So another busy day at the office began with a visit from Keith. Working closely with the SDR cp team at SLCH, Keith Smith is a globally respected orthotist based here in St Louis. Like so many of the children who have come here for SDR Caitlin had some speedy casts made of her feet to make orthotics from. Keith has a wonderful bedside manner despite catching Caitlin and daddy still asleep.
Later it was breaky (seen twice – sick is part of recovery for most kids) followed by tough physio. A quick trip to the roof garden was rewarded by a chance to feed the pond fish and dip her toes in. Afternoon session saw kt earn a ride on a tricycle around the floor corridors. She ended the session on high cycling herself for most of the way. As ever, she’s stubborn as anything but delights at the “good jarb” phrase coming from Jolyn the lovely physical therapist.
It can’t be that too many childrens’ hospitals are better equipped than St Louis Children’s. So far we have discovered 3 gym rehab rooms, a teen room, a sibling room (a kian favourite), play rooms, learn rooms, fishtanks WITH fish on almost all floors, a hanging non stop trainset, interactivity for children of all ages (yes Dads, it’on like D. Kong) on all floors, and space to breath. Today Caitlin found the 8th floor roof garden the highlight of her first journey out of bed.
The 3rd day post op is eventful enough: 6am meds, epidural pain relief taken out of back, more oral meds, disconnect of IV in wrist, Dr Park visit, bedside physio visit, pt room physio.
Tears, demands, pleading, bargaining, time wasting, fear, skyping, and finally M&Ms and smiles as the sun hits her face… pretty flowers and fountains get to work on her mood! She is sleeping now. No cables. Content.
Every 4 hours the nurses turn Caitlin. She doesn’t like this at all. In fact it got to the stage where just the mention of being turned had her crying.
Today is also the day when the mattress can be elevated by 30 degrees. Actually the mattress can be elevated up to 85 degrees but most patients can only handle 30. Caitlin only wants 20 degrees elevation but later on can tolerate it a bit higher. This position enables her to eat more comfortably and do essential activities like play Despicable Me!
The catheter leaks (explaining the near empty bag) so rather than re-catheterise,it’s removed. One less tube – bonus!
A difficult night (by comparison with day 1) due to not liking being turned and fleeting nausea (no vomiting yet). For me (mum)still a walk in the park compared to the chicken pox hospital admission back home.
Caitlin is brighter on waking and doesn’t cry when turned 🙂
The Kindle fire is again a saviour and she is currently sliding minions down the slide whilst catching bananas…..as you do!
Breakfast has been ordered. I made the mistake on the first day here of thinking I’d be clever and order the next day’s breakfast at the same time as dinner. Huge mistake. It all arrived together!
Doctor has been this morning. He’s pleased with how things are going. Tomorrow is a big day. She gets out of bed!
We’re 16 hours post-surgery & Caitlin is doing great. The epidural is doing it’s job keeping her comfortable. She’s in discomfort when being turned but that’s to be expected. Whenever she wakes up she asks me “We’re still going to the zoo aren’t we?” lest I forget that this is our plan on discharge from the inpatient ward.
The little girl in the neighbouring bed is on day 3. She seems fine apart from whenever the nurses go near her! Caitlin is chilled with the nurses & so different compared with how she was when admitted to hospital with chicken pox only 2 months ago.
The resident neurosurgery doctor has been along to see Caitlin this morning and is pleased with how things are going.
Somebody is awake and hungry.
DR PARK…came to see us about 3.15pm local time. As he walked in we jumped to attention like kiddies when the headmaster graces them. Two major spine surgeries into the day and he looks as if his day just started.
We’re rather relieved to report the surgery went well and Caitlin is now in Recovery room with Mum. We had all been nil by mouth and despite this, Kj who had been dookin it out on Mariokart in the siblings room, immediately enquired about Caitlin’s well being on collection.
Good news then!!!!!!!!
Rebel without a paws….
Kt was – mildly excited by the acquisition of a newly christened Princess Linnie last nite at the shopping ce…. mall. She also acquired a baseball cap for the St Louis Cardinals who are on a hot streak baby.
Kj bought cap glove ball and shirt for the cards. Happy days. Thanks Auntie! Thanks Nana!!
Kt and Princess Linnie, this morning set for sdr. She is currently in theatre and will be for the next few hours.
Her operation was scheduled for 11am, an even younger person being in before her. She was upbeat all morning, so cute when they gave her a relaxant exclaiming “my voice sounds funny” and about the nurse having three eyes.
We are now in the waiting room receiving hourly updates on progress. The staff are excellent, kj is ok, and her parents trying to stay busy.
Thank you all for your thoughts and best wishes.
Another busy day which started when we met Physio Jackie Bryce ( and her lovely assistant Steve; who videoed Caitlin) Fortunately Caitlin is very competitive so she enjoys physio assessments -and generally just showing off! She also liked the wall of mirrors and the opportunity to preen!
Caitlin liked Jackie instantly so she’ll be pleased that Jackie is one of her physios post-SDR.
Afterward we went to see Dr Matthew Dobbs. This is the esteemed Orthopaedic Surgeon who performs percutaneous lengthening surgery for many of the children having SDR @ St Louis Children’s Hospital. We had hoped, but were not naive to the possibility, that further surgery would be unnecessary. Dr Dobbs examined both of Kt’s legs and said that although the left gastroc (heel cord) had shortened, the right gastroc was also tight and so he opined that for optimum results both should be done. If the left gastroc only was lengthened, the tightness in the right would become very obvious and hinder Caitlin from developing a heel to toe strike. This is necessary for energy efficient walking. The lengthening itself is less invasive than traditional procedure and recovery is quicker. Dr Dobbs explained everything clearly and did not pressure us to make a decision. We decided though that for Caitlin to develop the best possible gait, that PERCS was better sooner rather than later. So she’ll have this surgery before we leave St Louis.
So yesterday we all got to meet a very important man……….Dr TS Park, the man who will change Caitlin’s life for the better. Having been around medical people all her working life, it takes someone special to impress Caitlin’s mum and who better than a man who has devoted his working life to helping disadvantaged children achieve their potential. The rest of the Ford 4 were equally impressed, not least Caitlin – who did as she was bid without question or commentary. Astonishing! Who’d have thunk it!! Unfortunately we didn’t get a photo of Caitlin with Dr Park as she fell asleep on the couch! We must get one before we go home – it’s quite a custom now 🙂
So Kt may need another surgery (to release her left heel cord) we just need to wait and see. If she does need it we’re in exactly the right place as Dr Dobbs is the best man for the job and there would be no messing about with red tape and lengthy queues in the UK. We do have some great HCPs back home though who understand why we decided to travel to St Louis and continue to support us.
The people in St Louis are friendly in a very natural way that is rather infectious. Tonight we’re off to a baseball game (The Cardinals v Washington Nationals) which will give us a chance to sample more St Louis cheer and give Kian something to tell his classmates about.
We’ve had phenomenal support from friends, family, colleagues, the school (& Caitlin’s ex nursery) and some people we barely knew before have stepped forward to help us fundraise.
The parents on the SDR facebook pages have also been awesome.
Finally, a huge big up and thanks to Sorcha’s friend from University Kathryn Hodgson who ran the Tonbridge half marathon for Caitlin. Not only did she manage to run it all in only 2 hours 2 minutes (awesome achievement – her first half marathon!) but she also smashed her fundraising target!