A Step at a Time

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.

Love,

Jarrod

Tags: arteriovenous malformation (AVM), Dad, Mom, Oma, Opa, paediatrician