Coiling On Hold

Hi all,

After an event filled weekend, and the excitement of going to Unitas this week I suffered a major setback today. I became cyanotic this morning, meaning that I did not have enough oxygen in my blood. Dr Hay was in attendance at the time, and opted to intubate me. As a result of being on a ventilator again, the possibility of going to Unitas to have the fistula in my head coiled has now been temporarily dashed.

I was so keen to go for another ambulance drive and see my caregivers at Unitas again, but alas, it was not meant to be this time. Moreover, I’m really saddened by the chance to have my fistula coiled, as this was deemed to hold lots of hope for me. It is this coiling that would have reduced my pulmonary pressure, and reduced the amount of effort it took for me to breathe and drink. As a result of the enormous effort it takes to perform simple tasks, I burn so many calories that I’ve only picked up 40 grams in a week. My weight is now 4,080kg, about 2kg shy of what I should be. It’s not a complete loss, as I anticipate that pretty soon I’ll come off the ventilator again, and I can have the coiling done – so keep rooting for me. In the interim though, I will be making a short trip down to the radiology department for an MRI Scan – this will take the guessing out of the situation with my fistula and the determination if it can be coiled or not.

Some good news to share is that yesterday, for my noon feed, my Dad, with the patience of a saint, managed to feed me my entire feed of 55ml by bottle. It was tough going, and I had to take a number of breaths and breaks during the 40 minute exercise. But my Dad endured, and before long the entire staff of the NNICU and my fellow inmates were cheering me on. Everyone was counting down for me: 20ml to go, 15ml to go, 10ml to go, 5, 4, 3, 2, 1 and then empty. Celebrations resounded around the unit and I felt very proud. My Opa and Oma, who were visiting when I started the bottle feed were SMS’ed; sadly they couldn’t stay longer as Oma was really taking strain. I suspect, though, that they were so elated at the news that they drove off the road! My Mom was also phoned, as she was still at home. She immediately hoped in her car and rushed over the hospital. By the time she arrived I had passed out into a deep exhausted sleep, but she was so thrilled, that pretty soon her hugs and kisses woke me.

My Dad was on a solo milk run this evening, as my Mommy has taken ill with flu and therefore can’t visit me for fear of infecting me or my fellow inmates. He did arrive quite late, and I was starting to get nervous that he’d forgotten the ever important stocking up of the milk fridge. I then realised that it was Monday, and that he probably went to gym for his regular thrashing on the squash court. Every evening when he comes to visit me after he plays squash I need to hear that he is approaching forty-something, and his opponent is barely thirty-something, and that’s why he doesn’t win. Or that he’s tired from coming to visit me every evening and therefore gets to bed late, or he’s preoccupied with my condition or something similar. I can’t wait to get out onto the court with him and figure this thing out, but that will be a few more years. Oh heavens, then he’ll be even older, and have more of an excuse!

With my being intubated again, I had to give up the privilege of my cot, and have reverted to lying on a crib again. I really am not too happy with this situation, as I am the biggest kid on the block, and my street-cred at being promoted to a cot was just beginning to be known around the hospital, and now I’ve been relegated back to a crib! I guess I still carry a great deal of street-cred having undertaken four ambulance trips, been to the other side of the Boerewors Curtain, and was the only kid to have a fully fledged mobile over my cot. Actually, pondering on this status, I’m confident my reputation has not taken too much of a beating.

Well, its time to signoff, as the morphine is beginning to win the battle with me to stay awake and write this blog. I will definitely keep you posted on my situation as the week progresses, and if there is any chance of my going to Unitas this week you’ll be the first to know. In the meantime please keep me in your thoughts and prayers, and send me lots of guardians and angels to watch over me and get me well enough to get to Pretoria as soon as possible. At the same time, spare a few for my Mommy-bunny, as this Cuddlebunny is missing her, and she must get well to come and visit me again.

Love,

Jarrod

Figure 1 Snoozing in Dad’s lap yesterday after drinking a complete bottle on my own

Figure 2 Here’s me tonight after being intubated earlier today

Tags: angels & archangels, coiling, Dad, guardians, Mom, MRI Scan, Oma, Opa, paediatrician, Unitas