I’ve Scored (Another) Century

Hi everyone!

Those of you that are new to my blog will be wondering where the first century came from. It’s quite simple really, on Tuesday, 19^th August, 2008, I reported in my blog that my mailing list had exceeded one hundred subscribers. To join this growing list of subscribers, click here.

My second century comes from the comments, that you, the reader, place on my blog. Earlier this week, on Monday, 1^st September, 2008, the one hundredth comment was made on my blog by Lisle (click here to see her comment by scrolling to the bottom of the Out and About posting). Gooooooo Lisle! Needless to say, my Mom and Dad were eagerly monitoring the blog on Monday to see who and when the big “one double oh” comment would be made. Also, I must point out that the comments placed on the blog are over and above all the wonderful emails and SMS’s that you continually send to my Mom and Dad. I really look forward to the evenings when they read the comments, emails and SMS’s to me; it brings tears to my eyes knowing that so many of you keep me in your thoughts and prayers, day in and day out. I can’t begin to imagine how to thank all you, but know that I’m eternally grateful.

Now, back to the more serious stuff, like my health. You will recall that in my last posting I reported that I’d tipped the scales at 4kgs. Sadly, during the week, my weight dropped below 4kgs again, at which point Dr Hay decided to put on 2 hourly feeds to get more food into me more frequently. It seems to have worked, as after a few days I was back to over 4kgs, weighing in at 4085 grams. It’s still not the ideal weight for a fellow of my age, but I’m getting there. Sadly, in the latter part of the week I dropped below 4kgs again, to end off the week just over 4kgs! I know, I know, this sounds like an equities market report for Brent crude with the impending hurricanes and tropical storms threatening the Gulf of Mexico.

The increased frequency of feeding is playing havoc with my routine though. These days I barely get a chance to settle down after a feed and I’m woken up again for the next feed. My advice to anyone out there is to not try two hourly meals, it gets really hectic. Furthermore, as a result of the increase in volume and frequency of feeds, I’m not as hungry as I would be under normal circumstances. As a result, when Mom and Dad come to visit me, I cannot suck on the boob or bottle as I’m full-up on food, and don’t really want to take in more. Admittedly, to appease them, I do suck little bits, but not the large quantities I was drinking on my own last week. So the majority of my 12 daily feeds are via a nasogastric tube. As cool as it is to have the food go straight to my tummy (as in real fast food), it has its disadvantages. Firstly, it is uncomfortable cruising around with a tube dangling out my nose 24/7. Secondly, the tube irritates my nose, to the put that I’ve now got a huge sore on my left nostril. My caregivers regularly apply soothing topical cream to this wound, but it really itches and annoys me, and I know I mustn’t scratch off the scab, or else I’ll have a horrid scar there. I’ll only be a few years old and already look like I’ve been in a bar fight!

My Opa comes to visit me regularly now, and he normally leaves quite emotional. I think he’s so happy that I’m around, but at the same time he is so sad that I can’t come home. Oma is still weak from the chemo, so she doesn’t get about much, but she still visits at least once a week. I heard last night that she had 1.25 litres of fluid drained from her lungs, in lieu of having chemo. Granny is back from holidaying at the coast with my cousins Ryan and Tamsin and aunty Kim. She could hardly wait to see me. The really funny thing is that Granny had to delay her visiting me a few days, as while she was at the coast, their puppy Labrador chewed the registration plates off her car! She contemplated driving to the hospital illegally, and then thought the better of it.

Thursday was a bit of a rough day again, as I struggled to breathe and settle down. My Mommy rushed here from work and held and soothed me for most of the day. She left again late in the afternoon to go back to work, and to fetch Dad from work, as they travel together most days – a small attempt at reducing their carbon footprint. On the up side, Thursday held a change for my immediate infrastructure, in that I was moved to a cot, as I was rapidly starting to out grow my crib.

Religiously, Mom and Dad both came to visit me on Thursday evening. I really don’t understand where they get the energy from to visit every evening for a number of hours, and then still go to work the next day. I truly feel I’m blessed with such tenacious and persistent parents.

Dr Hay and my Mom and Dad had a long chat on Thursday evening, a continuation of the numerous and frequent communications they have been having during the week. It is for this reason that I have been a little slack in writing a blog during the week. I was really not keen to disappoint all my fans out there, but I feel it is time to reveal that my prognosis over the past view days has not been good. Because of my oscillating weight, my troubled breathing, and the general state of my heart, lungs and the fistula in my head Dr Hay and my folks had solemn discussions about my longevity. The concerns were really around my not picking up weight to be strong enough and big enough to undergo the coiling at age six months. During this period, my condition could easily deteriorate, to the point that the fistula in my head would become reversible. This would result in a very poor prognosis for me, the outcomes of which I think you can imagine for yourself. Obviously alternative procedures would have been explored, but all around there was not too much hope for me.

Fortunately though, on Friday things made an about turn! Dr Hay and her colleagues, together with Prof Fourie and his team at Unitas, agreed that there was no point in waiting until I was six months old to perform the coiling, and subsequently it would be scheduled for next week. My Mom and Dad received the news late on Friday afternoon and, although at work, both cried with joy. I must point out that it is a Catch 22 situation, as I could wait until I was six months old, but I may not have improved in terms of my strength and weight. Additionally, as mentioned above, the fistula may have deteriorated. With undergoing the procedure next week, I am not at the ideal weight and size, so there are risks associated, but the coiling, which occludes the fistula, will result in reduced pulmonary pressure, and therefore enhance my ability to breathe easier, burn less calories with normal activities, and therefore stabilise my overall condition.

I will keep you all posted on my arrangements next week, regarding when I’ll be moved to Unitas and the date of the procedure. In the meantime, please keep me in your thoughts and prayers leading up until then.

On a high note, I’d like to end off today’s blog with some of the highlights of this week. Owing to my dire situation, the frequency of my visits and numbers of visitors went up. As already mentioned, Thursday morning my Mom spent a whole lot of time with me, as well as having my Opa and Granny visit. The same on Friday morning; Mom, Granny and Opa visited. Saturday my Mom arrived midmorning and spent just about the whole day with me. She took me outside again for a quick walk about the balcony. Unfortunately Dad wasn’t there to share my second little sojourn, but I understand that he stayed at home to get some well deserved rest and do some of the sorely neglected household chores such as tending to the pool, collect the mail, and getting his bike cleaned and running so that the battery didn’t run flat. I have a suspicion that Dad’s visit tomorrow will be by bike. He always looks so cool and mean cruising into the NNICU in an armoured jacket, helmet and goggles in hand, only to pick me up gently and sensitively a few moments later. Obviously the contradiction of this image is the cooler box the carries with him containing, wait for it, baby breast milk! I think if he is ever stopped and searched at a road block the police would have a right royal chuckle at the mean looking biker dude transporting a little cooler bag of expressed breast milk!

Well that’s it for this lovely spring Saturday afternoon. I really wish I was out there seeing all the trees starting to bloom and the flowers sprouting forth colourful petals, and the grass turning green. Watching the bees buzz around carrying pollen to their hives and birds building new nests in preparation for summer. But I guess my time outside will still come and I think I will be truly appreciative of every day that I’m out and about and healthy, as I’ve learnt early on already not to take anything for granted.

Love,

Jarrod

Figure 1 View of my cot, which replaced my outgrown crib

Figure 2 Mom adjusting the cannula that deliver oxygen to me

Figure 3 Mom and I – check all the toys that already adorn my cot

Figure 4 Having a snooze in Mom’s arms

Figure 5 Snoozing with Dad

Figure 6 Back in my cot, being nursed prone

Figure 7 Being tube fed

Figure 8 Veronica, my night nurse

Figure 9 Dad and his strange antics

Figure 10 Now I understand – Dad was using a drip-stand to retrieve a tub of cream

Figure 11 Dad bottle feeding me

Figure 12 Dad’s self portrait of ‘Human Mobile Holder’

Tags: Dad, Granny, Mom, NNICU, Oma, Opa, paediatrician, Unitas