Hormones

Nov12
by Jo Tann on November 12, 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 October 30, 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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New chapters and big milestones

Oct02
by Jo Tann on October 2, 2018 at 9:00 am
Posted In: Personal

The next chapter in our medical adventures started on Thursday the 13th of September with an appointment for Jenny with nurse Kate of the endocrine department. I was to be taught how to administer an injection of growth hormone, and to give the first shot under Kate’s expert guidance. Intellectually I didn’t have a problem with any part of the procedure, it’s straight-forward and relatively simple, but actually administering an injection to another person (particularly one I love to bits) was just a little confronting. However it did get easier, and the subsequent injections in the days following were much less fraught.
Growth hormone (GH) is administered in the evening before bed and as I was the one who had been trained, I had to instruct Phil before he could join in the fun. However Thursdays are my nights to head to yoga class, and since training in a hurry and then not supervising the result of said training seemed to both of us a poor idea, we decided to start Alex’s injections on Friday night instead.

Over the years, and particularly because of chemotherapy, Alex’s body has adopted the policy of ‘when in doubt, vomit’. Two days after starting him on GH, that’s exactly what he did. We, of course, rang WCH on Monday to let them know, and they decided that, given he had surgery scheduled on Thursday, to stop the treatment, let him get through the surgery and recover, then start again on a lower dose. The current theory is that his body was just adjusting to something new and went with the tried and true response, so resuming with a lower dose for a week will allow him to adjust more gradually to the hormone and – fingers crossed – lower the possibility of the traditional response.

On Thursday the 20th we headed in to WCH for part one of the cochlea implant surgeries. I managed to stuff everything needed for a one night stay into a backpack and we set off bright and early for DOSA. Driving along Kermode street past the hospital and Alex remarked on the snacks he would have post surgery. It was at that point I realised I had left the bag containing said snacks in the fridge at home.

I rang Phil in a mild state of panic – those snacks are part of Alex’s post surgery routine, and Alex is a boy who takes his routines VERY seriously! Disaster was looming, but Pete aka Grandpa, stepped in to save the day, dropping by the hospital to deliver the all important snacks.

Alex was the only child on the list, I’m not sure but I think his surgeon, the inestimable Dr Sonja, had added an extra surgery day to her schedule, just for him. So after the usual paperwork in DOSA we headed off to theatre, by 9.30 I had donned the outrageously fashionable gown and cap that only the most stylish of people who want admittance to a surgical theatre get to wear, and by 9.45 we had all sung the rainbow song, with a special guest artist – Dr Rowan came by specially just to see Alex and sing the rainbow song.

One of the main concerns with these surgeries is Alex’s ability to heal. Irradiated tissue is in general slower to heal, and with this in mind Dr Sonja and her team went very delicately about their work, taking extra care to try an minimise the trauma to Alex’s ear, and ended up spending 3 hours or so operating where they would usually only take 2.
At 1pm I got called into recovery to discover a very sleepy but chilled out little man. They had given him morphine at the end of the procedure and it engendered one of the most relaxed wake ups from anaesthesia that I’ve ever witnessed. He came out of the anaesthesia and very politely asked for his headband, when he encountered the bandage on his head he did try to remove it, however when we said no and stopped him he just sighed and stopped pulling at it. Normally he’d dig his heels in and we’d have a grumpy fight on our hands while we physically stopped him taking it off for 10 minutes, so it was a very odd experience to say the least.
The downside of the morphine was that it made him very very sleepy for the next 4 hours or so until it wore off, and while he was sleepy and not moving his O2 sats – the saturation of oxygen in his blood – were quite low, dropping to the high 80’s and low 90’s. The nurses set up a mask for him and while he kept it on or near his face, having the O2 wafting did bring up his levels, but as soon as he moved it away they dropped again. As the morphine wore off his levels rose gradually, but he was monitored fairly closely overnight, and fortunately they rose high enough that we were allowed to go home the next day.

Dr Sonja had come to speak with me while Alex was still in recovery, she said the surgery had gone well, there had been quite a lot of skin in his ear canal which is unusual, so she’s planning to keep a close eye on his left ear in the future.
The operation removed 2 of the 3 bones, the tattered remnants of his eardrum and quite a lot of “gunk”. Dr Sonja told me that the middle bone of the 3 had actually started to die (something I wasn’t aware was even a possibility!) but seeing the look of horror on my face hastened to assure me that in this particular case it was actually a good thing. Separating the second and third bones can sometimes cause damage to the third bone which is left in the ear, but because the second bone was dying it came away from the third bone easily and caused no damage. The best news of all was that the auditory nerve appears to be completely fine, so the implant should work perfectly.
Touch wood!

We made it home on Friday around 11am and Alex promptly went to sleep on the couch, waking at 2.30 when Grandma and Grandpa came to visit so I could collect Jenny from school without having to make Alex come along!

In the days following I had expected Alex to have noticeably less hearing than prior to the surgery, but in fact we have seen very little difference. The BAHA unit (bone anchored hearing aid) is doing a terrific job, Alex recently had an upgrade and now has a more powerful unit attached to a very stylish band which has jungle animals on it.

Alex is due to start his GH treatment on Tuesday, given he’s been exposed to the procedure we are hopeful it will go smoothly. Jenny has been amazing, now she’s used to the routine she is quite calm. We carefully explained every step of what we were doing to her so it wasn’t scary, and she has paid close enough attention that now (under supervision of course!) she is cleaning the surface of the ‘pen’ we use to give the injections and attaching the needles to it.

We see Dr Sonja again on Thursday, and will hopefully get a date for the second surgery then, most likely in a month or so, but we have a more important date in our calendar before then – Alex’s 9th birthday!
We have never forgotten the horror of being told Alex most likely wouldn’t make it to his 4th birthday, so we celebrate each and every birthday with great joy. This year also marks 5 and a half years post diagnosis which is an amazing milestone.

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