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!)
Monday, August 20, 2007
Sunday, August 19, 2007
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Saturday, August 18, 2007
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:
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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
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:
.jpg)
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
Saturday, August 11, 2007
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!)
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!)
Friday, August 3, 2007
DAY 68
Dopey just went gai-gai today, to CT Scan his head, chest and abdominal. So he's in quite a good mood. Was playing and smiling with me a while ago, and has just fallen asleep.
He has really grown up during his stay in the hospital. From a newborn who cries at anything to a more 'knowing' baby -- he now communicates with his big big eyes, he pouts, he smiles, he grins, he says hello with a slight tilt of his head and makes the "tsneh" sound, he does the "i'm so poor thing why aren't you picking me up" sob, he knows when you are going to cause him pain or discomfort and he protests violently first by crying real loud, he scolds docs and nurses who prick him with the needle, sometimes he gets so angry that even after he has quieten down when you hold and rock him he still must get the last word in to make sure you know he's not happy about the situation -- you know when you watch movies, one of the production houses uses that lion that growls while circling its head? Dopey does that, but his version is a grouchy cub version -- tickling us to death rather than impose any fear.
Can't wait to see the scan results, hopefully there's some good news later when the doc comes around for the pm round. They also took lots of blood on Wed for tests. Heard yest that his infection markers are down, which is good. But need more time for the test results to come back. They topped up his blood too as his platelets are low. Yest, docs did the skin biopsy of 2 of the chest nodules and also extracted his bone marrow (from the left low leg) for testing. His condition has been quite the same these few days: temp will spike up about once daily; he'll vomit once or twice a day; they removed and then put back the TPN after his weight fell.
I informed docs about the 2 oval spots i spied in the centre of the left pupil, and they diagnosed them as scars. Suspect they are from infection rather than abrasion bcos of the even 'nice' shapes, but docs can't tell us the cause. One of the ovals is still 'open', so he's on antibiotic eyedrops to prevent it from worsening. He will also need long term drops to dilute his left pupil more so that his left vision is not blocked by the scars and cause lazy eye. He will also need regular eye checks till he's 8 or thereabouts. And he's likely to have astimagnism bcos his cornea is not smooth and even now.
Weight: 3.7kg (yay! that's an increase of 0.3kg from Mon)
He has really grown up during his stay in the hospital. From a newborn who cries at anything to a more 'knowing' baby -- he now communicates with his big big eyes, he pouts, he smiles, he grins, he says hello with a slight tilt of his head and makes the "tsneh" sound, he does the "i'm so poor thing why aren't you picking me up" sob, he knows when you are going to cause him pain or discomfort and he protests violently first by crying real loud, he scolds docs and nurses who prick him with the needle, sometimes he gets so angry that even after he has quieten down when you hold and rock him he still must get the last word in to make sure you know he's not happy about the situation -- you know when you watch movies, one of the production houses uses that lion that growls while circling its head? Dopey does that, but his version is a grouchy cub version -- tickling us to death rather than impose any fear.
Can't wait to see the scan results, hopefully there's some good news later when the doc comes around for the pm round. They also took lots of blood on Wed for tests. Heard yest that his infection markers are down, which is good. But need more time for the test results to come back. They topped up his blood too as his platelets are low. Yest, docs did the skin biopsy of 2 of the chest nodules and also extracted his bone marrow (from the left low leg) for testing. His condition has been quite the same these few days: temp will spike up about once daily; he'll vomit once or twice a day; they removed and then put back the TPN after his weight fell.
I informed docs about the 2 oval spots i spied in the centre of the left pupil, and they diagnosed them as scars. Suspect they are from infection rather than abrasion bcos of the even 'nice' shapes, but docs can't tell us the cause. One of the ovals is still 'open', so he's on antibiotic eyedrops to prevent it from worsening. He will also need long term drops to dilute his left pupil more so that his left vision is not blocked by the scars and cause lazy eye. He will also need regular eye checks till he's 8 or thereabouts. And he's likely to have astimagnism bcos his cornea is not smooth and even now.
Weight: 3.7kg (yay! that's an increase of 0.3kg from Mon)
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