A slight hiccough…

Nov29
by Jo Tann on 29/11/2018 at 1:13 pm
Posted In: Personal, Uncategorized

We’ve made jokes from time to time about how Alex seems to get sick on or around significant dates and anniversaries… Well Phil and I just celebrated our 13th wedding anniversary

Guess what happened.

In his defence, this time it was a problem which had been somewhat foreseen, so we were able to resolve it via phone calls to WCH rather than a visit.

 

About 2 weeks ago after a delightful stay in our home away from home we were sent home with prescriptions for a thyroid medication and a cortisol medication. The results of the tests they had performed seemed to show that Alex’s cortisol levels and response was ok, so we had instruction to just start on the thyroid medication.

 

Things went well for around a week and a half, then Alex started to not want to eat again. We persevered, but on Monday 26th he started vomiting. Phil got a call from school to please come and get him, which he did (a big thank you to his amazing boss’ Deb and Maria). Since we had been aware this might be a problem the endocrine nurse Kate had given us a blood glucose tester – just like the ones diabetics use – because measuring blood glucose level (BGL) gives you a reasonable measure of your cortisol level, since the two correspond with each other.

 

If your blood sugar is low, typically you will feel sleepy and grumpy, and boy oh boy was Alex typical!
A “normal” BGL is in the range of 3 to 5. When we got Alex home on Monday his BGL was 1.8. We rang the hospital and spoke to Kate, she prescribed an immediate infusion of sugary liquid 🙂 We convinced Alex to have some ginger ale and in fairly short order was able to get him up to 5.6, with an immediate improvement of his mood.

 

After a few phone calls from nurse Kate and Dr Jan it was decided to just start him on the cortisol medication, as it was overwhelmingly likely to be the problem.

 

It is now, as I type, Thursday, and after only three and a half days on the new medicine Alex is like a different boy. Hopping off his taxi bus,  home from school on Tuesday, he asked for a snack! He played with his Lego rather than curling up on the couch. He was happy and cheerful, and wouldn’t stop talking!
Today was the same.

 

I don’t want to jinx it, but we are starting to see the usual effects of growth hormone, and honestly it’s amazing.

 

So, fingers crossed that the hormonal balancing act stays balanced, and that there aren’t more hiccups looming, it would be nice to have another normal Christmas!

 

With a bit of luck we won’t have anything more to blog about before the festive season, so we would like to wish you all a safe and joyous Christmas and a happy and healthy New Year.
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Hormones

Nov12
by Jo Tann on 12/11/2018 at 8:00 am
Posted In: Personal

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.

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A Unique Individual

Oct30
by Jo Tann on 30/10/2018 at 8:20 am
Posted In: Personal

Two weeks after surgery Alex started back on the growth hormone (GH) injections at the reduced dose of .3 of a ml daily, since he seemed to be sensitive to GH the endocrine team decided that it would be better to have him on this reduced dose for 2 weeks rather than just one. He was, and is, very good with the injections but as the first week progressed we noticed he was starting to get less and less willing to eat.

Those of you who have been following along with us for a while will recall that after his radiation therapy ended and he came off the steroids, his appetite did a nosedive to the point where he required a nasogastric tube. We persevered with him and gradually he did get better, to the point where recently he was eating what was for dinner quite happily and was accepting of a wide variety of meals.

You’ll note the past tense in that sentence.

On Tuesday the dose went back up to .55 of a ml daily (in relative terms still a very small dose) and he became even more resistant to eating, until on Friday evening he started vomiting. Not something new for him so we kept an eye on him but didn’t panic, but decided that a call to endocrine on Monday was warranted. Monday came and Alex headed to school, I dropped Jenny off to her school and then rang the lovely Nurse Kate in the endocrine department. She was a bit concerned and said she would consult with Dr Jan and get back to me. Before she did however I got a phone call from Alex’s school – he had been vomiting, and there was blood in the bowl.
Never a good phone call to get really.
Alex’s school is amazing and wonderful but it is for me, even on a good run, an hour’s drive away. So I do what we all do when faced with a crisis – I called my mum!
She was on her way to a carer’s meeting and was able to divert to SASVI (only a 20 minute drive for her), collect Alex and take him to her carer’s meeting. This was just off Fullarton road, so it was quicker and closer for me to reach and we were on our way to WCH much faster.
Thanks Mum, you’re awesome xx.

I had called Kate back and let her know we were coming in, so with Alex on board I headed for the women’s and children’s hospital. again.
The little heroes foundation were amazing and gave us the use of one of their carparks, so I didn’t have the added stress of having to move the car every few hours, and we made our way into the emergency department.
Because of his history, and complicated present, Alex gets the VIP treatment when we have to go into ED, so after a few questions at the front desk we were transferred into a booth out the back.
Unfortunately because of his complicated present, none of the doctors were sure what exactly was causing the continual vomiting. The three main suspects were the GH, his left ear, as it was infected again, or his shunt malfunctioning.
The shunt was easily ruled out – when pressed it felt normal, not tight or hard, so it was working properly. But it was impossible to tell which of the other two was to blame, or even if it was one of the other two – a stomach bug of some sort could be causing all the havoc.
The doctor thought it was unlikely that his ear was to blame – it was starting to clear up thanks to some eardrops – but then also that it was extremely unlikely for GH to cause this reaction.

When you start taking growth hormone usually two things happen fairly quickly, your energy levels increase and so does your appetite. For Alex it seems to have caused – along with the vomiting – more lethargy and a sharp decrease in appetite. No one is sure quite why this should be so, but because he’s got so much going on he’s a complex case – what the hospital doctors call ‘a unique individual’.
There’s two things which commonly cause vomiting while taking GH: 1) the body getting used to the drug, in which case you back off on the dose and then gradually bring it back up, which we have done, or 2) increased inter-cranial pressure, which Alex can’t get thanks to his VP shunt.
Alex managed to keep down a cup of milk while we were there, so, as no one seemed to have a definite answer, we ended up getting some ondansetron from the hospital pharmacy to control the nausea and stop the vomiting and went home.
We have (with consultation from endocrine) stayed at the higher dose and while the ondansetron has helped control the vomiting Alex is still not back to eating properly. He’ll only eat melty cheese or sausage rolls, when two weeks before starting GH he was doing really well and eating most things at a reasonable speed. It seems easy to point at the GH and say it’s all the drug’s fault, but GH simply isn’t meant to have this effect, and as he’s severely GH deficient he really needs to take it regardless. So on we will go.

In better news, we had our follow up appointment with Dr Sonja, she was really happy with how he’s healing, but, in consultation with her colleagues, has decided that the second part of the operation needs to wait a few extra weeks. Alex had ear infections for a very long time so everything in his middle ear was inflamed beyond what was usual. It was decided that a few extra weeks of healing would, in the end, produce a better result, so we have a tentative date now for January 23rd. The really good news is that Dr Sonja did all the prep work during the first operation, so the installation of the implant should only take her 30 minutes or so!

So we will take the good, the vomiting has stopped (touch wood), he is starting to be willing to eat a little again, we have a date for surgery, and in the best news of all, we have a new niece! My sister welcomed her second baby, the adorable Hazel Elizabeth.

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