Our Fighter Boy

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 from 5am onwards, i noticed that his HR is up to above 130. Didn’t think too much of it because he was crying and Azhar tended to him. By 7ish it was high 130s and hitting 150s when he cried. Checked his temp and it was up to 37.5. Gave him his morning feeds and a dose of panadol again. So far the temp has settled but his back to high HR  - 130 above and his breathrate is still at roughly 60/min. Which, i’m obviously not too happy about, especially since he is sleeping. sp02 is on the high 70s compared to last nights low 70s but at least once he was comfortable there was low 80s. For the past 6 hrs i’ve yet to see an 80.

Now we’re trying NOT to panic and observe him for another 48hrs starting frm last evening at 6pm. I’m hoping he’s cranky because of his teeth again. He’s had this before but not so tacchicardic.

Sigh. Given that he’s slotted for his cardiac cath in 2 weeks, i just hope he doesn’t have to go to KK any earlier. On the other hand, he DOES NOT have a BT shunt, so with him being tacchycardic, i’m a bit concerned about his PDA. I just pray that his heart stays strong.

Now that he’s not well, he’s starting to get real clingy and wants bodily touch. I seriously am not sure how he’s gonna be when we have procedures to be done.

Dear God, please let this boy continue to be a fighter and be the strong boy that he is.

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 the Cardiac Catherization to fully investigate further.

To be honest, we know that this step is the next step that Izhar needs to take to better his quality of life. Of course, he may have other surgeries pertaining to other issues that he has with his heart. The only thing that we hope for is that not too many issues come together at the same time.

As for now, the only thing that we can do is wait. The scheduled cardiac cath is in 8Jul, he has to be admitted on 7Jul. I just pray that he is healthy and doesn’t fall sick.

Till then, its just wait and see.

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 concern.

So. Lets start.

How is fighter boy doing right now?

Well, lets fill up the huge gap in the timeline.

Sept~Dec 09:

Izhar had the Mitral Valve repair done. We were pre-empted as to how serious and life-threatening the operation was going to be. We were asked if we really wanted to go through it and i still rememeber us getting really stressed out about the whole situation, yet, just affirming with our conscience that it was the best thing to do. During Izhar’s whole intubation period, we were never asked/allowed to hold him. And a day or two before the op, one of the Senior Staff nurse actually asked me if i wanted to hold him. I told Azhar, that that seemed like a sign that this was really major. But, by God’s grace, our boy came out of the op not only earlier than expected, but also more stable than expected. No open chest, he recovered in about a week, and his health, alhamdullilah, started to move up the graph.

In between due to his cardiac arrest, he actually had some seizures. Seizure meds were given during the 4 months but by the end of Nov, the seizure let up on its own. Thank God for that because it meant that his brain activity was stabalizing.

He was extubated in Nov, if i remember correctly, and that was a HUGE milestone. His pre-extubation days were so nerve-wrecking as the doctors, nurses and myself monitored his condition. All the staff who has been with us throughout this journey were as nervous as us and i’m sure everyone was praying that Izhar would be able to get off smoothly. The doctors intended to prep him on as normal breathing as they can get while he was on the machine, but. Just as he was doing VERY well, the machine, aka his best bud, was due for maintainance. He was then changed to another model and who would have thought? My dear son didn’t like the machine and just went on a downward spiral. As much as i suggested that the machine was the issue, no one took me seriously (cuz machines are all programmed to be the same) until almost 2 weeks later? Then one of our fav doctors actually agreed that we should change the machine back to the model that Izhar was used to.

Well. Lo and behold, he’s graph peaked again in less than 3 days and he was ready to be extubated. At last the day arrived and i remembered just being really nervous. Thankfully the whole procedure went smoothly. However, POST-extubation was another wave of emotions altogether. Praying that his lungs hold up well. Praying that his heart is able to handle the new stress. Praying that he just hangs on well. 48hrs later, my dear son did well enough on the C-pap machine and at last they could put his best pal away.

Days passed and he got stronger. His senses are getting better, his response was better. Apart from his Cortical Visual Impairment, he was improving by leaps and bounds. By end Dec, I actually got a call from PICU that said, “Izhar’s mummy? Izhar has just been shifted to the Children’s Step-Down Unit (CSDU).” It was like a wonderful xmas pressie :)

Jan~5 Mar 2010:

Ever since Izhar shifted to CSDU, he has continued to progress. Size wise he wasn’t comparable to kids his age, nor was he on par developmentally. But what was all that compared to him being out of PICU, off the breathing machine and all those wires poked into him?

He was growing again day by day, his character is coming out again, his strength was coming back… He’s back from where he left off. Amazingly, he had no more seizures. NO more seizure meds were given since he came to CSDU. Everything on the list were all his heart meds. Apart from that, he was also learning to eat pureed foods!

As his birthday approached, it dawned on us how time flies. Its almost A FULL YEAR that we’ve been in KK. I could still remember the day i gave birth to him and all that we went through in those early months as if it happened just yesterday.

4Feb2010 came and we had a birthday celebration in the ward. The nurses and social welfare staff were so nice to decor the place up for us. It was just sweet to know that they bothered. A birthday cake was bought and cut and the birthday boy seemed to know that it was his birthday! We noticed that he seemed to be extra happy and smily the day before and on the day itself! It was just so cute thinking back…

Well, we also got home leave to see how Izhar reacted to a new environment. In a way, i guess due to his CVI, he may have reacted to it better than we expected. So, we were due to leave mid-Feb when Izhar contracted gastroenititis. He vomitted and pooped quite a bit and only recovered almost end Feb. Post that incident, Izhar refused anything orally.

Well, that aside, once his diarrhea got better, the doctors asked if we were ready to bring him home! Reality kicked in and we realised that we had yet to set the room up for him. So after some clean up and moving of bedrooms, at last we were ready to bring him home. And it was such a nice date - 5 Mar 2010. It was a wonderful early birthday poresent for me, and thanks to his dietician, we realised that we were in KKH for exactly 1 year, 1 month and 1 day : 04022009~05032010.

6Mar~Present:

We were discharged with a C-pap machine and with instructions to get Izhar to use the machine. But my son has a mind of his own and 2-3weeks later, he decides that he is fine without it. We had his cardiac appointment and with their consent, Izhar has pretty much been off the c-pap for the past 3 months.

Our current issue with him is still oral feeding. In April he at last decides to eat and we could do about 30~50mls per feed. But now, for some reason he’s back to not being interested. So as much as we’d like to get him off the NG tube, it is still a necessity also for the fact that he still has quite a number of meds to take.

Izhar was hospitalised in mid-May due to broncholitis. We stayed for 11 days, more due to observation, but thankfully we got quite a lot out of it. We managed to get the Occupational Therapist, the Speech therapist and the Respiration doctor to come and see him. Three big areas that we were missing out on when he was hospitalised.

After we left, Izhar recovered well from that and its only recently that he has been developing a cough again. Thus far his chest sounds clear, so with FLUMICIL, i hope we keep his lungs clear from phleghm.

His global developmental delay is estimated to be 6-8mths from his current age of 16mths, which makes sense given that he was pretty much immobile since he was 2mths~10mths old. So now he is pretty much making up for things and therapies are his best bet now.

We just had his Neuro and Cardiac appointments 2-3days ago. Neuro is pretty happy with what they are seeing as his brain seems pretty stable and his CVI seems to be improving too. Cardiac did an echo and blood tests and on the day of consultation, dr say that he looks pretty stable that they will discuss if they should do anything to him anytime soon. Izhar’s next appointment for cardiac is in september and i’m supposed to receive a call in 1-2weeks should they decide that anything needs to be done. I just pray that they don’t call me and Izhar doesn’t go see them earlier than September.

Another happy note was that he has crossed the 8kg mark! it was our imagination when we felt that he was much heavier to carry already. XDDDD

On the overall, i’ve got a cheeky, happy, manja lil boy who cries bloody murder when he has a soiled diaper. Who also happens to love going out and KNOWS when we are about to go out coz he will be on his best behaviour ever. I believe he recognizes everyone in the family by voice and he seems to know what the ‘peak’ hours are when everyone is home. He also recognizes his once a week caretaker’s voices, his paternal grandparents whom he adores, especially his grandma.

He’s just a doll that both Azhar and i can’t get enough of and want to squish every single day. And dear God, i pray that we are able to do that for a loooooooooong time to come.

Insya’allah.

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 him. Doctors and nurses go about what they need to do around him and he’ll just observe what they are doing like he actually understands. When i read to him you can see how his eyes track the pictures, how he is actually following what i am pointing to. He reacts when i read his rhymes… He loves his toy mobile and would stare at mr fish, mr octupus and mr starfish. He loves it when i play his cycling game, and would ALWAYS smile and gurgle when i play that with him. also when i play itsy bitsy spider with him, he always has this adorable perplexed look on his face. When we read the duas to him, we know that he’s listening. and he’d almost always fall asleep once we’ve reached the end of all the duas. He has always had a a good grip and would hang on to our fingers tightly. Most importantly, one of the things that i miss most is that he KNOWS when i have arrived. If he’s sleeping he’ll always stir for a while and peek from one eye to check that mama is there. If he’s fully awake, he’ll normally start to cry or show a lil tantrum when he fully realises that i’m there - his “complaint” time… Now, post arrest, all the above has been erased. He doesn’t track or focus. He doesn’t grip. He doesn’t react even if we place/shake his to infront of him. When he is awake, he tends to stare blankly. Even when he looks at me, i don’t know if he actually recognizes me. When we talk to him, there is no particular response. Most times when he does a body reaction or so, is i believe due to natural body reaction. The one thing that he is very ”passionate” about now is sucking on my finger. I believe its because he is teething. Apart from that… we really have yet to see what we used to see in Izhar. I know we have not lost him yet… as Azhar puts it, “he’s just become another person. don’t worry, we still have him and his fighting hard”. yeah. i can try to comprehend that, but to face the reality that, the lil boy that had all that personality just… doesn’t seem to be there anymore. And speaking of fighting hard, we are hearing from not just one doctor how much of a fighter Izhar really is. Given his unique heart condition and all its medical issues, for him to survive TWO cardiac arrests is no mean feat. One thing that we keep hearing is that most babies would not have survived halfway, even then with a cardiac arrest, not to mention two. And with that, is the upcoming operation that he needs to go through. It seems that his AV mitral valve leakage is really severe and thus he has to go through the repair for that. Our initial plan was to have him put on more body mass before heading for surgery, but as he seems to more tacchycardic, it doesn’t seem like a good idea to hold it off longer. The pressures for his ventilation settings have increased over the weekend which indicate that his lungs are not holding up well. Given that this is a very major surgery, bigger than the previous two, this seems to be a make or break surgery. Given the state of his current health, how well he will do for this surgery is a big question. Some family members say no the op, let him be how he is right now, don’t let him suffer further. On the other hand, as parents, we feel that we won’t be doing the best for him if we don’t go ahead with this surgery. He has fought SO hard since birth, fought back from all his surgeries, fought back from 2 cardiac arrests… its really up to him further if he should want to further fight back with regards to his surgery. this upcoming surgery is definitely gonna be the scariest as we know that he may not survive the table. Izhar has been through too much but we don’t want to deny him any chances.even if he pulls through this surgery, there are also the other hanging issue that we have to look at - his neurological issues. There are still a lot of unknowns are another unknown would be how much is this upcoming surgery going to affect Izhar further. Regardless of all the unknowns, we just have to trudge on. Izhar’s the main player in this game and as long as it isn’t game over, us sidekicks have to fight on beside him. You go baby.

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 wasn’t any particular abnormality with regards the previous x-rays or echo.

On a brighter note, the afermath of things were not as great as the first arrest. The number of meds required to maintain his heart beat/blood pressure were not as much too. The boy was upset and looking really tired. Lips were purplish. At the end he was still able to settle down and go to sleep.

21Aug: Morning rounds by cardiac team. Team’s opinion is that he looks like how he was the morning of the 2nd cardiac arrest. Fine. Thus, now the worrying thing is WHY the 2nd arrest happened. One of the reasons may be that his heart has no more ‘reserves’. Its starting to get too stressed out from all that’s happening. What to do now is to wait and see. As there is still his fungal/bacteria infections pending for full clearance.

24Aug: Izhar seems to have settled down, but last 2 days he has been pretty cranky. His tongue keeps jutting out but when we give him the pacifier he just keeps pushing it out else just chews on it.

We do know that his cranky moments most times is when he needs to be suctioned due to secretions. The other would be due to a soiled diaper - this is another issue altogether as the skin around his anus is broken due to him pooing too much. Well, not that we’ve not had this problem before but still.

Anyways, since he wasn’t sucking on his pacifier, i decided to try and give him my finger. Alas, he immediately took to my finger and started chewing like no tomorrow. He especially bit down hard, when i massaged the molar areas. Sigh. I’m guessing the poor kid is teething.

The thing that the nurses and us parents worry about is how fast his breathing rate can get when he is upset. His normal rate at rest/sleep is high 40s-lows 50s/min. When he is agitated he can go up to high 70s, and that isn’t such a great number for a kid with weak lungs! Not only that he doesn’t sleep well unless aided by meds.

Post arrest, i do think that some of his habits have changed. And it is worrying trying to fgure out what make him comfortable without stressing him out too much.

That aside, one of the cardiologists came by to talk to us about the current plan for Izhar. Seems like the next operation that they are looking at is to repair his AV valve as the regurgitation issue not resolving. Why so because when they try to lower the pressures for the ventilator, he always starts breathing quickly showing signs that he is getting stressed out. Thus suggesting that the valve leakage is quite evident. And preventing them from extubating him.

On the other hand, i do strongly think that its coz they move too fast in term of lowering the pressures. One time they decreased his pressures by TWO points in TWO hours! And our dear Izhar has a history of “stress me out and i’ll stress you back”. When they decresed that, they had to up the pressures by THREE points to get him comfortable.

As of now, we are not too keen on having him to go through this op - even though we know that it may be for the best. But we do feel that he has been through too much and all we hope for is for him to put on a bit more body mass, as this next op is a VERY major operation.

This is the current situation per se. There are still certain things that we have yet to discuss thus we’ll have to see how things go.

In anycase, whatever plans that we have for Izhar, would all depend on what this lil fella wants to do.

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 seems to be a lil crankier. AND breathing faster. most likely due to the change in the secretions. its starting to get looser compared to the last few days, and as it gets looser its presence is more evident, and thus irritating the poor boy even more. Insha’allah the loose secretions are signs that the lung infection are getting better.

Thus far even though his eyes are open and he is more awake, he has yet to focus and track. Whether he is able to focus and track would very much be an indication of how far/bad the brain damage will be. Thus far things are still very much in the unknown and so we still have a long way to go.

Some good news though is that his arms and feet are still responsive. We still have yet to see if he’s able to sit up. The gangrene issue seems to be looking up. His hands and left feet are looking better but the right foot is still an issue. The tip of the last toe on the right foot is really black. We have no idea if its just dead skin or that whole tip is dead. The second toe is grayish and we’re still waiting to see if its gonna be black.

All in all, its still a game of patience.

We’ll see.

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 last toe. i’m just hoping that it doesn’t get infected. His ongoing fungal and bacteria infection cultures has thus far came back negative (2x!!), so i hope that he won’t be hit with another one. His system has been pumped with too much antibiotics… *shudder*

He still is not awake yet, even though morphine is running only at 0.4ml/hr. Its most likely due to the post trauma and he’s still gonna take time to wake up. On off he’ll open his eyes but he doesn’t seem to be focusing. The eye specialist is gonna come by tomorrow to see him.

on the brighter side, he has started coughing. of course the eye opening is an on/off event but he does do that. the hands move slightly at times, though we are still trying to see if it is a spontaneous reaction or he is really moving it at will. Apart frm that the ventilator settings are getting tailed down. Insha’allah he’ll prove that his lungs are still strong.

now. the one thing that has us all scratching our heads is this. given the fact that he had the cardic arrest… his heart is as of now, stable.

the miracle of God’s work.

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 stiffened up for a whole minute, before he went limp. Immediate resucitation was done. CPR, drugs to stimulate the heart, a code blue was called to get the anaethesist (sp) because they couldn’t set his line to run the drugs. it took an approximate 25-30mins before they managed to get a faint heart beat and his blood pressure. Even then, the lil one woke up at 330am and was reacting to us when we called out to him.

Next day things were not too great. We were told that we could lose him anytime and were told to inform family and friends. Also, the reason why this most likely happened was due to sepsis shock. As he had a fungul infection since 2 weeks back and it was in his blood stream.

Fast forward to today - 7 Aug.

Its almost a week since the incident. He made it through the last few days, but we were told to be prepared for things related to the long resucitation period. Namely - organ failure and severe brain dmage. His liver and kidneys pulled through though there is still damage. And today, a ct-scan was done to check on his brain function. Reason why this was proposed to be done was because he was showing signs of having fits the previous night. His tongue was twitching incessantly and he had a series of eyebrow twitching too.

Scan was done. Results came back. Izhar has suffered damage to both the frontal lobes as well as the cerebellum. There is also some bleeding which thus far should be able to recede on its own.

Apart from that, he has four toes on his right foot which after being assessed by the ortho doctor, has been diagnosed to be ‘dead’ - As quite a high dose was used to stimulate his blood pressure, this is the results of the side-effect of the medication that was used to stimulate his blood pressure.

And being ‘dead’, this may most likely mean that they have to remove them once he overcomes the current situation.

thus far. thats what we are understanding. now is for us to just observe and see how he does as he is still pretty much sleeping due to the medication given for the fits.

so. its literally - wait and see.