Recently I was inspired by another blogger. Travelling a similar road with, from what I can gather, a comparable ethos. We seem to both be of the half glass full variety…well as much as possible anyway. In her recent blog she decided to tell it like it is, with no sugar. I have been opening a window into our lives here but there is a difference between that and keeping it open when a storm is blowing through. Usually I weather the storm quietly with a little insight after it has subsided. Today I issue a high wind alert. Let’s diarise a day of the “not so fun” type!
The noise that wakes me is hard to describe. It begins as a cough of the garden variety then comes the gag that has me fly out of bed faster than my body really wants to. Ten minutes of oral suctioning, through which she smiles, has us begin the normal routine. Bending stiff, uncooperative arms to remove a pyjama top and pop a fresh one on…pop makes it sound easy…it’s not. Then the other end. Antibiotics may kill the bug but they leave in their wake an unpleasant toileting experience. And I bet it’s no picnic for her either! Hands reach down to “help”…then touch the sheets. Lovely. More washing and the day has barely begun. Pauses in between to wipe a sputumy chin before socks and pants struggle to crawl up on to constantly kicking legs which I don’t always successfully dodge. So the routine is interspersed with cries of “stop please”, “be a good helper”, “ow it hurts when you kick me in the ribs” and my favourite “youll know how much that hurts one day when your boobies are big”!
Rolling into the kitchen to begin administering the ten morning medications (yes ten) and start her PEG feed has me running for tissues to catch violent sneezes complete with dried clots …then fresh blood as she starts it running. Excessive coughing means a lot of air in her tummy so I vent to make her more comfortable. The enthusiasm with which air leaves the tube make stomach contents spurt out of the open syringe too…”clean up on aisle 1!” Wouldn’t it be great if the clean up were that easy? For some odd reason I think it’s a good idea to park her on the rug so she can watch television while she has her breakfast. Coughing continues as I try to tackle a few chores. Try. Wash one dish, run to her to wipe her mouth. Wash another dish…run again. Put washing in the machine…oops too far to run this time so the phlegm hits the carpet before I can catch it. “Clean up on…” Is talking to oneself really the first sign of madness because I think I’m a little further along?
And so the morning goes. Cough…run..wipe…cough…gag…run too slowly…vomit follow through hits the floor. Clean her, comfort her, wipe the wheelchair, scrub the carpet. The thermometer says she is still too warm. By 11am we are both weary and the washing machine is tired. By noon I can venture out of ear shot long enough to have a quick shower. I come back to a calmer girl but she sounds different now. The coughing has settled but she rattles from her chest. This is just a cold but it is so hard for her. And now, with her chest sounding like a pack a day smoker, I am betting she has aspirated fluid into her lungs. Off to the clinic we go. The doctor confirms my I-have-been-here-before-mothers-instinctive-diagnosis. Missy’s dodgy swallow has allowed her to breathe gunk into her lungs. We drive home, via the pharmacy, to give more meds and finish her lunch before putting her into bed for a nap.
My thought was to diarise a day in the life with a child who has severe cerebral palsy and epilepsy…and a cold. But I am exhausted. It is only 1:30 pm but the rest of our day will involve more of the same…with some chest physio…and making dinner for her brother…also the breakfast routine in reverse at bedtime…plus more I am sure. I have copped every bodily fluid today (with the exception of ear wax if that can be considered a fluid). To summarise…she coughed and I ran. Now for a cup of tea…quickly, before she wakes up.