Monday, April 1, 2013

April fool

A fellow blogger's child commented that April fool is so last season. That means not many will make the effort to pull pranks on others. The new in thing is Halloween. More and more are observing it in recent times with dress ups and trick-or treating.

Anyway today is still April fools day.

I was at the hospital for D's 6 monthly review. She did her bone mineral density(BMD) test just two weeks ago and we got the results today.

It's funny how time makes us forget. Previously I would be fretting in the run-up to her medical appointments. However, as the past few appointments were non-events, it must have made me let my guard down.

Well, there was absolutely no anxiety in the run up to today's appointment. I had expected a result that showed that everything was within range, as it had been for the past 3 annual BMD tests. You could say that I was sub-consciously optimistic. Furthermore, the hubs was on leave and was going for the appointment with me.

Well, as we walked into Prof's room, there was the usual formalities ~ greetings, handshakes, and the usual question of whether D has had any falls and how she was doing in school. Then he pulled out the results of her recent scan.

Hip scan - within range but at borderline and below the level of the last scan.
Spine - as above
Full body - below the acceptable range.

Then he dropped the bombshell - that she should start on her pamidronate infusions! That would mean she would have to spend 4 hour visits every 2 months for these intravenous infusions. He then went on to talk about whether to do it as an inpatient (meaning a check in to the hospital for the day) or as out patient, and the claim-ability from medisave for the different scenarios. And he mentioned that the side effect of the treatment would be a high fever, but only for the first time. Fevers of up to 40C was common with flu-like symptoms. Did I have any questions?

I was dumbstruck. My head was swirling. The infusions were not painful he said. Only the setting up of the cannula (drip thru the vein on the hand) would hurt. I thought that was an understatement. I remember my son being straight jacketed for that procedure when he had to be put on the drip during his hospital stay because they couldn't risk him struggling when they were doing it, and they locked me out of the room coz they knew it would hurt the mum too much to see them perform that procedure. And can you imagine my baby having to go thru that every other month for a whole year?

Prof must have seen me squirm, or felt my apprehension. He then decided to go gentle on me. He then said that if I wanted to wait and to do a re-scan in 6 months, he was willing to consider it.

All that happened within a span of about 5 minutes. But that 5 minutes was 5 minutes too long for me!

In fact, I was waiting for Prof to say: "April fool!! Gotcha!"

BUT unfortunately he didn't. It seemed like a bad april's fool joke gone wrong, but it isn't. I am still trying to awake from this nightmare.

Naturally, I wanted to wait. I was glad hubs was with me coz I was numb from what he told me.

I really never thought that she would have to go on pamidronate infusions. Especially since we have been told that she probably has the mildest form of OI.

Anyway, I re-googled pamidronate infusions to refresh my memory on what I read previously. Some studies have shown that it can cause kidney failure. The patient needs to drink lots to prevent the kidney problems. He didn't mention that at all to me. That's another area of concern for me as D doesn't drink much especially when she's in school. (Read: fear of the school toilet!!)

The infusions also cause bone pains, as well as depletion of calcium in the body. Something which I really don't understand. Usually weak and brittle bones are caused by lack of calcium. We are trying to strengthen the bones, but the process of doing it results in there being less calcium? This lay person just can't make sense of it. Anyway, I still have time to read up and find out more. Or to present my questions at the next visit.

Meanwhile the worrying begins again. Have to again constantly remind her about the need to be extra careful and to prevent falls. Any falls could result in fractures!! The paranoia is upon all of us AGAIN! Sigh. Tell me what can I do to shield my baby from that pain? Where can I take her to escape all these? Can time heal my baby?

Meanwhile, the poor girl seems oblivious to it all. Still happy-go-lucky, not understanding most of what transpired during the review today. Ignorance is bliss. Maybe I should go stick my head in the sand! :'(


Stardust said...


Was hoping you'll write 'April fool, gotcha!'

I can only imagine how you feel as a mother of your dear girl, and I'm so sorry to learn about this. Until the re-scan is done, be praying that things get sorted out, you know how great our Healer is!

Meanwhile, the little one should really be careful about her moves, so may the angels watch over her, Amen! Since nothing's decided yet, maybe she doesn't have to know what the treatment is like?

It's hard on you dear. Be thinking and praying for you and your loved ones. Stay strong!

bp said...

Hugs hugs my dear. Here to sit with you. Gotta try and cast our worries on Him, sooo much easier said than done I know, but let's try, yah. God be watching over D. Pray also for prof with his expertise and wisdom to know what's next and when is best for her. Jiayou mummy as you help D jiayou!