Cry Me A River

Hi all,

Good grief, no one mentioned how painful and uncomfortable this PEG procedure would be! I’ve done nothing but sob for 24 hours. It all started at about 14:00 yesterday when I was shipped off the theatre, for my sixth procedure in my short little life. Fortunately this procedure is pretty routine, so I didn’t need to go all the way to Unitas again. It was cool to see a different theatre than the one I’m accustomed to in Unitas. All around me there were also a bunch of new faces that I wasn’t familiar with. My Dad, who has opted to use his bike as his sole mode of transport at the moment, arrived at Morningside Medi Clinic within 30 minutes of getting the SMS that I was going into surgery. Mom was already in the theatre prep area, but my Mom and Dad managed to arrange for me to be wheeled out again so that I could get last Daddy kisses before going under the knife.

The actual procedure wasn’t long – about twenty minutes in total, during which time a liver biopsy was done, and the tube was inserted directly into my tummy via the PEG procedure (percutaneous endoscopic gastrostomy). As part of this procedure a scope was pushed down my throat, which has resulted in my throat being incredibly sore. Because I’m only a baby, my trachea is far more narrow than that of an adult. The net effect is that a tube with a camera on the end, that has a diameter larger than my trachea, was forced down my throat so the surgeons could see what they were doing inside my tummy, when attaching the PEG to the wall of my stomach. The nissen of Oddi / Glisson’s sphincter in my throat was not done, as it was decided this was no longer necessary.

After the surgery I wasn’t out of anaesthesia for more than a few seconds when I felt the pain and discomfort. I screeched so loud from the pain that Mom and Dad heard me outside the theatre. Mom was galvanised into action and barged into the theatre to be with me. She looked quite funny with scrubs half on, half off, as in her hurry she didn’t bother with putting them on properly. She picked me up and held me close, and immediately my little world felt safer again, but not less painful. I screamed and cried, looking tearfully at my Mommy wanting her to take away the pain. She tried her best, but all she could do was hold me tight and bark out demands for painkillers or sedatives, or something to dull my central nervous system.

Another first was achieved when I was carried out of theatre in Mom’s arms, instead of being wheeled out in a bed. The bed did follow, and caused a great deal of congestion behind me, but I didn’t care, I was in my Mommy’s safe arms. Up the lift we went, me howling, and everyone else stunned to silence, with very grim looks on their faces. Mommy continuously whispered in my ear to comfort me, and although I really tried to be brave, and a big little boy, I couldn’t as the waves of pain overwhelmed me, and involuntarily I squawked at the top of my voice. Later Mom and Dad confirmed that this was the loudest they had ever heard me scream.

Not only was I in pain and discomfort from the procedure, but I was also starving, as going into surgery one must have NPO (nil-per-mouth, or in non-medical terms, starvation). As my surgery time was not confirmed on Monday, the NPO was started at midnight already, in the event that I go into theatre early. Later on it was discovered that my surgery would take place late afternoon on Tuesday, so I was given a mid-morning snack to tide me over (yeah right). Since the procedure was done to my stomach, I also couldn’t take my feed after the surgery, for another 24 hours, while the PEG settled and my stomach wall became accustomed to it. So when I finally did get a feed today, it was more than 30 hours since my last meal, or in adult terms, ten meals!

Throughout all this time I did nothing but scream: I screamed about the pain, the discomfort of the tube, the fact that my liver had a small section of it removed, and the fact that I wasn’t being fed. Scream, scream, scream. All the sobbing and crying made my already sore throat go hoarse. Mom and Dad tried everything to comfort me, and arranged drugs and painkillers, but nothing seemed to help. This was just something I had to work through.

As Dad had to go to work the next day, he couldn’t stay with me too long into the evening, and left sometime before midnight. Mommy, on the other hand, stayed until two in the morning, when I finally drifted off into a spasmodic, nightmare laden sleep. The few hours rest did me well, so by morning I had mustered up enough energy to protest at the world and demonstrate my absolute displeasure at what I had been through. And how did I do this? Through more screaming and sobbing. I really didn’t want to upset the whole ward, but my instinct took over and I could no longer be strong. It was time for the baby in me to come out, and so it did. No holds barred.

My ultra dedicated Mommy arrived early this morning again. I was still sore, and I was still crying, but I could see the tiredness and distress in her eyes. She held me close, cuddled me tightly, but even this did not take away my pain and discomfort.

Eventually there was speak of food, and I began believing that things were starting to look up. For an iota of time my pain and discomfort was forgotten at the novelty of being fed through a tube directly into my tummy. I really felt like I was now truly part of the digital age where there was instant everything – my food now doesn’t even have to go through my mouth or throat. Sadly the pain and discomfort soon superseded my eagerness of being a member of the digital age, and the sobbing took over again. More time was spent with my wonderful Mommy comforting me.

Late afternoon Dad arrived to find two exhausted loved ones in the ward. One exhausted from sobbing, crying and fighting the pain and discomfort, the other from trying to sooth, pacify and placate the former. Dad held and comforted me for some time, and then feed me through my newly acquired appendage. Early evening brought with it the need to re-drip me, and Mom and Dad were asked to excuse themselves from the ward. I hardly felt the pain of the needle of being re-dripped in comparison with all the other pain I’m feeling. Soon the drip was in, and Mom and Dad were invited back into the ward. Shortly afterward some more drugs were introduced through my drip, and for the first time in 48 hours I felt the weight and burden of pain and discomfort lift to be replaced by drug induced sleep. As I was drifting off I heard Mom click my iPod to my favourite sleep-time music and I started settling.

Some time later I faintly felt the brush of Dad’s lips on my cheek as he whispered goodnight into my ear. Mom followed suit some time later, heading off home for some desperately needed sleep preceded by a hot bath.

The results of my liver biopsy are still outstanding, so I’m not sure of the degree of cirrhosis or fibrosis in my liver, but the results will soon reveal that. Needless to stay my homeward bound status has been somewhat compromised for now, until I’ve satisfactorily recovered from this last procedure. I guess that’s the incentive for me. On the upside, my paediatric-cardiologist examined me today, and was very satisfied with the condition of my heart since the Amplatzer and coils were deployed in the fistula in my head during late September. Additionally, her recommendation is to remove the micro-catheter that is still inside me, running from my groin into my head, but that will be a future procedure.

Well, that’s it for tonight. Please keep me in your thoughts and prayers as I go through this extreme discomfort and pain, and send me hosts of angels, archangels and guardians to lift this veil of soreness that encapsulates me at the moment.

Good night.

Love, hugs and kisses,

Jarrod

Figure 1 An unhappy cuddle-bunny

Figure 2 A close-up of the PEG tube into my tummy

Figure 3 Finally asleep