Our Fighter Boy

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.

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