Sunday, 17 July 2016

The reality of having a medically fragile child







In the last six months, Jess's health has significantly deteriorated, and as a result her medical management has become very complicated. Multiple, unexpected emergency hospital admissions take their toll and affect every family member and aspect of family life. We have found that we have had to completely adjust how we live our life, sometimes in the most unexpected ways....



At home:



  • I no longer buy a week's worth of food through online shopping, as Jess will inevitably get admitted on the day of, or on the day after, its delivery and it will end up being thrown away
  • I always try to keep up with the laundry so we always have clean clothes ready to go into hospital with 
  • I always try to leave the house tidy. We never know who might next be in it - either collecting supplies for the hospital or looking after Anna.
  • We always try to have a back-up child care plan for Anna - everyday, just in case
  • When booking and planning days out or holidays, we do it knowing there is a good chance it won't actually happen
  • When booking and planning days out or holidays, we not only have to consider where the nearest A&E is, but also where the nearest paediatric intensive care unit is (only specialist hospitals have these units)
  • When booking and planning days out or holidays, we have to consider how complicated it would be, and how much money we would lose, if we had to cancel at the last minute
  • Despite the above, when Jess is at home and well, we try to plan lots of things as we don't know when we will get another chance
  • When booking and planning days out or holidays, we don't tell the girls until the last minute so they don't get disappointed if it doesn't happen
  • If we have a list of chores to do (and when don't we?) and some free time, you can't say "I can't be bothered, I'll do it tomorrow" as you may end up in hospital tomorrow and be there for weeks -  therefore you never really sit down and relax
  • I carry round pretty much all Jess's medical letters with me (which explains my huge handbag), just in case we end up at a different hospital or with a doctor we don't know
  • When I ring my husband at work, he never knows if I'm ringing to ask him to buy milk on his way home, or to tell him that Jess is in an ambulance on the way to hospital and isn't breathing
  • I'm NEVER without my phone. If I go swimming, I give school the number of the swimming pool reception....  Just in case 
  • Jess's wheelchair no longer always fits through doorways, due to the vast amount of medical equipment we have hanging on it





Our hospital experiences can also be somewhat unusual:



  • When the paramedics radio ahead to say they are bringing Jess into resus, the A&E staff  reply with "see you soon Jess!"
  • We are on first name terms with the staff in A&E, all the paediatricians and the ward staff
  • When getting our bed space ready, the staff on the ward set up all Jess's emergency equipment, including a "Frozen" DVD
  • Everyone gets excited when you go 8 weeks without an admission
  • When you arrive on the ward, other patients already there think you are a celebrity because all the staff rush over to say hello and give you a hug
  • When you get admitted for a chest infection, all the hospital staff are really excited - because it's not a urinary infection this time
  • The same doctors that you try and dress smartly for when seeing them in outpatients (in a vague effort to try and convince them you are sane and responsible, so that they listen to and act on your opinions and requests) end up seeing you on the ward - just out of the shower and wearing your pyjamas.
  • The above-mentioned doctors also wake you in the middle of the night, and observe you trying to be sufficiently coherent to answer whatever obscure questions they are asking, whilst half asleep, bed-head hair, no contact lenses in and unable to find your glasses
  • You get used to sleeping in a bay with six (often crying/screaming) children and six snoring adults (who are often ignoring said crying/screaming children), lights on, alarms going, phones ringing, bleeps bleeping, doorbells ringing etc etc etc. 
  • You actually sleep better in the above environment than at home, as listening out for Jess, and ensuring she is alive, is someone else's resposibility
  • Anna will request which hospital, and which ward, she would like Jess to be on, depending on what toys she wants to play with that day
  • I know where things are kept on the ward better than some of the staff





Despite all the above, we try very hard to give the girls a childhood as "normal" as we can (whatever that means!). This is helped by the fact that when she is well, Jess loves days out, holidays and new experiences. We want to build as many family memories as we can, while we can. Who knows what the future holds? 







6 comments:

  1. We love you all just seeing jess laugh and smile with you all shows what a dedicated family you all are

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  2. Thank you for sharing. What a fantastic family team you are, strong and happy despite everything. x

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  3. Jess has my heart! You guys have been through a lot. I cried after reading this but so happy for Jess to have such amazing parents. I know Jess sees how strong you both and her sister Anna are to her. Love and hugs to all your family. Ping xoxo
    www.espritdelavie.com

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  4. Thanks for the update, Liz. Hugs and prayers for you all. XXX

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  5. Hi Liz. Your blog really touches me because I'm 18 and have a little sister (2 years younger) with Rett Syndrome and I understand the impact that Rett's girls have on your life. Thanks for sharing, your family will definitely be in my prayers tonight.

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  6. I just wanted to say hi to you all. I am sorry to hear Jess has been unwell. Both Jess and Anna are growing up so fast. It is always good hearing updates on this blog. Take care and I hope the next 6 weeks of the summer holidays go ok. Natasha xxx

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