I thought kids were supposed to be teenagers before they started giving their parents issues to which their parents could sigh, roll their eyes, and say ‘hormones’. I guess Alex is just getting an early start.

On Saturday we gave Alex the last dose of ondansetron in the bottle. On Sunday (November 4th) he vomited blood again.
Family outing to the Women’s and Children’s!
We came into WCH at around 4pm and were taken straight through for an assessment, we gave a detailed history of the events of the past few weeks, with a short recap of the last 6 years, to nurse Katie, and then to Dr Lauren and while the doctors were discussing him he vomited blood again. Ondansetron was immediately given and he settled down a bit. Jenny was having fun exploring all the equipment in ED, stealing nurses pens and making beautiful drawings for the nurses whose pens she had pinched 🙂 The decision was made to check his shunt so off to imaging we went. Jenny was over the moon, as she got to have a ride on the bed with Alex! For the first time ever Alex had a CT scan with no sedation, and what’s more, with minimal fuss! He was also really good for the X-rays, both of which showed his shunt was just fine – no blockages or cracks.

Since oncology have officially decided that we no longer need to be a patient of theirs (YAY!) we have been handed over to general medicine. Only problem is that, despite the referral for the hand over having been done quite some time ago, we only recently received an appointment time for our handover meeting, and it has been scheduled for January. Since it we weren’t about to wait around until then gen med were summoned – enter the lovely Dr Bree who had the fun job of going through with me Alex’s case history in a hurry! Since we all had better things to do that wait around while she read through 10 manilla folders I gave her the TLDR version of the last 6 years, and she gave me her initial best guess for a diagnosis – gastritis.

It was rapidly sneaking up on 7.30pm by this point and it was becoming clear that Alex wasn’t going home that evening. Since Phil had work and Jenny had school the next day they headed home (After Jenny had written a letter to her favourite nurse ‘To nurse Brooke I love you love Jenny’). By 9pm it had been decided that a canula was needed, and the wonderful nurses Claire and Ange managed to get that done, it wasn’t fun because by this time Alex was a bit grumpy and a lot tired, but they were amazing and it eventually was in and wrapped. Blood was taken, and it showed a extremely low blood sugar level – 1.8 – so they tried to get him to drink some carbotest. He, much like everyone else who has ever been presented with the stuff, was not a fan. We persevered for a while but in the end they hooked him up to a bag of potassium & saline. (carbotest is a glucose drink, which, surprisingly since it’s full of sugar, tastes utterly revolting)
I had expected to end up in Newland or Campbell wards – short stay wards, usually post surgical patients – but instead at 11.30pm we were wheeled up to Cassia ward.

This was awesome.

The beds in Cassia are the long lounge type of bed (rather than the single couch chair which folds out from under the seat to make a bed) and are all private rooms. Handover and obs were done by 11.50pm, and I made my bed and fell into it!

The next day the lovely Doctors Sophie, Nilarni and David (all from general medicine) came to visit. Unfortunately they didn’t have a clear idea of what was wrong, however endocrine and gastroenterology doctors were coming to consult, and would hopefully have some insights into the problem.

Endocrine visited, Doctors Kate and Jan. Alex’s Thyroid levels had dropped, they were borderline before he started the GH treatment, but now are officially low and requiring medication. As his thyroid levels were low they needed to check his cortisol levels too, when treating hormonal imbalances the hormones in question have to be treated in a certain order – cortisol is first, then thyroid, then growth hormone. GH increases a patient’s metabolic rate and as a consequence it can show up other problems as it does so, which it had here. Thyroid medication is also a metabolic stimulator, so it could further exacerbate the problem, so it’s important to check his cortisol levels before starting any treatment for thyroid, and Alex’s GH injections were suspended until all the test results came in.

Low cortisol levels could possibly cause nausea, but Gastroenterology were still organised to come and visit.

Tuesday morning blood was taken early to check both blood sugar and cortisol levels, with the results hopefully within 24 hours. Alex managed to keep a bit of breakfast down and seemed to perk up a bit. After lunch of two hotdogs we headed to the play room for a bit, and in the middle of playing with some lego, completely out of the blue Alex had one of his little episodes. The episode itself was the same as all of the previous ones, but unexpected as the others had only ever happened when he was ill with a cold or virus. It was a reasonably severe episode, he couldn’t stand unaided and had slurred speech for 5 minutes or so afterwards. He had a 20 minute nap afterwards and, once he’d got over the grumpies, was back to his old self.

Dr Sarah from gastroenterology came to visit at 3.30, she said that since there was no blood in Alex’s stool that it was not an ulcer, but probably a tear in his lower oesophagus, which had been reopened with the vomiting on Sunday. If a tear is in a position where it’s exposed to acid from the stomach it heals slowly, which is why he had blood in his vomit two weeks after we initially saw blood. So he is now on omiprozol – an antacid – and ondansetron to stop any vomiting which might reopen the tear, for about two weeks.

Cortisol test results came back, cortisol was low but frustratingly just inside normal range, it wasn’t conclusive since cortisol levels fluctuate. Therefore we have to have another test in the morning – a cortisol stimulator drug goes in and then blood is drawn at 30 minutes and 60 minutes to check the cortisol levels.

On Wednesday the cortisol test started at 10.45. Alex’s canula was being tricky, it had to be in one exact spot to work, Alex was not happy to start with, and he didn’t appreciate being held at odd angles to try and get the canula to work. At one point we thought we’d have to put a new one in, but nurse Kate tried again with Alex sitting on my lap and she managed to find the sweet spot. Blood was taken first as a baseline, then the stimulator drug was given, then blood was drawn again at 30 and 60 minutes. Alex had some lunch then we set about getting out of the hospital, it’s always a process which takes longer than you think it should, but eventually the canula was out and we had the ok to go. We had to stop by the endocrine department to collect a script for thyroxine, and then to the hospital pharmacy to pick up the omiprozole and ondansetron and then freeeeeeedoooooooommm!

Since we had all gone in together on Sunday, and Phil had gone home again, I didn’t have a car with me at the hospital. Since Phil was at work, our wonderful and amazing friend Tamika collected us from the hospital and drove us home. We made it home with just enough time to drop the bags inside and to jump in my car to get Jenny from school and take her to her ballet class.

Dr Jan called on Thursday, Alex’s cortisol levels showed a response to the drug in the test and were at appropriate levels, so we are just treating the thyroid deficiency for now. The problem is that his cortisol levels could have been ok because Alex hadn’t been on GH for a few days, so we are giving just the thyroxin for a week and seeing how he responds. If he still has problems with not wanting to eat or vomiting then we will collect a blood glucose monitor (the same as diabetics use) on Thursday, and check his blood glucose levels every morning. Blood glucose levels are linked to cortisol levels, they rise and fall in tandem, so in essence to measure one is to measure the other, at least in a home environment. If the levels are low then we will probably have to do the cortisol test again to officially confirm his levels.

Thursday is our 6 week post surgery check up with Dr Sonja, and hopefully we will get a confirmed date for the next surgery.

Alex and I would like to thank:

Dr Lauren, Nurses Claire, Katie, Brooke and Ange in ED
Dr Bree the Gen Med registrar
Drs David, Sophie, & Nilarni from General Medicine
Drs Jan & Kate and Nurse Kate from Endocrine
Nurses Sue, Karen, Maddie, Raj, Mina, Sharna, Ebony, Tina, and Kelly from Cassia ward
Dr Sarah from Gastroenterology
and the play therapist on Cassia ward, Georgia,
all of whom gave us wonderful care and attention while we were at WCH.