The Waiting Game....

We know the waiting game well, we parents of children with additional or medical needs.  Waiting for results, waiting for appointments, waiting for confirmation, waiting for the post, waiting to see if the treatment is working, our lives are a waiting game interspersed with rushes of adrenaline when the waiting stops momentarily and before we have to move onto the next thing we are waiting for.  But the waiting never stops, there's always something that could help, that may make a difference, that will provide some support - it's part of the special parent job description "must get used to waiting".

I have years of practice under my belt now, I have a Phd in waiting - I have stared at magnolia hospital walls,  flicked through a million gossip magazines in waiting rooms, jumped when the phone has rung....and still it hasn't ended, at the moment, while we change season in the northern hemisphere from Summer to Autumn, I spent today pruning back the shrubbery and sweeping up the falling leaves to take my mind off waiting.

Daisy needs more surgery.  We did not plan for her to have any more surgery.  The plan was always to focus on quality of life, manage her symptoms and keep her at home and as pain free as possible.  But this surgery is now essential, and it's also another major surgery.  Her Urology Surgeon and Main Surgeon will work together over around 5 hours to fix the prolapse in her bladder and mitrofanoff stoma and remove the remaining segment of her large bowel and close up her rectum.  The aim of this surgery is to ease the pain and bleeding that Daisy experiences every day and so easing this pain will help her quality of life which is always our measure for any procedure that she needs to go through.  We don't want it to happen but it's got to.  So having decided on this next stage we have to wait - 5 hour surgery slots with 2 top paediatric surgeons are not two a penny - they require a lot of co-ordinating, intially it was supposed to be this week, until the surgeons got together and decided that the bigger op would be required.  So now we wait for that magic date.  And once we have the date we will find ourselves waiting for the surgery to be over, the longest hours of our lives.  Then we will wait until she is recovered enough to come home.  And then we will wait for the next surgery - this time with a different speciality, neurosurgery.

Daisy has not been seen by the Neurology team since 2008, our minds have been focused on all the other issues going on with her.  But a geneticist appointment last week confirmed the thoughts that had been forming in our minds - children with Costello Syndrome have an increased risk of a condition called Tethered Spinal Cord, it's where the spinal cord is stuck to the base of the spine and can cause symptoms such as tight achilles tendons, bladder dysfunction, brisk reflexes, pain.....all the things Daisy experiences, suddenly it is falling into place, her deteriorating bladder, the heel cords that are tightening up and affecting her ability to walk so soon after surgery to release them.  The damage has been done, the effects are irreversible but without the surgery she risks losing the ability to walk and worse.  So now we are waiting impatiently for the neurology appointment to come through the door, and then we will wait for the MRI to confirm our suspicions (a lumbar xray has already shown suspected occult spina bifida), and then if those suspicions prove to be correct then it will be referral to neurosurgery then waiting for the surgery to open up her spine and release the cord......

Years ago I would have ranted and raved, I would have fought the system wanting everything to be done now, considering remortgaging to pay for private tests...but now I have learned, things will happen, there are only a finite number of hours in the day, week, month, the wheels will be in motion soon and we will be swept along as they turn...I just have to have patience and wait.  So we continue to enjoy having Daisy at home, pumping her full of pain killers at night time and hoping the surgeries will mean we can reduce the doses.

And in our bit of the world ruled by Aspergers we are also waiting - waiting for decisions by nameless people on Special Education Needs panels on whether they will start the process to assess our son for additional funding to provide the support he needs in school to help him succeed.  If they say yes then we wait for all the so called experts to submit reports to another panel for consideration and so it goes on...

You could go mad, willing time to speed up , wanting it all to happen now, and to prevent myself from doing so I keep focused and I also keep distracted.  Sometimes I get my running shoes on and pace the streets for an hour and when I come back I have worked everything out in my mind, sometimes I prepare all the paperwork that I know will come with hospital stays and sometimes, and this is the time my family dreads, I declutter and have a metaphorical cleanse of the house - it's all hugely cathartic and momentarily diverting from the waiting game...