Thursday, May 31, 2018

Story of Ning #13

It was trying time for the wife, as I was ill - the thing with my health is, I'm usually pretty 'resistant' but once infected, my system fails rapidly - fever, cough, flu, sore throat combo in one go. And it takes a really long time to fully recover, even with medications. I had to be masked all the time around baby Ning and slept in a separate room (was a blessing in disguise lols).

It was a week of trial and error for us and baby Ning, as we switched milk powder due to her poo poo being too watery, amend her feeding style, amount and schedule, manage her sleeping hours and duration, regulate room temperature and quality by switching between air conditioning, fan and air purifier, adjust then readjust her nasal tubes for oxygen feed, just to list a few. All for the comfort of baby Ning and we finally understood the concerns raised by nurses prior to her discharge. 


April 19 :: It was baby Ning's first follow up session with the PD post discharge, expected a long wait even with specifically timed (ten in the morning) appointment, hence we were well prepared. I suppose that's the norm for famous/well known medical practitioners here, like, we're always more than welcomed to consult others if impatient. 

Fortunately for us, baby Ning slept through most of the wait. Unfortunately for us, we were carrying her, then there were lots of sick but active kids moving around and I accidentally bumped her head (noob me) onto the chair's wooden arm rest, sigh - no one but myself to blame for being such a klutz.

It was almost 4 hours later that we finally met the PD and after a simple procedural check (with his attention/mind elsewhere), he sent us to a different room and had a nurse monitor baby Ning's breathing pattern, under normal condition and during feeding for about 20 minutes, then presented the readings to the PD. Eventually, she returned and conveyed that baby Ning no longer need to be dependent on the oxygen feed. 

I was overwhelmed with relief and the wife was in tears because to us, this piece of news meant baby Ning has finally recovered after such a long battle. 

But that was quickly overshadowed by doubts and uncertainties as my logic kicked in. Considering all the precautions and prevention we had to take during baby Ning's admission and discharge (as advised by dear PD) AND... with this simple, almost lackluster check and monitoring, everything is now fine and dandy and we can go home. 

Like really? The PD didn't even meet us up post monitoring (we did ask the nurse who clarified with the PD it wasn't necessary), no further checks, no precautionary measures, no advise on dos and don'ts, no nothing. And the next follow up consultation was in a months time.    

In all honesty, I wasn't confident but with not much options available, we (okay, mostly me) reluctantly headed home and continued monitoring baby Ning closely. That night, upon discussion, we decided to reattach her to the oxygen feed due to concern of not able to monitor her during sleep (too soon) then removed it the following day.     


April 20 :: By late evening, we notice baby Ning starting to breath rapidly and deeply again - so we did what we had to and resumed her the oxygen feed. It was a short lived joy and now we felt lost on what's the right approach to take now? Like, how do we really know if she's actually ready to be taken off this dependence, considering we were advised so by the PD. We dropped him a message seeking for advise, but he was travelling so it was only much later when we got a reply, and it was to resume the oxygen feed and for us to schedule a follow up appointment with him. Bah!

Then and there, we decided to re-consult our doctor (back in the initial hospital, whom we kept in touch with) for further advise and alternative. To be honest, at this point, I've lost all confidence on the PD, even though he maybe well known to have successfully handled many complex cases but didn't seem to me like he knows what he's doing with baby Ning, other than continuously giving me false hope. 

The doctor immediately hooked us up with one of her vendors for equipment rental (who drove to our house on a Sunday, helped setup and provided KT, then charged us only RM 1 as rental fees as he was made aware of our prior hospitalization charges, we couldn't be more grateful) then set an appointment with us to further understand and monitor baby Ning's latest condition.  


April 26 :: Appointment with doctor and we didn't get the news we were hoping for, as baby Ning was diagnosed not ready to be taken off the oxygen feed. She suggested for us to consult with a pediatric lung specialist in UMSC and also to try the medication approach (steroids basically) to strengthen her lungs, which she advised is a common approach/practice and is safe as the dosage is minimal. 

Our initial hesitation due to our persistence for baby Ning to naturally recover as she grew and not wanting to 'introduce' her body to new and additional chemical substances, waned at this point of time and we eventually relented to try - partly due to the infinite length provided by the PD, the initial weeks estimation turned to months then years during our last consultation with him.

The medication was for ten days, to be fed orally via syringe, twice daily, with each of the four courses containing lesser percentage as it progresses and the only difference we noticed would be her hunger pangs, which got more frequent. Hopefully, baby Ning won't grow up to be as fat as me *laughs


With renewed hope, we continued monitoring her progress and restarted our quest for a nanny, one nearer to our current home and preferably, one on one - there goes another few hundred bucks in forfeited deposits. 

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