June 2010
4 posts
5 tags
Sick Day 1 & 2
Izhar’s temp spiked to 37.2 yesterday evening. Gave him 2 doses of panadol @ 6pm and 12am and he was settled throughout the night. One thing that concerns me is that he is quite tacchicardic. But i’m putting that through him being very cranky throughout the day and he was crying quite a bit. By 2 am though he looked fairly comfortable and breathrate is down to 40/min.
This morning...
2 tags
3 tags
The Intermediate
Have received THE call earlier than expected.
So it seems that they have discussed about Izhar’s latest echodiagram last friday during the weekly cardiac conference. And, it has been affirmed that they are considering for Izhar to proceed with the intermediate stage, the BCPC (Bidirectional CavoPulmonary Connection). However, before they confirm if they should do it now, they will be doing...
Post #101 - Really long post
9months and 10days since the last post and we’ve crossed into year 2010.
100 posts have past and this is post number 101.
How time flies.
For those who do follow/followed this blog, i sincerely apologize for not updating. I’ll try my best to update as often as possible to those who do bother to read and are concerned about my fighter boy. With all my heart, i THANK YOU for the...
September 2009
1 post
trepidation
its been a month since Izhar had his first cardiac arrest and 2 weeks since the second attack. there has been an obvious change in his behaviour and characteristics.
Izhar used to be very observant and responsive. Talk to him and he’d look at you like he really understands what you are saying and is giving you his fullest attention. He’s always had an interest in things around...
August 2009
5 posts
4 tags
Arrest #2
20Aug: Izhar had a 2nd cardiac arrest. alhamdullilah it didn’t last as long as the last (15mins), alhamdulillah when it happened, a doctor who knows him was there and CPR was activated immmediately. However, even though resuscitation was carried out immediately, there is no doubt that yet again, his brain is affected. X-rays was done, heart echodiagram was done. Results was that there...
post cardiac arrest day #15
Izhar’s getting more awake. He’s off the morphine already so he actually should be more awake…
Our little fighter did night shift the last two nights with the evening nurse. Slept thoughout the day and so was more awake at night. The nurses are saying he’s currently on US time. Hopefully he’ll be back to local time in the upcoming days…
Anyways, today he...
post cardiac arrest day #12
Izhar still has a lot of secretions. Thick and yellowish, indicating that he has a lung infection. Thus far he is being proned (placed on tummy) on a 6hrly basis. And it does help with getting the nasty secretion out.
His toes are still not looking that great. The right foot is still pretty swollen and reddish. Last night i noticed that he has a little cut on the fourth toe from the nail on his...
post cardiac arrest day #6
Izhar’s not in a great state.
the past two months have been a ride. but on 1 Aug, saturday at 930pm, we have unknowingly got on an absolutely tumultous roller-coaster ride. and til now, we are still unsure of where the ending point will be.
1 Aug. 930pm.
Izhar had a cardiac arrest.
We were there when it happened. And it happened in an instant. His big eyes were wide open and his body...
June 2009
2 posts
post-op #2: d16
Izhar’s 4 mths old today. I’d gratedful to the Almighty that he is with us for this long… and has put up such a great fight.
We are facing another obstacle now. He is currently having an infection due to the long-term intubation. O2 sats were unstable yesterday and after rectifying things step by step, they ended up with putting him back on the prostaglandin and upping the O2...
post-op #2: d13
its almost 2 weeks since Izhar’s 2nd op.
week 1 had us all on toes as they couldn’t close his chest as his heart was too swollen due to the operation. also, things were very stormy as his body is still trying to adjust to the new ‘pumping system’.
as he had the BCPC done, thus the PDA has to be closed. as the heart is normally not able to withstand pressures from both...
May 2009
1 post
post-op #1: csdu day 37
day 36 - my baby isn’t doing too great today. saw me once he woke up and wanted to be carried. however, he was still cranky and angry even when carried - which does not usually happen. he normally falls asleep pretty quickly. not only that, i noticed that he’s breathing is harder and heavier than usual off the c-pap. when i followed his breathing pattern, i was literally panting. not...
April 2009
10 posts
post-op #1: csdu day 34
day 33 - a ‘longline’ was inserted. a longline is a thin threadlike line that goes through the vein in the arm. the line is able to last a good 4-6 weeks compared to the IV line that can only last a few days. as Izhar requires the postagladin til the next upcoming operation, thus the decision to have the long line inserted. however, the long line occulated (was blocked) more than 3...
post op #1: csdu day 31
its de 31st day that izhar’s in the csdu. We came in early, at 10am as Azhar was in de afternoon shift and won’t be able to see Izhar after work.
When we came in, de curtains were drawn. We thought they were going to suction him so we went for breakfast. Only when we came back did we realise that they were actually putting in de iv lines (aka plugs) for him. And, there were TWO. One...
post-op #1: CSDU day 28
My lil hero has gained weight! he’s put on 400g over the month and is at 4kg! hurrah Izhar! also, i think he’s starting to get used to the c-pap again, because these past two days he has been able to fall asleep pretty quickly after feeding.
secretions wise there’s not much of it but its thick. also, he tends to have ‘plugs’ - accumulated secretions, a lot like snot...
5 tags
post-op #1: CSDU day 25
Izhar’s looking comfy today, albeit the fact that he’s really good at shaking his head and having the c-pap prongs off him. anyways, he was sleeping when i came by, after a while he started crying. i thought he was having nightmares and tried to pat him back to sleep, but he continued crying and it sounded like a, “i want to be carried!” cry, so i did as requested and true enough, he stopped...
post-op #1: CSDU day 24
After 8days off the c-pap (9-16Apr), on nasal prongs for 3 days (17-19Apr) - where his oxygen was increased gradually from 0.5-0.8litres, Izhar is now back on the c-pap and 1litre of oxygen.
As usual our lil hero is not too happy with the foreign object on his face. he skillfully shook off the nasal prongs and had to go through us putting it back on him again while he cried showing how annoyed he...
post-op #1: CSDU day 20
Izhar’s thus far still doing pretty ok. however they put him on o.5l of oxygen. fortunately the nasal prongs are softer and seems more comfortable than those of the c-pap. even then, the little man still hates it and was a cranky one the whole of yesterday.
he’s benchmark while on oxygen is to be above 70%. our dear boy has his moods. and an interesting habit seems to be happening....
post-op #1: CSDU day 17
we just received another news.
izhar’s gotta go for his next surgery soon - for the bt shunt. his pda is showing signs of closing still of the same size but it seems to be too small for him as he is growing bigger. thus, his O2 sats have been dropping from high 70s to high 60s. it went down to as low as 58% at one moment. that was when i was there with him.
though it isn’t...
post-op #1: CSDU day 14
its been 2 weeks post-op. thus far the lil fighter is doing great. gave us a scare however, he had arrythimia - tachycardia; his heartbeat went up to 230bpm. thing is, he just came out of sleep and didn’t appear distressed. his bp was a normal high 50s and his O2 was a high 70s to mid 80s. he was crying quite a bit and i thought it was because he was distressed. the doctors came, did an ecg...
March 2009
9 posts
post-op #1: day 16/CSDU day 1
went down to see our lil hero in the morning and were told that our boy is well enough to leave the ICU and be sent to the Childrens’ Step Down Unit (CSDU) - the recovery ward for cardiac kids. as the room was pretty full (they can only take 8 kids at one time), Izhar had to wait for an empty slot.
thankfully, around 4pm, we got a call from the CICU and were informed that our lil boy has...
post-op #1: day 14
Izhar’s looking better today.
Met the doctors twice.
Afternoon rounds - the doctors say he doesn’t look too breatheless in comparison to the last 2 days. The reasons why he may be having this condition may be due to 3 things:
his PDA is getting bigger
a leaky valve &
the veins that were repaired may have narrowed
right now the docs are giving him medications and are...
post-op #1 - day 13
apart from the fact that its Izhar’s 13th day in recovery… he’s also into his 7th week! gosh. how time flies eh? my sayang’s 7wks old already. :)
updates: happened to bump into the doctors when i arrived yesterday. seems like Izhar’s taking a bit more effort to breathe and it was due to the pockets in his left lung closing up due to the secretions. although a...
6 tags
post-op #1 : day 12
its almost a week since Izhar’s first surgery. he’s so far doing pretty well. he was extubated yesterday and is on the c-pap. poor baby had to fast before and after they extubated him - reason being to prevent him from vomitting, and in case he chokes on the vomit. but i think he did pretty all right. he got a lil cranky at times but mostly he was pretty adjusted.
on the other hand,...
“All things are difficult before they are easy.”
– Thomas Fuller
post-op #1 : day 7
its been a week since Izhar was pushed into the operating theatre.
thus far he’s been doing great. even then, he’s still having some issues here and there. he’s potassium level is on the low side, he isn’t digesting his milk well yet; he still has quite an amount of septum in his lungs - there’s a therapist to help with the suction… apart from that on the...
post-op #1 : day 2
After 6hrs, inclusive of pre & post op preperations, Izhar is safely out of the operating theatre. We are still within the 24hr period to see how he is doing but thus far, the doctors say that he’s doing pretty well. The poor fella is poked with all sorts of tubings its just heartwrenching to see. Over the next few days, its to see how the post-op fluids are draining out from his body....
on the quest for a better quality of life
we have reached the major starting point of Izhar’s fight…
we met with his cardiologst last wednesday and were told that the surgery will be slotted earlier - either this week or next. but as days passed and its already a week, we thought that most likely they’d only be looking at surgery next week. but. my boy decides to take things in his own hands and this evening, his O2...
here we go again...
my dear boy is on the c-pap again, as well as had a blood transfusion. call it a mother’s instinct but after seeing him on sunday, i suspected that the doctors will look at putting him on the c-pap again as his O2 stats were not very encouraging. not only that, he also seemed to be using a lot more effort to breath.
however, even though his O2 stats were below 80%, he didn’t look very...
February 2009
25 posts
peaceful days
its been a peaceful few days.
Izhar’s off his c-pap - yay! for that and he has been extremely comfortable. the only concern as off now is his weight. he hasn’t been putting on enough weight, its been a ‘downward trend’ as per the doctor’s concern. so now they are going to add a scoop of formula to mummy’s milk. as depressing as that sounds, its all for his own...
oh happy day!
yup. it was a happy happy 2hrs for azhar and i today. *wide grin* and we had a very lovely nurse on duty too.
Izhar was wide awake when we arrived, which was at 730pm. i guess he was waiting for us to turn up. stayed awake all the way til his next feeding time, which was at 845pm.
anyways, highlights highlights!
they took off the IV that was used for the blood transfusion XD
his assisted O2...
sleepy sleepy
the lil boy was asleep throughout the whole time we were there. well. not 100% in lala land… he was irritated about 15mins upon our arrival. reason? it was poop time. he was on his side the whole time and he demanded to be moved onto his back, after crying a while more due to the tummyache, he calmed down once he farted and was on his business. it always tickles us when he does this....
he's comfortable
went to see my sayang in the afternoon.
alhamdullilah there were colour to his cheeks, and he looks so much more comfortable in comparison to the last 2 days or so. there are no more blood transfers but they did have to do a blood test.
his heartrate was pretty stable, and his O2 level was above 80%. the good news was that his breathing wasn’t as rapid as the last two days, however that...
pending
went to see him twice today.
afternoon visit - could go by and see him in the afternoon because i had the appt with my obgyn. except for the c-pap, he was pretty much looking fine, excpet that he did look a bit pale. just thought that it was due to him being exhausted from all the things thats been going on the last few days. he was a bit cranky… but anyone would be with the irritating mask...
tap tap tap
went to see Izhar in the afternoon… and they had him on the c-pap again. sigh… my poor boy.
he was asleep when i got there but i guess he knew that mummy’s here so he started crying hard - complaining to me how uncomfortable he was. he only calmed down after i carried him… in any case, its not all bad news. the 48hr blood culture resulted in no signs of bacteria so he was...
comfort
Izhar was much MUCH better this evening. He was off the c-pap mask since morning and was breathing on his own fine. Heartbeat has settled to about 150bpm and his O2 has stabalised to above 80%. Alhamdullilah…
As there was no signs of infection, they are taking him off the Penicillin and putting him back on the Amoxycilin. I’m hoping to see the IV off his little hand when i see him...
whew
whew.
Izhar looked better today. they took off the c-pap at 10am and he was a happy kid all the way. he maintained his O2 level to be above 80%, and was actually having a stable heartbeat rate and O2 level while sleeping. they only got a little erratic when Azhar and I got there. think he was excited and his little heart got a little overworked the whole time we were there.
His recent habit is...
one of the bad days
just came back from seeing Izhar.
his blood platelet count went up to 938,000 and they are suspecting that he may be having an infection. as of now, we have to wait 48hrs for the results of his blood culture. the earliest would be wednesday night, else it’ll be on thursday.
apart from amoxicilin, they are now giving him penicillin too but via an IV tube.
my heart just ached seeing him...
the first feeling of fear
went to see Izhar this evening. we were looking forward to holding him if he was awake, and at most parts looking forward to just seeing him. upon arrival, the standard procedure was to wash your hands before touching the babies at NICU.
after washing my hands, i noticed that there was something poking out from his face. the thing that came to mind was, “C-pap?” we were informed on...
no kinks
Izhar was wide awake when we saw him.
The nurse had just finished cleaning him up and changing him. He was in his own world as usual when we came up to him. After playing with him for a while, the neonatal doctor came by to talk to us about the results of his Barium Meal Test.
As expected, his does have some form of malrotation of the intestines; however, as per what the doctor mentioned, there...
patience
its been a week since Izhar’s birth and thus far, he has been able to breath unassisted which means his heart has been performing fairly up to standard. alhamdullilah.
thus far, we’re still waiting for his cardiologists to get back to us with regards to his surgery. my guess is that they are still keeping him under observation to ensure that his heart is fit enough, if/when they...
