What my 10 year old feels about her infusion

I came across this whilst I was spring cleaning. Brings a tear to my eye. But I guess that's what she's truly feels about what she has to go thru every 2 months and how she copes with it.

One year later

My now-not-so-little one has completed one full year of pamidronate infusions. This brave warrior has had the cannula inserted half a dozen times without squirm nor tears.

Mum is so proud of you D!!

Her BMD has improved, but not sufficient for her to go off it yet. As such, she will still be continuing with these infusions. Fortunately, apart from the severe abdominal pains she gets after her infusions, she has not suffered any other side effects to her kidney, liver or bladder. We have also finally managed to time her oral meds after her infusions so that her pains are managed. 

It appears to be a very slow process to increasing bone density. But shoulder on we will, To stronger bones! 

8 weeks

8 weeks have gone by since D's first pamidronate infusion

She is due for her next one end of this week.

Not sure how her bones have strengthened since the last infusion. We wouldn't know for sure until she takes her next bone mineral density test and my guess is that it wont be done until October, a year from her last.

But on the Vitamin D front, she is still Vit D deficient.

She has been on Vit D supplements (2000 IUs a day) for close to 3 months and yet there is no improvement.

Vitamin D is a group of fat-soluble secosteroids responsible for enhancin intestinal absorption of calcium phosphate (Source: Wikipedia)

They are not sure why even with the supplements she is still deficient. However, they are unwilling to increase her supplementary intake ... yet ...for fear of toxicity.

So it means that she will have to take an additional blood test in 3 months just for Vitamin D levels.

My little trouper hates taking blood tests.

She has no problems nor fear when they insert the cannula.







But complains when they draw blood!! They are like vampires, she complains. Why do they need two vials just to test for VItamin D, she wants to know. I have no idea!!

She insists on the "magic cream: for the procedure. This cream numbs her hand so she doesnt feel any pain. But the funny thing is, doesnt it hurt more to insert the cannula? For that she doesnt need the cream!!

I really dont understand why. With the cream, we end up spending at least an additional half an hour at the hospital, waiting for it to take effect. With the cream, I end up paying more.

I just want to get it done and over with, and get out of that place as fast as I can.

But, I give in to her. ... just to let her have some control over the situation she is in. Hopefully it makes her feel better about the whole situation she is in.

The first hurdle

For those of you who are following my daughter's medical condition, we have crossed the first hurdle.

She has had her first pamidronate infusion last week and will be doing it every two months.

It went as expected:

* not covered by the insurers as it is congential - such a bummer this is!!

* she had the fever - but thank God it didnt go too high. 8 hours after the procedure she still hadnt had any fever and we were rejoicing until the doc told us that it will only come on after 24 hours. Sure enough, it did. But luckily it hit a peak of 39C and then it came down over a two day period.

* her bones ached for days after.

* no nausea, allergies. Praise the Lord!!

* she is not drinking as much as she should. I now worry when the procedure is done during the school term as there will not be anyone monitoring her fluid intake!


The unexpected were:

* she didnt cry when the  cannula was inserted. So proud of her. Such a brave girl.

* her pulse rate dropped mid-way during the procedure, and they were really concerned about it. They did get it up back to normal when they realised it.

* she lost her appetite for food for a few days. Eating half her usual :(

* one of her tooth fell out  mid-way during the infusion!

* she was in high spirits despite everything!!


The disappointments:

* the insistence of the hospital on my child being wheelchaired around for her kidney and bladder scans. My child is well and capable of walking. We wasted an hour just waiting for the porter to come get her and then wheel her back.

* the late start of the procedure. It didnt start until 7.30pm when she was admitted at 3pm. As the procedure took 4 hours in total, the poor girl was totally tired out at the end of it, as she was not really able to rest despite it being administered intravenously  as she was constantly montiored. Every half  to an hour there was someone coming in to check her for bruising, allegies, blood pressure, pulse rate, temperature, etc.

* Not being able to sleep even after the procedure as she was still being constantly monitored. They were taking her temperature, blood pressure and pulse rate all through the night. And even I couldnt sleep as every time they came into the room, they insisted on checking with me whether she had drunk any water and if she had gone to ease herself.

* the error of the pharmacist on duty in the supplements given whilst in the hospital!!

* the long time it takes for them to dispense medications for us to take home with us. 4 hours??? I would have waited a much shorter time had they allowed me to go to the hospital pharmacy to collect it on my own!!

* The huge BILL!!!


What I was happy with about the whole thing

* Prof was more chatty and forthcoming with information as compared to when we were in his clinic. My guess is that he has too many patients to see during his clinic consultation hours and all he wants is to get them out the door!!

* the nurses were really attentive and took good care of my child.

* I was given an orientation of where I was to go for her future visits, which fortunately will not involve a hospital stay!!

This is going to be something we have to do for many years to come!!

Fear

We had another doctor's appointment just this week.

The other professor who takes care of my daughter's medical condition is back after her long leave of absence.

Somehow when I speak to her, I feel more comforted about what my daughter has to go through.

It may be her excellent bedside manners. Or maybe because she is more convincing and thorough in the way she explains things to me. Maybe she just just knows how to get her point across to this emotional woman! Or maybe I was just in a better frame of mind. 

I asked her one question. Not only did she address that question, she went beyond. She answered all the other questions I hadnt asked yet. She also went on to answer some questions that didn't even cross my mind. She even painted different what if situations. She did not tell me the right course of action to take.  She told me to go home and think about it. 

But given what she has told me, it seems like I have no choice but to go with their recommendations.

At the end of the day, deep down I know they are recommending the best course of action. But there is still that fear.  Fear of the down-time every two months.  Fear of the pain she has to go through. Fear of any complications that may arise. Fear of the side effects. Fear of the astronomical medical bills. Fear of the unknown. And of course, fear that I took too long to make this decision.

But what is fear?

It looks like its time for me to face it and pray that she will rise. I have to remind myself that: fear has a large shadow but is actually very small. 

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! :'(

Cant help but feel cheated

When D did her BMD (bone mineral density) test last year, the results had shown such improvement from the previous borderline one that we celebrated over it.
At that time I asked the Prof who was monitoring her if she would still have to do it on an annual basis. His reply then was that because it was so good, we could afford to wait a little longer before the next test.

At our last appointment he decided that he wanted her to do it again this year, exactly 12 months after her last one. I cant help but feel SOOOOO cheated. It's not the cost of doing it that matters,(though it would be good if it could be subsidised) but I feel that he is just not keeping to his word of being able to wait a longer while before the having to do it again ... and that he is just ordering it done to compile his statistics.

Guess, he doesnt realise the anxiety everyone in the family faces every time a test is due. What will the result be like? What will happen if it is below or is at the borderline level? Will she be forced to undergo pamidronate infusions? Missing school to get the test done is another bugbear!

Another professor had told me previously that BMD levels can fluctuate from time to time. And what if the test is done at a time when its at its lower than her average. Would it not then result in a course of action that may not be necessary?

Well, that time is near again. So you know how I am feeling ....