DAY 125

48-hour blood culture results: negative
(Phew. No infection. Now what caused that spike of high fever on Fri?)

DAY 123

We've got good news today -- the Taiwan donor is a match... Dopey has a donor, yay!

Let me backtrack a bit, since this blog hasn't been updated for quite a while. I went back to work on Sep 3, so between work, visiting Dopey at the hospital, visiting Ashley at MIL's and sleep, there isn't much time for updates. Prepare for a long entry.

We first did a prelim search with the cord blood and marrow database in Singapore. The requirement is a 6-pt match for a bone marrow, or at least a 5-pt match for cord blood. What's in the database is only low-res test results, meaning that we have to activate and call any potential matched donor back for high-res testing to confirm if it were a perfect match (i.e. 6-pt match). We found 1 potential match for cord blood (5-pt) and 6 potential marrow donor matches. Since cord blood is only a 5-pt match, we decided to go with marrow donor testing, hoping to find a full match which is more ideal.

Of the 6 potentials, 3 are males and 3 females. As far as low res results available from the database show, all have equal chances of being a full match. It's better to go with same gender, and the younger the better. So we started with the 1st potential who is a male aged 36 or thereabouts I think. After some days, we were told that he either couldn't or didn't wish to donate his marrow.

So we moved on to the 2nd donor, who is about a year older. 3 days later we were informed that it was 1-pt mismatch, so that's a wasted attempt. They also found many potential matches from Taiwan, and the database there shows slightly more extensive test results, meaning that looking at the list it's more likely for the TW donors to be a match than the 3rd Singaporean male because there are some unknowns in the latter's case. And the youngest on the TW list is only 24, which is better (less wear & tear?). The only catch is that with a TW donor, the cost goes up by some SGD17K. But it's a no-brainer, of course we chose to straight away test the TW donor. And we strike jackpot with this one.

Now with a 6-pt match, they will conducted a further test for 2 more pts. If the 2-pts match, all the better for Ethan. But even if they don't, we can still go ahead with the transplant. And now as the next step toward transplant, they need to draw quite a substantial amount of blood (20-30ml) from him to test the various infection markers like Hep B, HIV etc. So naturally we are worried about him losing that large amount of blood. We'll talk to the docs over the weekend or on Mon before giving them the go ahead. And we will make sure the doc drawing the blood is someone familiar with him, since you know how difficult it is to find a usable vein with a good flow with him. I don't want him to be pricked more than necessary.

Btw, his long line is now on his scalp, above his right ear. It was a scary thought, when the doc says that if she can't find a suitable vein on his arms she will have to go to his scalp. But I guess now we are used to it. Looking on the bright side, with the long line on his head, his limbs are now free and Dopey can now sit fully in the tub (or rather, basin) during bath time. And he does like that.

Oh, and we just shifted out of Hi-D to Ward 75 now, in a similar iso room, but with a large overhead TV (ok, not that big, but when compared to that 14" one we brought in with lousy reception and no cable, this is a big improvement). And there's even Barney and Sesame Street. You shld see Ethan stare at the TV when it's on.

He has been doing so well, getting better and better, that the docs were planning to stop his IV meds, and also TPN once he can handle full milk feeds. Then he had a fever spike yesterday at dawn - 39.5 degreeC. Damn. They took blood yesterday for culture, and stool and urine samples for testing. 24-hour blood culture is negative. Am keeping fingers and toes crossed that he hasn't contracted yet another infection.

Weight (as of yesterday): 4.36kg
Milk Feed: 33ml per hour, abt 18 hrs of continuous feed daily. The target is 36ml/hr before we can take off the TPN

Speaking of weight, there was an upsetting episode with the NJ tube that made him lose some 16% of his weight within 3 days during the 1st week of Sep. As Ethan was still throwing up once or twice then, docs suggested to change his NG tube to an NJ tube. The diff is that the NJ tube goes beyond his stomach into his intestines, with the good intention that he will be less likely to vomit up his milk and medicines.

Unfortunately, 2 things: the process of inserting the NJ tube had him cried for at least an hour bcos they had to basically 'handle' him by turning him etc to get the tube to slip into the twisted intestines, which he didn't like; and somehow he doesn't agree with the tube at all, and continued throwing up, this time green bile. We told the docs the tube doesn't agree with him but they felt it was bcos of the increased milk feed that they are giving him that caused the vomitting, since past experiences with the NJ tube is usually favourable. We agreed to try cutting back the feeds and monitor the situation, but 3 days later, I returned from work, picked him up and realised how light he has become, and i could feel both his hip bones within my single palm. And he became rather weak and listless, very unlike his usual alert self when he is well. And he hasn't smiled for quite a while. That's when i really panicked. And finally we insisted that they pull out the NJ tube and go back to the NG tube. And you know what, he was fine after that.

We did another bone marrow aspiration last week and had fantastic news - it came back negative from the TB-group of germs. Finally. After more than 6 weeks of the anti-TB meds, we finally see progress. And we re-did a CT scan of his brain to check on the 2 lesions: the 1 near his brain stem can't be seen anymore, and the other has shrunk. The radiologist thinks that that is not an infection abscess but seems like some calcium-like formation. So it's good.

Side entry #1:
Russ and me brought Ashley out last Sun, our 1st outing with her after 4 months. She had a whale of a time. We were utterly exhausted. Have you tried chasing after a 17-mth active toddler who has just discovered walking/running and therefore isn't 100% stable on her feet and doesn't run in a straight line? I think the killer is that you are looking DOWN, while trying to follow the undulating route, with sudden brakes and sprints, that is the dizzying part. But i love it. We are going to do that again this Sunday, i hope.

Side entry #2:
I can't resist it, I must document this story Russ told me yesterday:
My MIL was in her kitchen doing her kitcheny stuff. She had a plate of 5 Shou Tao (longevity buns) on the table. Shortly after, she saw that there were 4. "Can't be, I had 5," she thought. And decided to go look for Ashley. She found her squeezed into the small corner between the sofa and the shoe cabinet in the living room. Ash looked back up at her. At first glance, Ash didn't seem to be eating anything. But then on closer inspection my MIL saw telltale black stains around her mouth. Further investigations found that Ash had her arms behind her, holding onto a Shou Tao. Now, how can a wee girl of not yet a year-and-a-half possibly tip-toed and stretched her way to reach the plate on the dining table, knows that she needs to find a secret hiding place to enjoy her find, and reckons that she better hide the evidence when her por-por comes looking for her? There's more... she had actually nibbled and dug her way into the sweet filling from UNDERNEATH the bun, so if you put it back in the plate, the bun looks untouched and whole.

Dad, mum, da gu, sis - thanks for watching Ethan while we were at work, I couldn't have continued working without you there taking care of him, and we wouldn't be able to spend so much precious time with Ashley if not for you. I know how terribly tiring it can be, especially when he is unwell and fussy. I really appreciate how you have temporarily put your life on hold for us, and i hope things will go back to a more normal state in a few months' time. It will take longer than that for Ethan to fully recover, but at least we hope he can go home 3-4 months after his transplant. The transplant WILL work, it must work.

And thank you, friends, relatives & colleagues for your well-wishes, prayers and kind words.

Sleep well Sweet.

DAY 84

They put in a long line today, under his left armpit.

And here's the good bit: I just saw his heart rate come down to the 109-120s range when he's asleep, and 130-140s when awake. It hasn't been this low for quite a long while. At the highest, we've seen his heart rate at 180s while awake and not crying, and really fast breathing. I feel breathless when I tried to follow his breathing pattern.
Hope this is a sign that he's doing better dealing with his infections and the anti-TB med is working after 3 weeks.

Weight: 4.27kg (yay! keep growing dopey!)

Was sorting through some photos and found some favourites.
Ashley at 11 months old:

My big Shrek...


...and my little Shrek:


Shrek ears courtesy of McDonald's KK Hospital

DAY 82

Ethan's doing well these few days.
He still has temp spikes daily for a short period, and his liver & spleen are still enlarged. But he seems quite comfortable and is pretty smiley.

Look, his roman sandals:




They took out his long line on Tue. It's been over a month since it was inserted, and was due to be removed lest it causes an infection. And they didn't want to put in a new line when he's still having fever. So we have to use plugs for his IV meds and nutrition. These plugs only last a day before the area starts to swell. Then the docs have to off the plug in question and set a new one. They finding it harder to find usable veins on the limbs.
I'm keeping my fingers crossed that there's no fever tomorrow so that they can put in a long line on Mon. And end the daily prickings.
I know Doc T will be thankful, for one. She must be stressed out whenever we insist for her to set plugs/draw blood, cos she's the only few we trust. No more incompetent house officers (or docs of any level for that matter) since the last blotched job. I'm still kicking myself for letting that HO attempt to set the plug. She's not going anywhere near my baby again with a needle.

Weight (Fri 17 Aug): 4.1kg

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!)