Now more than ever in these terrifying and uncertain times, I need to keep my child well to avoid a hospital admission. When that same child has had seven inpatient stays in less than four months, the odds are stacked heavily against us.
The last couple of weeks have been rough to say the least, caused primarily by Jaxon being full of a cold leading to intermittent desaturations throughout the night. He’s also teething and struggling with reflux, we’re awaiting a GJ tube placement to enable us to feed him directly into his bowel and hopefully alleviate the relentless sickness we deal with on a daily basis. Add all these together and it’s not an ideal combination for settled days and restful nights.
I’m caring for Jaxon entirely alone at the moment to protect him as best I can. The sleepless nights and none-stop mumming during the day are taking their toll and I’m worn down. I’m trying to keep my chin up, I’m reminding myself regularly that this isn’t forever and that life will return to some sort of normality once again. I find by telling myself that I’m not dealing with this alone, the whole world is going through it too, helps marginally.
But doing it alone, well it’s hard
The time we spend at home is filled with fear and anxiety at the best of times. No sooner as Jaxon is discharged, I’m waiting for the next admission. He’s not a medically well child and unfortunately regular hospital admissions are just a big part of our lives.
That fear is now magnified on an exponential scale. I’ve had full blown panic attacks, cried every single day and become so stressed I can barely even manage to eat due to the paralysing fear that Jaxon may end up back in hospital before this crisis is over.
I struggle to manage the fear on a normal day but I’m able to keep us busy, introduce Jaxon to new experiences and spend time with people we love to enable me to push through. I try ever so hard to enjoy the time we have at home because I know I can blink and find that we are back in hospital once again. Keeping us busy at the moment isn’t as easy and my options, as with everybody else’s are limited.
But I have to try and carry on.
I can’t let myself become so consumed by fear to the point I’m no longer able to parent the child I love so deeply.
That fear became a reality on Thursday last week when after night after night of dealing with an unsettled Jaxon, I was advised to take him up to hospital to have him checked over.
I’m unable to put into words how I felt driving up to the place where I knew there would be a chance, no matter how small, that one or both of us could come out worse than when we went in.
I choked back the tears as I walked straight up to the ward. I was given a mask to wear as I headed with Jaxon to the assessment ward. The silence was deafening and the reality of the situation we’re facing sunk in.
He was given the once over by the doctor and after what felt like the longest four hours in an incredibly long time, thankfully we were given the green light to go home.
As I walked out of the hospital, my mask still on my face and Jaxon’s muslin cloth draped over him slightly in an attempt to protect him, I found myself holding my breath, almost running down the corridor to get through the doors. I drove home, I felt numb. Those four hours had run me into the ground. I wanted to get home and lock us away from the world again.
I realised once home that despite the fact that the fear of Jaxon being admitted to hospital in the future will never leave me. When all this is over, that fear won’t ever feel as great as it does in these current times, it won’t ever crush me like it did on Thursday.
And for that it’s highly likely I will feel just an ounce of gratitude.
I know there will be many parents out there who are caring for children who are medically compromised in one way or another. I know they too will be feeling that intense and debilitating fear that I feel. To each and every one of you, I so desperately hope you can all get through the next few weeks and months without having to see the inside of a hospital.