Our Fighter Boy

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.

blog comments powered by Disqus