Hello everyone,

The past two days have been tumultuous once again; I cannot seem to settle down into a nice rhythm of existence. Two evenings ago I was intubated, once again, and have been breathing with the help of a ventilator since. During Tuesday evening I became tachypnic, meaning that my breathing was extremely rapid. The doctor on duty, not wishing for my heart and lungs to take strain, opted to intubate me and ‘give me a break’ as it were. The reason for the tachypnia seems to be a really annoying mucous plug which is occluding my bronchus. It is expected, that were I bigger, this would not have been a major concern.

On the whole, my paediatrician (Dr Hay) is satisfied with my blood tests, haemoglobins and general state. She is not too concerned over the gallstones that were identified previously, and I remain on some antibiotics.

Dr Hay’s biggest objective is for me to now pick-up much needed weight, as I’m still a few grams south of my birth weight. As mentioned in my last blog, I’m on a diet of Infatrini for 5 out of my 8 feeds. Should this approach not yield satisfactory results, then she may consider placing a tube directing into my stomach via a PEG procedure. PEG stands for percutaneous endoscopic gastrostomy, which basically means making a tiny cut in my abdomen, and inserting a tube into my stomach via this incision, which then becomes my feeding tube. I presume it’s to feed me more stuff more frequently. If I indeed undergo this little trial I will let you know what the exact intention behind it is.

The other major concern is my raised pulmonary pressure, which is the blood pressure in my pulmonary artery, the artery that carries deoxygenated blood from my heart to my lungs. Incidentally, this is the only artery in the human body that transports deoxygenated blood, as once this blood passes through the lungs it is oxygenated and is distributed throughout the body to discharge oxygen as needed. Thereafter the deoxygenated blood returns to the heart via veins.

Dr Hay, together with the paediatric cardiologist, are exploring and researching the possibility and need for performing pulmonary artery banding on me. Basically this banding restricts the amount of blood flowing to the lungs from the heart via the pulmonary artery. The reason for this increased pulmonary pressure is because of the atrial septal defect (ASD) in my heart, which means that blood is passing from the left atria of my heart to the right atria, and the AVM. Ideally the interatrial septum should stop this flow of blood from left to right, but in my case this is defective, possibly from the AVM, or it could be congenital. Again, once I have news you’ll be the first to hear it.

On a lighter note, my Opa and Oma both came to visit me this morning. Ordinarily Opa would have come on his own while Oma was getting chemotherapy, but today Oma couldn’t undergo the course as her white blood cell count was too low. My Dad told me last night that Opa was coming to see me; you can image my surprise and excitement when my Oma also arrived.

This evening my Mom and Dad, like clockwork, came to visit. They spent a lot of time discussing the matters I’ve noted above with the doctor on duty, and he reiterated that these are alternatives that are being explored at the moment. Right now, the best approach is to take each day a step at a time.

Well, that’s it for now. Keep up those positive thoughts and sending the hosts of angels; it’s really wonderful to know that I’m continuously surrounded by all the wonderful guardians and archangels that you assemble for me.



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3 Comments on A Step at a Time

  1. Bronwyn says:

    Good morning special boy. I really can’t believe all the hurdles you have had to endure in last 9 weeks, it must be such a difficult time for you and your mommy and daddy. But we will all continue sending you all our love and best wishes, as well as the angels to watch over you and keep you safe, so you can get stronger and better. You are truly one amazing little boy with such a strong will. A special Super Star!!!

    Love and light to you all, you are all constantly in our thoughts and prayers.

    Bronwyn, Gary, Brannon, Rhianne

  2. Gillian says:

    Dear Norwin, Lynn and Jarrod

    Gosh when are all the obstacles going to be over. How many more “abbreviated and words we can’t pronounce” problems can you be hit with ? When you get through all this you will go down as one of the toughest kids ever. Always remember that you are in the best place possible, with people who are trained to look after you.

    Stay strong and use this time to rest up and gain your strength because when you do get “out” I have a feeling that you are going to be an on-the-go-24-7-365 kind of kid.

    Hugs and kisses
    Gillian, Oliver, Ryan and Kirsten

  3. Lisle says:

    C U D D L E B U N N Y…i can’t believe this, its as if you are on a rollercoaster!!! you haven’t actually been on one yet, but believe me, its a journey of thrills and anxiety all at the same time. You make me smile… I reckon you have really been giving the doctors “a good ‘ol head scratching” time. I believe that you “POP” aka Dad would give them a “run for their money” in the research department. Since I started reading your blog, I have had to try to keep up with him!!!! (God bless the internet :)). sorry to hear about Oma’s whiteblood cell count. I have a sneaky suspicion that your courage is very inspiring to her to keep winning – so good for you! We were delighted to “meet” your God Parents, they look awesome and fun, what a privilege for them!
    In your endeavour to get “phat” I have decided to look at your feeding tube not as a negative thing…….if it does work, you may want to ask them to leave it in, because when you taste your moms cooking, you will want more grub than you can chew. I recall your mom and I once having a discussion on the viability of having a choclate drip….not everyone shared our excitement though….. (personally i still think its a winner).
    Hope your Dad has recovered from his flu… Please send regards to your parents, and let them know that not a day goes by, without me thinking of them, and praying for you all. Cheers

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