Hospital help.

I've spent a lot of time lately thinking about the time we spend in hospital, which we know will now increase. His planned IV's are every 12 weeks (it will all be approximate, according to how symptomatic he is, and working around real life - but the plan is for four times per year) and while we hope for some of that to be home IVs (where I administer his IV drugs myself here), we need to assume we might be in hospital for the full two weeks each time, as going home is dependant on how he is feeling, the bugs he has, and drugs he needs at that time.  

Therefore we need to plan for at least eight weeks a year on the ward... plus clinic as an outpatient (about 10 times per year), plus tests.... all of which means around a fifth of our year is spent in hospital. The advantage we have now is being able to plan for this. Thanks to amazingly supportive grandparents, aunts and uncles; and it’s worth saying here that our kids have five wonderful grandparents, all of whom help us, mostly with our two daughters or Obie (the most handsome dog in the world) allowing me to focus on Isaac (and work when I can from hospital) and Dan to look after the girls and keep working (as he is self employed, this makes sense).

While we're on the ward, our days are filled with treatments: IV drugs and physiotherapy, maybe 8/9 times a day; visits from Doctors, Dieticians, Psychologists, Play Specialists, Hospital School; meals; much needed rest and downtime. Although it appears that he is in bed much of the time, it's pretty exhausting and overwhelming for him, especially as we get very little sleep. 

On the otherhand, over time we get a little stir crazy and down... and it's times like these where visitors are our saviours! So, if you would like to help (and so many of you do, always, and we thank you so much) here is how to help us best:

Best visiting time in hospital is between 4-8pm, when the physios have gone home and we're most likely to be in our ward, he is getting bored of me, and before we get super tired. Don’t stay too late; we have to go to sleep super early as our sleep is so broken.

Please text us rather than call, it’s lovely to have contact, but due to being on a joint ward, it’s rarely easy to talk. Isaac has his own phone now too, so friends, if you want to text him directly, let me know and I’ll pass on the number. 

There is no need to bring him presents; a far more valued gift is your time. If you can play computer games, chess, shithead or fussball.... you are my hero..... as there is only so many hours a day I can take! 

Please try not to let it show if you find seeing him upsetting. He will, at times, have various tubes coming in and out of his body, and his weight fluctuates hugely (especially when on steroids). He has enough to deal with, without worrying about what other people think (sorry if that sounds harsh). We like positivity in our lives - come in smiling. 

He actually prefers visitors when he gets home; Typically he is continuing on IVs or recovering from them when we get home, and this is the best time to see people, as he has more freedom, he is back in his own environment, and is gaining his energy back. IV antibiotics leave you feeling exhausted. 

Help in entertaining Anouk and Rosa is probably the biggest favour we can ask for. Knowing that they are happy allows us to focus on Isaac and getting him home. And they want and need some happy distractions at these times. 

As positive as l like to be, the separation, the worry, the pain...it affects us all x