says, honestly, “there are only 2 doctors in the u.s that i think should touch his foot if you really want to do surgery. doctor a and doctor b. one in florida and one in maryland. btw…the one in florida would require us to move there for about 8-12 weeks. laugh with me moms. research mode. findings make it clear that maryland is our guy. resume and accolades easily 30 pages long. surely he will have fixed a foot like this 100x. send off records. wait. wait. wait. sigh. he says “this is really complex and i would not be comfortable touching this foot. i don’t think it would be worth your time to come up here…but…” (you know the word “but” is either going to have something really bad come after it or something good)… there is this doctor in seattle. seattle? did he just say seattle? you.have.got.to.be.kidding. 3000 miles from home. he continues, “people come from all over the world to see this guy”. ok. you’ve peaked my interest. “he’s the top pediatric foot deformity doctor in the world”. did he just say “in the world”. yes, he did. research mode. hmmmm…who do i know in seattle? yes… my friend lives there. i will call and ask her if she has had any experience at this hospital or know anyone that has that might even know him. her quick response is that one of her best friends works at the hospital. cool. this friend says, “i have heard incredible things about this doctor but i don’t know him personally…let me see what i can find out”. the next.day. said friend of friend is in line for coffee at the hospital. who do you think was in line in front of her? you are smart. i know you can figure this out. bingo. it’s him. it’s the doctor. she explains about this boy “down south”. he immediately says, “have mom send me all his records, films, notes and i will take a look”. i get the call and i have goose bumps. and being the overly organized person that i am. i had everything ready to go. pronto. within 24 hours of these records making their away across the cyber world out to seattle, we heard these words. “i. think. i. can. help. i have worked with cases like this before. please tell them to come on out for a consult”. insert angels singing. delta.com…2 tickets to seattle please…pronto!
a month later we were flying across the u.s…holding out for hope. (ok let’s throw in 2 extra days. hit the famous seattle market (yum), go to the zoo, shop. eat). We of course have to grab him a knit cap so he fits in with the seattle fashion scene.. i’d say he is rocking that look!
the day of the appointment there was both excitement and anxiety. “what was he going to say. will we leave hopeful or hopeless? will this have been a waste? was the grumpy doctor right?”.
deep breath. in he walks. his smile and bedside manner put me at ease. he holds his foot. studying it. turning it. measuring it. stretching it. going over every detail of the past 13 years of surgeries and treatments. son explains each battle scar. funny. he knows every one of the doctors that has ever touched this precious foot.
he says, “why would you amputate? he has all the parts. they are all healthy. they are just in the wrong places. they’ve morphed in to something they should not be. but i don’t think we are at the point of amputation. why wouldn’t we try to work with what we’ve got first?” he goes on to say, “this is definitely in the category of the worst foot deformities i have ever seen but (there is that “but” again) i can fix this”.
the most amazing 4 words a mama’s soul could hear. i.can.fix.this. “but” (oh, no… that word again)… “i can’t guarantee anything. i think he will not have the pain he has now. he may just have discomfort. he will likely lose some mobility in this area but will gain it here and he can learn to work with it. he may gain a shoe size. the recovery will be 9 months. a lot of pt. it’s a painful surgery. he’d be in the hospital 3 days and i would need you to make 2 post-op trips”. the details keep coming but i am only focusing on those 4 sweet words. i.can.fix.this. sign me up… i mean him… sign my boy up…let’s do this.
have you ever coordinated a surgery 3000 miles from home? let’s start with the fact that we homeschool (aka hybrid school)..there are 2 other kids that will be left behind that have school schedules that have me running around town. we have no family around. hubby travels like crazy (this is not a 1 parent trip). and…and…and…the details were overwhelming…anxiety from an undertaking like this creeps in…the logistics… it’ll take a miracle to pull off. but… (my chest is tightening at that word)…. but God……. exhale… there is no doubt that He is the one that led us to this doctor and by golly… He will raise up the army back home to care for the teen and tween left behind and He will work out the travel arrangements and He will take the control away from this mama control freak and He will handle it. and.He.did. in His way…definitely not my way. it took about 15 people providing rides, staying in our home, delivering meals, etc. spreadsheets. online volunteer sign ups. a level of coordinating that was above any event or room mom stuff i had ever planned. ready.set.grow. let go and let God.
did you ever try to anticipate what you needed to pack for a trip like this. i mean…beyond basic clothing, my essential oil arsenal and supplements that i don’t leave home without. not like we were going to the middle of nowhere. it was seattle for goodness sake and anything we left behind we could buy there. but still this was a challenge for me packing for the “unknown” and not a vacation. hubby, traveling guru, of course packed in 15 minutes the night before we left. grrrrr.
april 25th arrives and mom, dad and little dude are flying across the u.s. full of hope. full of some concern of the unknown. full of anticipation. covered in prayers. a few days of sightseeing. a few days of running around on that precious foot that would not be making contact with a floor for months after surgery day.
mommy mind doing mommy things. the talk in one’s own head is dangerous. what if during surgery they get in there and realize they really do need to amputate? the voice of reason takes over and says “if this doctor (who God clearly led us to) of this caliber says that he ultimately feels that we need to amputate then i can live with that and i would trust his opinion (over the @#@#% doctor). he would adapt. it would be ok”.
we spent my birthday morning out and about in Seattle, getting some cheesecake on a stick and sightseeing.
then we headed to the hospital for pre-op… dotting our “i’s” and crossing our “t’s” .
the next morning comes too soon. it’s show time. nerves are calm. bob bear is prepped for his 5th surgery (yes. trusty. precious. bear friend. is always by his side). he’s staying strong. bright blue eyes. crooked little smile. endless chatter (boy does he talk a lot when he gets nervous). with one last hug and kiss. let’s do this. off he goes. let the wait begin. tick.tock.tick.tock.
3 hours later (honestly i thought it would take longer). doctor meets us in conference room. little dude is just getting to recovery. he explains in great detail all that he did. seriously…like 8 different surgical procedures done in one operation. cut this. move that. relocate this again. rotate this. shift that. put this under that instead of over this. pin his toes (not in the original plan). anchor this. so we say “hey doc… how bad was it?” and he says,”honestly…it was in the worst of the worst category but i feel we made great improvements. 1 of the things i planned to do i could not do and another thing i planned to do i could only partially do…both because the scar tissue was just too thick”. this guy is a.mazing. he’s like “God gave him a healthy foot. he just gave me the skills to put everything where it needed to be”. his bedside manner, demeanor, glass overflowing outlook, etc. put us at such ease. we are given a bunch of instructions and off he goes… flying to our home state for a orthopedic convention of all places!. the nurse comes in and asks who will be going to meet little dude in recovery. “i am” i exclaim as i jump out of my seat. no way hubby was winning this golden ticket.
eyes half open. crunching on crushed ice. bob bear fully alert already eating honey. groggy voice. half smile as his fingers gently squeezed my hand. let the recovery begin.
insert horrific part of the journey here. now…mind you…when i say “horrific”… i am not discounting that we were not dealing with anything life threatening… he isn’t the kid down the hall that was in the hospital fighting to breathe… we didn’t lose our child….however it was horrific for us…it was for him… and we were not prepared.
no one at the hospital was.
if you’ve ever played the game, jenga, it was sort of like that with the pyramid of pillows we were constantly adjusting to keep his foot in the right position. there was no such thing as a comfortable position… just one that he could tolerate for 5 minutes.
lets.talk.about.pain….pain… we had a pain management team assigned to us. one would assume they were debriefed on the fact that this child just had his foot cut open in multiple places and rearranged. one assumes they already know that foot surgery is one of the most painful orthopedic surgeries that exist. do you have any idea how many bones are in a human foot?
the human foot has 26 bones, 33 joints, 107 ligaments, 19 muscles and tendons. the bones in your feet make up about 25 percent of all the bones in your body
you get my point. the pain is real. the pain was horrific. no one…not the doctors.nurses.anesthesiologists.pain management team, etc. were prepared for what was to come. 24 hours post-op all.hell.broke.loose. the pain hit out of nowhere. blood.curling.screams.is.an.understatement. there was all of a sudden a flood of doctors swarming little dude. pain management scurrying. why wasn’t the nerve block working? inject this. swallow that. adjust this and that. blood curling screams continue. no joke. i am at hotel. hubby (mr. always calm) who is exhausted from the 5 star sleeping accommodations…
calls in a panic. “get over here now”. little dude about to literally pass out from pain level. oxygen being administered. finally calm. got it under control for now. he’s on regular dosage of pain meds that ‘normally’ would do the trick but this was not a ‘normal’ surgery. we’re talking a surgery that takes places on maybe 1-2 patients per year in the entire US. meeting with pain management team. puzzled. the next 24 hours continued with constant pain spikes that no one seemed to be able to figure out. we are now 48 hours post op. hubby is back at hotel to sleep. hell breaks loose again. the pain is so excruciating that little dude’s eyes could not even shed a tear, as they started to roll back in his head. mom.is.freaking.out. dad comes back. anesthesiologist is out in hallway and hears the screams and comes charging in calling her posse to follow. she orders in an ultrasound machine. the nerve block is not close enough to the nerve it is supposed to be numbing. issue with iv. nurses need to tap other arm.while.child.is.screaming. o.r. is prepped again and the anesthesiologist personally grabs his bed and whisks him away to be prepped for 2nd surgery. the 20 minute promised prep time took 1.5 hours as they attempted to contact our doctor who was now out of state and needed to get the doctor on call in to the o.r. to discuss the situation. little dude is screaming as it was late and there were not many people in the o.r. anytime he saw a person walk by he would yell “does anyone care…does anyone care how much pain i am in…somebody please help me”. it was nearly impossible to spread out the dosages of pain meds and not doing so becomes dangerous as they can reach toxic levels, especially in a little dude who is barely 80# sopping wet. mr. dr. grumpy. pants #2 arrives with his ego in toe (hard to be filling in for this world renowned doc) starts pushing and probing and moving his foot around. little dude is yelling at the doctor to stop touching him. doctor and his ego are bruised as we (anesthesiologist included) tell said dr. that we do not like his idea and don’t want him to remove the cast. walks off with unkind words and awful attitude. we move forward with just moving the nerve block. 2 hours later our angel anesthesiologist wheels our boy back up to his room and shows us the new ultrasound pictures and that the meds are now dripping as close to the nerve as possible. whew. crisis over. ???
morning dawns. breakthrough pain keeps coming. more of a level 5-6 instead of off the chart. did i mention we were only supposed to be in the hospital for 3 days. um. we aren’t being discharged today. i am over this pain management team. said little lady walks up to this mama and says, “do you really think he is in that much pain or do you think he is just over-reacting”. seriously. she asked me that. i politely asked her if she ever had her foot taken apart and how many surgeries like this she has dealt with. that was the last chat i was going to have with her. enter new pain management doc. she tries this and that. little dude is lethargic he is so heavily drugged. he can not eat or drink on his own. he can’t hold his head up. he has no fine motor skills. he can’t speak a sentence. he is a limp noodle. day 5. light bulb moment. she says “how about we put him on iv pain meds.steady.drip”. that sounds swell. let’s try that. why weren’t we already doing that? why were they just seemingly throwing darts with a blind fold on every time the pain spiked? so she does and it works like a charm. sweet sleep
only problem is he can’t be released from the hospital until he is off iv meds and on oral meds for 24 hours. tick. tock. tick. tock. day 6 on oral meds. day 6.5 … not working…back on iv meds. tick. tock. tick. tock. day 7 back on oral meds. i want to go home. we ALL want to go home. day 7.5…not working… back on iv meds. we’ve got to get him home. own bed. licks from puppy. real nutritious organic food. home sweet home. dial up delta. “can you get us out of here tomorrow”? they make it happen. we are springing this joint….we are getting him home…but he’s still on iv. and oh, let’s throw in some PT cause he can’t even walk on crutches yet. crazy how much we take walking for granted.
another little bomb gets dropped. “with the level of narcotics we’ve had him on for 7.5 days i would suggest you line up a pain psychologist for him as he is likely forming a “dependency” (let’s sugar coat the word addiction) says the little lady. what? pain/addiction psychologist? i get some names/numbers but i will.not.need.them. i am determined. send s.o.s. to prayer team. they’ve been on their knees for our boy faithfully and we know prayer can move mountains.
day 8 dawns. still on iv meds. unhook. discharge. pray. juggle airport. oh.my.word. immobile child. touch the cast even with a feather sends him over the edge. getting him through security was “fun”. can you shut your eyes and imagine what it was like to get him on the airplane? but…kudo’s to the delta folks for being so amazing and all the people on board that had to change seats so we could accommodate him and his massive stack of pillows. pain pills down the hatch. knock him out cold…up.up.and.away. we are going HOME.
btw…how happy does he look to be out of the hospital?????????
hugs from siblings. house in one piece. get well cards. licks from puppy. own bed. friends visiting. real food. a stack of pain meds stares at me. “ok”, i say, “we’ll use them for one night while i get my game on”…so we did… then it was an all-out essential oil and supplement assault. anything and everything that could support the bodies healing process, help lessen inflammation, assist him and his foggy brain (he suffered quite a bit of memory loss), detoxify the body which i know is a pool of narcotics, and lift his mood. rub this on here. diffuse that. drink this. swallow that. pray. pray. pray. i am not going to have to call in the addiction/pain psych person. nope. and we didn’t. and i didn’t give him any of the stuff they sent home with us after the first night. we were done with the chemicals. back to what i know…what i love… all the things God gave us.
4 days later. no more natural assistance needed for the post-operative pain. mind unfogging as body is detoxifying. spirits high. regaining fine motor skills. eating like a champ. crutching around.
continue the natural regimen. start hyperbaric chamber. oxygen getting to those cells is GOOD.
6-8-15 post op #1. dad and little dude go (mom is in italy…more on that another time) take off cast. remove pins (with therapy dog sitting on his lap of course and face covered so he doesn’t have to see the yuck). new cast. minor weight bearing.
6-22-15. mom and little dude go. cast off. the unveiling of the new and improved (and stinky, gunky, scabby) little foot. MIRACLE REVEALED. hold back the tears mama.
thank YOU doc. thank YOU God.
6-24-15 pt starts. 39 sessions to go. sheer determination to be back on the tennis courts. push through the pain. work hard. after about 15 sessions little dude says “mom, can i ride my bike to pt”… yes. so he did. 8 weeks later. “mom, can i start helping with the junior tennis again”… yes. so he did. 2 weeks later camping, “mom, can we go on a short hike while the others go on a long one”, yes. so we did and i can’t even describe the emotions of seeing that little dude climb up this steep mountain to get to the water fall. jaw dropped. he was hiking with the foot the grumpy doc said we should amputate.
2 months later, “mom can i go to my tennis lesson”… yes. so he did. and then there was the mission trip to guatemala where he ran and played soccer with the kids at the children’s home… and.so.on.
it is now 1 year post op. he.runs. he.plays tennis. he.rides a bike like nobody’s business. he.stands on his right foot unassisted. he.skips. he.can kick a ball… he. is unstoppable…yet he knows his limits…he communicates his limits…
he is a walking miracle.
he.has overcome. he.will continue to overcome.
why? why was he born with this clubfoot turned no-name deformity? why so many challenges put in his path? why this journey….this long journey…so many doctors…why seattle? did he shine the light of Jesus on a specific day and time ordained by God to touch another life there? why did he have to experience such trauma? such excruciating, incomprehensible pain? why did we have to experience seeing our child in such a state…sitting there helpless to stop our son’s pain. why? only.God.knows. was that the last surgery? i.don’t.know. will he ever need to amputate? possibly. doc didn’t promise that would never be a viable option but the prognosis is fantastic with what was done.
so let’s just enjoy where we are at, shall we, and give glory to the One who created this precious foot.
we know there is purpose in everything that God allows. Answers don’t always come quickly or in the form we want them to. perseverance creates strength and increases faith. HE does not make mistakes. his foot was a work of art from the beginning, knit together in my womb, and has been refined by God’s great artists over time. the challenges and experiences have shaped this little dude’s heart and mind. he does not take for granted all he can do and knows there are many that can’t. little dude is now a young man…on the brink of age 15. where will these experiences take him in life? who will he help? what message does God want him to share with the world? what will his ministry be?
4.28.2016. we’ll just wait and see. >>>>>>>> to.be.continued…
What kind of crazy journey has God brought you on?