Last week, Lil Z was admitted to the Royal Children’s Hospital for her osteopenia (fragile bones) treatment.
The endocrinology team had decided to begin her on Pamidronate, a bisphosphonate drug that works by (according to Google) reducing normal and abnormal bone loss, which helps to maintain strength. It does this (according to the doctor) by acting as a kind of ‘calcium magnet’ that draws greater amounts of calcium into the bones.
Although Pamidronate has some scary potential side effects – and technically isn’t registered for use in children – it was a pretty easy decision to make. After three leg fractures in two years, we needed to do something. Because Lil Z is non-verbal and has a different pain threshold than most people, it is surprisingly difficult to detect when she has a fracture – and even more so to convince the doctors at And if we couldn’t bring the fractures under control, we were going to have to start limiting Lil Z’s activities, which would mean curbing her opportunity to develop. So, it was full speed ahead for the treatment. And when I say full speed ahead, I do mean it. I’ve never seen a hospital move so quickly on something! (although I have to admit, this did make me a bit nervous…).
So, Lil Z was admitted on a Monday. We were admitted through the 23-hour (day procedure) ward. One of my demands was that because Lil Z has very difficult veins, I wanted her sedated before the put in the intravenous cannula. I’ve had too many horrible experiences where Lil Z is held down by two or three people (usually including myself) while someone pokes around the back of her hand, inside of her wrist, elbow, and foot trying to find a vein. I wasn’t going to put her through that again unless I had to. Fortunately, the doctors were happy to agree to put her under – I suspect they don’t enjoy the process of trying to put an IV into a screaming, writhing child any more than I do.
We’re regular visitors to the 23-hour ward and it is usually sooooooooooooooooo sloooooooooooow. The general procedure is that we check in at reception, wait half an hour, get sent to the 23-hour ward, wait an hour, get checked in by a nurse, wait an hour or more, get sent down to the operating theatre, wait another half hour, and then I carry her into the theatre, give her a kiss, hold her hand while they put her to sleep, and am then hustled out while they get started on the procedure. I had just settled in for a long wait on the ward when a nurse rushed up and said they were ready for us in theatre. Apparently they decided to do Lil Z first, before they got stuck into the procedures for that day. So, we hurried through our admission and less than 45 minutes after we arrived at the hospital, I was being bustled out of theatre. A totally new experience.
It didn’t take too long to put in the IV and then Lil Z and I were sent to Robertson Ward to get settled in and await the arrival of the Pamidronate infusion. We waited. And waited. All day.
Late in the afternoon, the Pamidronate nurse (yes, there is apparently one dedicated to this treatment) turned up and said Lil Z needed to have a blood test before the treatment could begin. One of the most common side effects of the drug is that it pulls all the calcium out of the blood and into the bones, leaving the blood depleted of calcium. So, before they started, they wanted to make sure her calcium levels weren’t low.
The plan had been to do blood draws from the cannula, but the nurse tried and couldn’t get any. She didn’t want to collapse the vein before the infusion, so tried to find another vein, without success. Then she did a heel prick and squeezed some blood into a vial for the test. Unfortunately, it clotted before it arrived at the lab and couldn’t be tested.
Finally, the Endocrinology registrar tried and managed to find a vein in the back of Z’s hand. It wasn’t a pleasant process, with a nurse and me holding a screaming Lil Z still while she did it. The poor registrar was nearly in tears when she’d finished, gave Lil Z a hug, and kept apologising to her over and over again. I just wanted to hug the doctor because we could finally run the test – instead of sticking needles into Lil Z.
The test came back fine and we started the treatment shortly before dinnertime. It took 3 hours for the infusion and during that time she was “specialed”, which meant a nurse was constantly at her bedside to watch for any side effects. Miss Z was happy to roll in the bed and we read a chapter of Winnie the Pooh together. By the time the infusion was finished, Lil Z was ready for bed. She didn’t seem to be experiencing any side effects and was generally a happy little girl.
Unfortunately, that all changed when we were woken by a nurse at 6am, telling us that it was time for Lil Z to have her next blood test. I suggested that she try from the cannula again, but the nurse looked at me dubiously and said she didn’t want to risk the IV. I explained the IV was for the infusion, which had happened, and that the plan now was to try to get blood samples from it. But the nurse insisted the doctor wanted the IV preserved, and tried to get blood from her arm, which achieved nothing except giving Z another bruise and making her scream so loudly that she woke up all her roommates. The nurse shuffled off, to be replaced by a junior doctor, who had similar results. And another doctor, who tried a finger prick, which resulted in blood (and less screaming) but it again clotted before it reached the lab. Another nurse tried to get blood from the cannula, but wasn’t successful. Finally the Endocrinology consultant arrived and said they were giving up on the 12-hour blood test, but would instead get the phlebotimists to take blood when they were on the ward in the afternoon.
Not helped by an awful start to the day, Miss Z was decidedly under the weather. She had a fever and refused to do much except sleep. Flu-like symptoms are another side effect of Pamidronate, so this wasn’t too alarming. Miss Z slept and I read a book on my iPad.
In the afternoon the phlebotimist arrived and informed me that she was only allowed to draw blood from Z’s inner elbow. She strapped a tourniquet on Lil Z and waited for a vein to appear. None did. She swapped the tourniquet to the other arm and after a lot of tightening and thumping her arm, managed to find a vein. A nurse and I held Lil Z while she poked a needle around trying to find it, but with no luck.
That afternoon, our au pair and Vegemite arrived for a visit. There were several girls in our room around Vegemite’s age and she joined them in some games they were playing with some Wonder Factory volunteers. I slipped out to take a shower while the au pair had some cuddle time with the poorly Miss Z.
When I returned, the au pair said that the Endocrinology registrar (the one who had successfully taken blood the previous day) had managed to get a blood sample by taking out the cannula and catching the blood that came out afterwards. It was a bit horrifying, but better than more attempts with a needle, and at least Lil Z would be free from tests until the next morning.
On the morning of day 3, I was ready to take a hard-line on the blood tests. I wasn’t about to let Lil Z go through another day of being poked repeatedly by people “trying” to find a vein.
Fortunately, the first person to see Lil Z was the Endocrinology registrar. Since she was the only person in the whole hospital who had been successful in getting blood, I let her try again. And, she was successful. The blood was taken off to the lab and came back quite quickly as having a normal calcium level. We celebrated and Lil Z was given the all clear to go home.
Never have you seen anyone so happy to be home as Lil Z. It was pure joy. I don’t think you can blame her to be relieved to be out of the hospital – I know that I certainly was.
So, now we have three months before the next treatment. Fortunately, side effects are much less likely for subsequent treatments, so although she’ll still be put under for the IV, the infusion will be a day treatment and there will be considerably fewer blood tests involved.
I have no idea how we know if the treatment worked. I suspect they will follow-up with us in due course, as Lil Z will need regular X-rays and renal ultrasound scans. For now, however, it is comforting to know that her bones are just that little bit stronger, and that perhaps we can stop worrying quite so much about another fracture.