Hi everyone,

The latter part of the week was a quiet one, although, as you are aware, the week started off a little hectic. You will recall that on Monday I was intubated and placed on a ventilator again, and this resulted in my not being able to go to Unitas this past week to have the fistula in my head coiled. After the stress of my cyanotic episode on Monday and being re-intubated, it was decided on Tuesday to place me on a more advanced and comfortable ventilator called an oscillating-ventilator. This type of ventilator is far more gentle, and attempts to recruit more lung capacity. When my Dad saw me on the oscillating-ventilator on Tuesday evening, he got quite excited, as he could see this machine was hi-tech. Additionally, this ventilator was brand new, as it was still in its original packaging, only having been used once before. The primary difference between my prior ventilator and the oscillating-ventilator is that it is gentler, by rapidly pumping short bursts of air into my lungs, as opposed to the slow, long bellowing motion of a typical ventilator.

As a result of being on the oscillating-ventilator, my chest made a rumbling sound, and Dad reckoned my chest vibrated a little. I spent the entire week on this machine, even though it wasn’t truly necessary. Dr Hay opted to keep me on the ventilator to recruit additional lung capacity from my prior collapsed lungs, and to ‘give me a break’ as it were, so that I didn’t burn so many calories breathing on my own. The intention again was to allow me to increase my weight, but I have not been weighed in a week, as this is too difficult to do while intubated. My Mom and Dad feel that I do look a little chubbier though, and hopefully the scales confirm this during the course of next week. In addition to looking chubbier, my Mom and Dad were convinced I had been stretched a little! So after much debate about whether I was indeed taller or not, it was decided to measure me, and, yes, I’d grown another 3cm, bringing my height to 60cm now!

On the downside, being on a ventilator for such a long time, and being immobile, I began to suffer from oedema, which is a fancy word for swelling. Basically I began looking like I had been in a bar fight in the wrong part of town. Fortunately this has began to wear off, and was nothing to worry about other than it caused my Mom and Dad major distress at first, and then an endless topic of teasing for my Dad.

The plan for tomorrow is to extubate me, and allow me to breath on my own. Immediately after being extubated tomorrow morning I’ll be taking a long awaited trip down to radiology at Morningside Medi-Clinic for an MRI Scan. I couldn’t undergo an MRI sooner, as I was still on the ventilator. Dad heroically suggested he’ll bag me and lie with me in the MRI machine, but this would not yield a clear MRI image, as the bagging would cause my head to move. I suspect Dad was quite excited by the possibility of this adventure, but his hopes thereof were dashed.

The MRI Scan will be considered a milestone in my journey to recovery, as the scan will reveal the shape of the fistula in my head. In order to successfully coil the fistula it must narrow at one end. I’ll explain the reasons behind this in a moment, as first I will describe the coiling process, and the intention thereof. The fistula in my head is basically a large cavity where a bunch of blood vessels meet. The prior embolisation that I underwent was an attempt to start closing off (occluding) the vessels entering this fistula as well as those causing the overall AVM. Through the process of coiling, a bunch of platinum wires will be feed and coiled into the offending fistula. These will either be introduced via a femoral vein, or by means of the back of my head – this is still to be determined. After the procedure is completed, there will be a length of platinum coils in the fistula loosely representing a spring. This is where I step in and let my little body complete the process on it own. My body will correctly consider and identify the platinum coils as a foreign object. This reaction will start an inflammatory response in and around the platinum coils. The inflammatory response will thankfully not be able to do away with the platinum, and as a result will begin to deposit little particles on and around the coils. This will result in the coiling ‘getting bigger’, and occlude the fistula, resulting in the blood in the fistula being discharged via the normal sized tributaries that flow to and from this area.

Earlier I mentioned that the fistula’s shape must be appropriate to accommodate coiling. Effectively the fistula must be narrow on one side, which will result in the coiling getting lodged in that narrowing. Without a narrowing in the fistula, the coiling may become mobile and travel along the veins and cause occlusions elsewhere in the body, which is undesirable, especially if that occurs in or near the heart. We are not even thinking of there not being a narrowing, as if that is indeed the case, the prognosis may not be that good, and a whole bunch of alternatives will need to be explored.

Enough about the medical stuff now and onto my social life. Mom started visiting again on Friday, after fighting off a bout of flu. While suffering flu or colds, visitors are not permitted into the neonatal ICU, so it was really great that she was able to visit again, as I missed her so. My Opa regularly visited during the week, as did my Granny. Oma is not strong enough to visit as frequently, so I only see her on Sundays after she and Opa have been to church. Today I learnt something about my Mommy that I didn’t know and that was that she loves to ride pillion on the back of Dad’s motorbike, so the two of them trooped into the NNICU, helmets in hand, wearing heavy jackets and neck scarves to protect them from the cold. Dr Hay spotted them and gave them a good old talking to about the dangers of motorbikes, where after she immediately said that she too would love a bike. Dad promised to take her for a spin when next there was some time, as Dr Hay had to rush off after seeing me and all my fellow inmates.

Speaking of inmates, a really cool little girl arrived here on Friday, all the way from PE. I thought I was well travelled already, having been in ambulances and almost on an EVAC helicopter, but she tops it, having flown up from PE on Business Class. Me and all the other little boys are really vying for her attention, but she won’t have any of it, firmly stating she’s not into us city slickers and prefers the surfer boys back at PE. Oh well, we did all try. I wonder if my bar-fight look-alike swelling might have swayed her.

Well, that’s all for tonight. Please hold thumbs for me tomorrow when I undergo my MRI Scan, that my fistula is the appropriate shape to be the subject of coiling. In addition, please keep me in your thoughts and prayers, and send me as many angels and archangels that you can muster up to protect me and ensure that I do undergo my coiling procedure this week.

Love,

Jarrod

Figure 1 Here I am, re-intubated

Figure 2 My super-duper new oscillating-ventilator

Figure 3 Sonic holding down the fort while Mom and Dad visit me

Figure 4 Mom and I

Figure 5 My brand new summer onesie that Opa and Oma brought me today

Figure 6 Daddy kisses

Figure 7 Goodnight!

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5 Comments on Hold Thumbs for My MRI Results

  1. Gillian says:

    Hey Big Guy

    You are looking really smart in your new clothing. Very smart in deed. Chicks from PE have no clue do they !

    We are all hoping and praying that the MRI goes off well and that your further treatment will not be delayed again. Please keep us posted Norwin.

    Love to Lynn and a hug and kiss for Jarrod.
    Gillian, Oliver, Ryan and Kirsten

  2. Bronwyn says:

    Morning little cuddlebunny.

    We are all thinking and praying for you today, that the MRI goes well, you will constantly be in our thoughts.

    Happy Birthday to your daddy as well, really hope he has an awesome day, sending him all our best wishes.

    Glad your mommy is feeling better and is able to visit you again, must have really been hard for her.

    Love to you and all and thinking of you.

    Love
    Bronwyn, Gary, Brannon, Rhianne

  3. Tanya says:

    Hey Big Guy!

    You are looking so amazing! Love the kit!

    I hope that your parents already have an answer from your MRI and what an amazing gift you will be giving your dad on his birthday! So give your daddy a ‘happy birthday’ hug and a kiss from me please.

    You look so content with the loving hugs your mommy is giving you. I really understand how much she missed you whilst she was sick.

    I love your super-duper machine! I am amused that your dad is still Mr techno-gadget man. When you are big you will have lots of fun playing with daddy and all his ‘big boy’ toys.

    Stay strong, you are doing so well.

    We pray for you every night.

    Lots of love
    Tanya, Anthony and Morgan

  4. Oliver says:

    Norwin
    Happy Birthday today. We wish you a birthday gift of good news about Jarrod and health and happiness for your family.

    There will be lots of time to celebrate once Jarrod is at home.

    Best wishes

    Lots of Love
    Oliver, Gillian, Ryan and Kirsten

  5. Claudi says:

    Hi there,

    Love that sexy suit!! Will hold thumbs for the scan. It is so great to have this blog, thanks for writing it. He does look bigger 🙂

    Love Claudi

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