DAY 75

The last scan results were not as good as I hoped:
Brain - 1st lesion is slightly smaller. They found another lesion. Neurosurgeon's opinion is that both are small and probably caused by infection, so to continue the antibiotics treatment, no need for removal/biopsy.
Lung nodules - not much change from before. I guess consolation is that at least they are not spreading.
Liver/spleen - larger again, but no abcess/growth so that's good. However cannot determine exact cause of enlargement but can say that it is infection related.

The bone marrow extract and skin lesion smear show the presence of the TB group of germs, so the BCG vaccine has caused widespread infection. Doc has ordered a change in his meds to better control this so Ethan is now off IV Ampho and Fortum, and has started on a new drug, IV Cipro.

We transferred to Hi-D again on Tue afternoon. Reg noticed that Dopey was breathing harder and couldn't maintain his 02 saturation in the high 90s, so ordered the transfer so that they could put him on C-pap. He hated it. Was thrashing about and crying. His cry has become hoarse; I really preferred that loud strong cry that at least tells me he is well enough to protest mightily. The unfriendly design of the C-pap just pisses me off big-time. It obviously isn't designed for infants who have the natural sense to retaliate when foreign objects are stuck up their nostrils. The situation was aggravated when we had to insert the NG tube via his mouth now that his nostrils were occupied - Dopey just pushes the NG tube out within like 20 mins which meant that we had to re-insert the tube every 2 hours for feeding. Needless to say, he hates to have the NG tube pushed down his throat too. We struggled for hours, it was terrible. To add to that, the room we were in doesn't have that built-in niche where mum usually rests, and Hi-D doesn't allow the use of deck chairs. I was worried that Dopey will be super restless and difficult to handle that night plus daddy & mummy won't have sleeping spaces.

Luckily Dopey managed to sleep somewhat ok that night, except when he was awakened by the tube being forced down his throat during his feeds. Next morning, he had gotten quite used to the C-pap and at least wasn't trying to get it off his head but I still wasn't happy with the tight headband that left red marks on his soft head and the fact that the NG tube needed to be inserted every 2 hours. The discomfort is one thing, but the more serious consequence of that is that with such frequent insertions there is a higher chance of his nasal passage being injured, and it can't be hygienic to keep putting in that same tube. I'm glad that after hearing my complaints, the docs worked with the nurses and came back with a more comfortable and secure headband, and managed to have both the NG tube and nose prong in the nostril. I was so comforted when Dopey could smile at me again despite that contraption on his face, at least I am assured that he is not in too much of a discomfort.

6524 became available on National Day, so we shifted over that afternoon. Hurray, we got our niche and storage spaces back.

Dopey really lived up to his nick today. He slept from morning till late afternoon, through 2 chest x-rays, 1 long ultrasound seesion (liver/spleen), his eye exam when bright beams were shone into his eyes, his feeds, and most amazingly, the blood drawing and plug setting when Doc T had to prick him twice. Docs ordered the x-ray, ultrasound and blood tests/cultures bcos of his high temp spike (39.3) last night.

His eye condition seems to have worsen. There's a visible ring around his 2 scars and cloudiness. Eye docs are now covering him for bacterial and viral infections, and will review again next Mon.

Doc J told me today that they will go ahead with the bone marrow prelim search although the transplant is not 100% fixed to save time. We'll do the CDG genetic test and see how that goes although Dr T didn't think that is very likely. We'll also see if Dr L can get any new advice after he presents Ethan's case to his colleagues in Melbourne. The plan is that if both are negative, the various teams will decide if they all agree that this is a case of immunodeficiency, although they cannot find the exact name to this deficiency. If they do agree so, they will sit down and speak to us about the transplant.

Weight on Thu 8 Aug: 4.3kg with C-pap tubing and wrap (I do see some meat on his thighs now!)