Hello everyone!

Some decisions have been made about my next steps and I thought it prudent to let you all know about these without delay. My paediatrician, Dr Nicolleta Hay, the intervention-radiologist, Dr Pieter Fourie, as well as the paediatric-cardiologist at Unitas, Dr Fritz Potze have all come to the conclusion that it will be better to delay my next procedure until I’m six months old. My Dad did not take this news too well, but after much discussion and revisiting the prior pros and cons he is also on board with this decision. Basically, the decision pivots around the fact that I’m really strong now, and the prior embolisation was purely done as an emergency to ensure my immediate survival. Given my recovery, and going from strength to strength, it was agreed that there is no urgency to have the second embolisation done.

An advantage of putting off the procedure until I’m six months old is that my arteries will be so much larger than they are at present. This will allow a larger catheter to be used during the next embolisation. A larger catheter means more sterile super-glue can be discharged via the catheter into the veins requiring embolisation. You will recall during my last embolisation, four pedicles were closed off, and while pursuing a fifth pedicle, the glue set inside the catheter before being discharged into the offending vein. Additionally, in six months my little body will have grow larger and stronger, allowing for the use of more contrast (iodine) during the procedure. During the last embolisation my body weight allowed for only 20ml of contrast, which the surgical team pushed to 22ml in an attempt to close off the fifth pedicle. As mentioned previously, this fifth pedicle proved too ambitious for my size body!

The immediate next steps will be to undergo a liver biopsy, as per my blog of last night. This will be done in the next couple of days, and is a really simple procedure, needing me to be under general anaesthetic for only a few minutes. Once I am able to feed on my own I will be discharged and will finally be able to go home! Yippee!

I’m definitely getting better at this self-feeding thing, as this evening I managed to latch and suck on Mom’s breast for almost 7 minutes. The last part of my feed was administered by my Dad via my feeding tube. I snuggled into his arms while he held the syringe from which the milk flowed through the feeding tube into my tummy. After my feed I had a long snooze in my Dad’s arms; I was so comfy in his arms that I kicked up a hung tantrum when I was put back in my crib. I gesticulated my protests to such as degree that I pulled my feeding tube right out! It’s actually a sign I’m trying to give everyone that I won’t need this tube much longer. Mom and Dad then stayed for a little longer to calm me down – I heard them sneak out the NNICU just after I nodded off to a nice peaceful sleep in which I started dreaming about coming home to my wonderful room, and meeting Shatzi, Sonic and Maple, the three kitties that Mom and Dad keep telling me about. I also can’t wait to meet Jake and Roxy, the two staffies that patrol the garden, and hear the chirp of all the wonderful little birds that my Dad has spent years attracting to the garden to make it a tranquil and soothing place.

Well, that’s about it for now.



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1 Comment on New Decisions, New Directions

  1. Jenny says:

    Hi Jarrod’s mom,

    We have just found out that our little one still 37 weeks inside, has the “vein of galen” do you mind if i ask you soem questions?
    When did you find out?
    When did he have his first op?
    Was his heart having problems in the begining?
    How is he now?
    I think Dr Fourie will also be working with us, we are from Joburg, and going into Olivedale Clinic


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