D'S DAY: GOOD
Dopey's in a good mood today. Very good boy, just lay there by himself and doze off, without fussing to be picked up. And he gave me a smile! :) Made my day.
Heart rate high when we came in this morning, and fluctuating quite a bit, jumping from high 170s to 183 even -- when he is simply awake and lying there without seeming agitated. Got us quite concerned. Doc took some blood (from plug, so no pricking) for testing to make sure all is fine. K level this morning normal.
Dopey had a bad Fri night, took a while to doze off and keep getting interrupted by staff for blood taking (his K level's low so need to monitor closely), feeding, temp checks, BP checks etc). So he had not much sleep. Poor thing, looked so tired so I held him in my arms nearly whole of Sat so that he can sleep in peace and really rest. If I were to leave him on the bed, he won't sleep for long and keeps getting startled. Very jumpy. Thankfully, he seemed to have rested enough as by evening, he was awake to enjoy his favourite show: that of the nurses changing his TPN tubes and taps. It's quite an elaborate procedure since it has to be done under sterile conditions and involves 2 or 3 nurses. He seems to be really interested and always lays there quietly (thay says a lot for someone who keeps wanting to be picked up) watching them, following their movements with his eyes wide open and neck stretched long.
Sunday, July 22, 2007
Friday, July 20, 2007
Just heard from doc PT, Ashley's HLA doesn't match... Am having mixed feelings... on 1 hand, that means Ethan will need to get an unrelated donor which also means risk of reject; on the other hand, we won't have to worry that Ash needs to go thru donating bone marrow (she's not at the min preferred weight of 10-12kg yet). And since Ash's doesn't match, daddy mummy's won't either...
DAY 54
D's DAY: GOOD (considerating his bath...)
Dopey had his 1st bath in ages this morning, thanks to favourite nurse G. All these days, all he has had were sponges, but finally today, he has the chance to wash his hair (well, what little hair he has anyway) :D He seemed to enjoyed his bath, which came as quite a surprise to me. Thought he would cry like he always does during his sponges. Good, we shall do this again tomorrow, shall we, darling dopey?
Another new experience is the visit by Speech Language therapist just now. No, Ethan is not learning to speak yet, despite what that title says. This is to assess and help with his bottling. Since he started retching about 2 weeks back, he has been refusing to feed orally, so we're trying to make him 'remember' that 'milk taste and sucking = full tummy', in case he gets too used to the NG tube feeding and forgets the natural way. Anyway, he's ultra sensitive to touch and complains when the therapist touches his face.
Weight: 3.37kg (slighlt up from last weigh, good!)
Puke: 0830am (it's that nasty-tasting multi-vits); 1230pm feed, quite a lot
Poo: 4 times since morning
Blood count: a bit low but doesn't need a transfusion for now
K level: 2.5 on yest's check (dropped again, sigh. It's all that apho's fault)
No fever today
Oh, and i finally bought a Kopitiam privilege card today. After accumulating a spend of $20, I shall be entitled to upgrade to a blue card that gives me 10% discount...
Dopey had his 1st bath in ages this morning, thanks to favourite nurse G. All these days, all he has had were sponges, but finally today, he has the chance to wash his hair (well, what little hair he has anyway) :D He seemed to enjoyed his bath, which came as quite a surprise to me. Thought he would cry like he always does during his sponges. Good, we shall do this again tomorrow, shall we, darling dopey?
Another new experience is the visit by Speech Language therapist just now. No, Ethan is not learning to speak yet, despite what that title says. This is to assess and help with his bottling. Since he started retching about 2 weeks back, he has been refusing to feed orally, so we're trying to make him 'remember' that 'milk taste and sucking = full tummy', in case he gets too used to the NG tube feeding and forgets the natural way. Anyway, he's ultra sensitive to touch and complains when the therapist touches his face.
Weight: 3.37kg (slighlt up from last weigh, good!)
Puke: 0830am (it's that nasty-tasting multi-vits); 1230pm feed, quite a lot
Poo: 4 times since morning
Blood count: a bit low but doesn't need a transfusion for now
K level: 2.5 on yest's check (dropped again, sigh. It's all that apho's fault)
No fever today
Oh, and i finally bought a Kopitiam privilege card today. After accumulating a spend of $20, I shall be entitled to upgrade to a blue card that gives me 10% discount...
Thursday, July 19, 2007
DAY 53
D's DAY: OK
Puked up his iron/multi-vs in the morning, so doc's agreed to take off the iron since he's now on TPN (installed late last night). Good thing abt the TPN is that he will get his nutrients and gain weight. Bad thing is the possible side effect on his liver. So they need to monitor his liver functions. He also puke up a little of his TB orange oral med. MO took some blood just now to test for: liver functions, blood cells (esp T-cells & platelets), & K-level. He's now on 30ml every 2-hr (still tubing, he doesn't want to suck), plus TPN. Otherwise, Dopey's bright and alert when awake, and knows how to use manipulative crying to get mummy to pick him up.
We know KK quite well by now, unfortunately. I don't wish to know KK this well, really. I don't wish to know 10 nurses by name, and more than double that by sight. I don't wish to have the need for daily visits by doctors from cardiac team, hema/oncology team, infectious diseases team, immunology and ward teams. I don't wish to be using terms like staphylococcus aureus, klebsiella bactereum, SCID, IVIG, cloxacillin, vancomycin, amphoteracin, fortum, gentamycin, TPN, O2 saturation level, t-cells, b-cells, tegaderm and coban with ease. Most of all, I don't wish to be familiar with the procedures of setting an IV plug or drawing blood, but having to hold Dopey's hand through those, hoping that the touch will reduce his fear a little, every few days or sometimes even a couple of times a day, how can I help not being somewhat knowledgeable about them? To date, it's Dopey's 53th day in this hospital. We've been around, literally, from CICU to High-D (Dependency) to General Ward 66, back to High-D, & now 62.
It started with Ethan getting a raging infection. By the time we got him to his PD, he was frightfully pale in the face with a greenish tint, his breathing was laboured, his belly was distended and swollen, and purple spots had appeared on his torso. The cocktail of antibiotics his PD pumped into him immediately got his infection under control, but the infection had also caused a collection of pus around his heart. This growing abcess was restricting his heart from pumping properly, thus it was critical that he undergoes an emergency cardiac surgery immediately. He had to be transferred to another hospital to do that, and the transfer is risky considering his extremely unstable condition. We were fortunate that the op happened quickly and well. We learnt later that his infection was caused by a bacteria called Staphylococcus Aureus. Other than the abcess, it was present in his blood and also has caused some cavities in his lungs. What followed was weeks of antibiotics and anti-fungi treatments (he also had a fungus infection), with periodic checks on his progress. Added to his sufferings was nappy rash that was so severe that his skin broke and there was even blood on his pampers. The pain must have been excruciating when we had to wash his bum with antiseptic wash, and even barrier cream & spray (Secura, Cavilon Cream, Cavilon Spray, Desitin - we've tried them all) must have stung. And we do this every so often since with his diarrhoea, he pooed so frequently. Different nurses offered different advice, what I found works for me ultimately for cleaning is using cotton buds and saline. And the quickest way to heal the bum is to air it. It's not as simple as it sounds, when Ethan was in pain and was only consoled when he was being carried, and is such a light sleeper and needed to be wrapped up snuckly, or sometimes he was finally asleep but it was late at night and exposing him could mean him catching a cold. Surprisingly, the one time when i succeeded in airing his butt for a good few hours was the one night we spent in the noisy 6-bedded General Ward with the fan loudly rotating overhead. And he had a better night's sleep there than in the aircon isolation room in Hi-D.
Just when we finally have a date of discharge and were looking forward to going home, a 2nd infection struck. This time it is a bacteria called Klebsiella Bacterium, another common bacteria. More antibiotics were added. The ulcer-like sore on his left buttock was also noted to have worsen. Turned out that this is his BCG vaccination site (given at birth). With all these infections occurring within such a short timespan, the docs have to chase up on whay's wrong with his immune system. Apparently what he has is very rare, not a clear-cut immunodeficiency case. And turned out that this specialised immunology field is very small, that there's a grand total of 3 specialists in Singapore. All are already consulted with on Ethan's case. Now the docs have narrowed it down to a suspected Zap-70 deficiency, under the Severe Combined ImmunoDeficiency (SCID) group. Tests have to be done in specialised lab in US/Toronto to confirm that, and we are now awaiting for that result. If confirmed a SCID, the only cure is a bone marrow transplant, and that is another long ordeal. In the interestof saving time, blood from Ash, daddy & mummy have been sent for matching on Monday. The blood collection from Ashley is another story altogether, which I may share another time...
Meanwhile, we continue to stay in 6227, Dopey's iso room...
Puked up his iron/multi-vs in the morning, so doc's agreed to take off the iron since he's now on TPN (installed late last night). Good thing abt the TPN is that he will get his nutrients and gain weight. Bad thing is the possible side effect on his liver. So they need to monitor his liver functions. He also puke up a little of his TB orange oral med. MO took some blood just now to test for: liver functions, blood cells (esp T-cells & platelets), & K-level. He's now on 30ml every 2-hr (still tubing, he doesn't want to suck), plus TPN. Otherwise, Dopey's bright and alert when awake, and knows how to use manipulative crying to get mummy to pick him up.
We know KK quite well by now, unfortunately. I don't wish to know KK this well, really. I don't wish to know 10 nurses by name, and more than double that by sight. I don't wish to have the need for daily visits by doctors from cardiac team, hema/oncology team, infectious diseases team, immunology and ward teams. I don't wish to be using terms like staphylococcus aureus, klebsiella bactereum, SCID, IVIG, cloxacillin, vancomycin, amphoteracin, fortum, gentamycin, TPN, O2 saturation level, t-cells, b-cells, tegaderm and coban with ease. Most of all, I don't wish to be familiar with the procedures of setting an IV plug or drawing blood, but having to hold Dopey's hand through those, hoping that the touch will reduce his fear a little, every few days or sometimes even a couple of times a day, how can I help not being somewhat knowledgeable about them? To date, it's Dopey's 53th day in this hospital. We've been around, literally, from CICU to High-D (Dependency) to General Ward 66, back to High-D, & now 62.
It started with Ethan getting a raging infection. By the time we got him to his PD, he was frightfully pale in the face with a greenish tint, his breathing was laboured, his belly was distended and swollen, and purple spots had appeared on his torso. The cocktail of antibiotics his PD pumped into him immediately got his infection under control, but the infection had also caused a collection of pus around his heart. This growing abcess was restricting his heart from pumping properly, thus it was critical that he undergoes an emergency cardiac surgery immediately. He had to be transferred to another hospital to do that, and the transfer is risky considering his extremely unstable condition. We were fortunate that the op happened quickly and well. We learnt later that his infection was caused by a bacteria called Staphylococcus Aureus. Other than the abcess, it was present in his blood and also has caused some cavities in his lungs. What followed was weeks of antibiotics and anti-fungi treatments (he also had a fungus infection), with periodic checks on his progress. Added to his sufferings was nappy rash that was so severe that his skin broke and there was even blood on his pampers. The pain must have been excruciating when we had to wash his bum with antiseptic wash, and even barrier cream & spray (Secura, Cavilon Cream, Cavilon Spray, Desitin - we've tried them all) must have stung. And we do this every so often since with his diarrhoea, he pooed so frequently. Different nurses offered different advice, what I found works for me ultimately for cleaning is using cotton buds and saline. And the quickest way to heal the bum is to air it. It's not as simple as it sounds, when Ethan was in pain and was only consoled when he was being carried, and is such a light sleeper and needed to be wrapped up snuckly, or sometimes he was finally asleep but it was late at night and exposing him could mean him catching a cold. Surprisingly, the one time when i succeeded in airing his butt for a good few hours was the one night we spent in the noisy 6-bedded General Ward with the fan loudly rotating overhead. And he had a better night's sleep there than in the aircon isolation room in Hi-D.
Just when we finally have a date of discharge and were looking forward to going home, a 2nd infection struck. This time it is a bacteria called Klebsiella Bacterium, another common bacteria. More antibiotics were added. The ulcer-like sore on his left buttock was also noted to have worsen. Turned out that this is his BCG vaccination site (given at birth). With all these infections occurring within such a short timespan, the docs have to chase up on whay's wrong with his immune system. Apparently what he has is very rare, not a clear-cut immunodeficiency case. And turned out that this specialised immunology field is very small, that there's a grand total of 3 specialists in Singapore. All are already consulted with on Ethan's case. Now the docs have narrowed it down to a suspected Zap-70 deficiency, under the Severe Combined ImmunoDeficiency (SCID) group. Tests have to be done in specialised lab in US/Toronto to confirm that, and we are now awaiting for that result. If confirmed a SCID, the only cure is a bone marrow transplant, and that is another long ordeal. In the interestof saving time, blood from Ash, daddy & mummy have been sent for matching on Monday. The blood collection from Ashley is another story altogether, which I may share another time...
Meanwhile, we continue to stay in 6227, Dopey's iso room...
Wednesday, July 18, 2007
DAY 52
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D'S DAY: OK
Dopey's having a rather quiet peaceful day today. Ran a low-grade fever earlier in the day which came down early afternoon, pooed twice (v greenish loose stools), feeding 20 ml every 2-hrly via tube and keeping them down except for the 4pm feed which includes the 2 new oral meds for TB. Yesterday's CT scan shows that his brain nodule has decreased slightly, lung nodules as well, no problems with the right neck, liver and spleen which we had concerns about. Positive news, but slightly disappointing as I was hoping to hear that the nodules have cleared up after two weeks of antibiotics. ID and Hema/Onco teams thus ordered some changes in meds Now he's on: IV Fortum, IV Amphoteracin, IV Amikacin, 2 TB orals, plus his daily iron and multi-vits. His left butt sore seems to have worsen, looks really painful - guess that's why docs ordered the TB meds. His 24-hr blood culture has shown negative for infections, hope it stays the same. Potassium (K) level: 2.8, will have another dose of KCI. Didn't have to hurt him except for a heel prick today to test for K level.
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