I wonder if I’m imagining the own importance of our story or tooting my own horn, so to speak, but as a walk around RCH for the umpteenth time, I think I should write about this again. I don’t know who will ever want to read it, maybe just me one day. But there is so much I forget already, and so much of a story to tell.
Just a thought in time and a kick from the universe to start writing once more. So here I am.
Today Harry has three appointments, he has a blood test, a PEG clinic check for his granulation tissue and a check in after his ED visit and finally, I am writing from the waiting room, or at least the hallway outside it, for his second covid vaccine.
He is bright and cheerful and cheekily trying to sneak away. The kid needs a run around. Given all the procedures he has had in this joint, and how often he has been burned, literally and figuratively, I don’t know how he doesn’t run and scream the moment he sets foot in here. It is the magic of Harry I suppose.
On the other hand, I do not need to run around.
Yesterday was egg collection number 5 for IVF. 14 eggs were collected, and I am sore. My insides feel like they’re about to fall out. I’m slightly sweating and to be honest I shouldn’t have done this trip to RCH today, but sometimes we don’t have a choice in these things. Rick is at work with important client meetings. And we need Ricks work.
But a lot of these appointments wait for no one, and IVF waits for even less. You go when you can go because every month is an egg lost.
Back to Harry.
First appointment - Blood Test
Harrys blood test run down:
When Harry was first discharged from his liver transplant (after a 60 day stay) we were getting bloods every 2 weeks. We now get them roughly every month which is a lot more manageable. These bloods can include all or some of the following[1]:
- Liver function test This tests the some of the enzymes that the liver is in charge of producing. They can be quite fickle against a cold or a bug, so if he is at all remotely sick we have to take the results with a grain of salt. But in saying that, if they are off, we must be careful. Because they can indicate transplant rejection. We have come to understand that Harrys levels are very sensitive to things such as ear infections, colds, even just dehydration.
- Full blood count A lot of people will understand this one, it looks at things like your red cell count, overall health of your cells. Can indicate things such as iron deficiency or it can indicate infection or cancer. But only when read in conjunction with other tests will you get a proper story. So this is a handy one to support Harrys liver test. As this test also indicates immunity, we have to take into consideration that Harrys immune system is supressed due to his liver transplant. So does not look as typical as others.
- Tacrolimus level Harry is on a medication called Tacrolimus. The majority of all transplant patients will be on this, it supresses the immune system, so the body accepts the transplanted organ as its own. It is an unusual drug, and would take someone much smarter than me to explain why it is so. But this blood test measures the level of Tacro that Harry has in his cells. It is important that this level is high enough that he avoids rejection, but not too high. Harry has had issues with this level before being too high. It has caused seizures in his case. It is also volatile, and a stomach bug can cause changes in the level in his cells even if the dose hasn’t changed. We have to test as close to a his normal dose time as possible, (and do the test before the dose is given) Harry gets this medication at 8am and 8pm, so this test gets done first thing in the morning at about 830am. It is also specalised test and not all facilities can perform it. Lucky we are close to RCH!
- Urea, Creatinine and Electrolytes
This is a kidney function check. There are a few reasons for this, mainly Harrys poor little body has been through a lot, so we keep an eye on it.
- CA, MG and Phosphate
Tacro can strip the body of Magnesium, we supplement Harry with magnesium every day. this checks to make sure we're keeping up with it.
He was pretty good today. A little whinge but no crying like he would have done months ago.
Harry has a number of other blood tests from time to time, depending on the reason for the tests. Sometimes we check his metabolic state, today we also participated in a research project. I agree to these projects if they don't add any procedures to Harrys list. In this case we were already collecting blood, so it was an easy yes. This research project is looking at Covid Vaccines in particular. Which is my next story!
Covid Shot # 2
Harry had covid shot number two today.
It's a very personal choice for us as a family, and I know there are so many different reasons on both sides of this camp. I'm not here to question anyone's decision. For us it was a weigh up of Harrys vulnerability and how bad things can get. We want to give him all the tools in the toolkit to avoid hospital. This is one tool for him.
In Australia, anyone over 5 can get the covid vaccine. Harry is under 5 but he comes under a special rule for those at risk.
He will receive at least 3 vaccines in total. Today was number 2. He was fine with his first one was I'm hopeful that this second one will be as smooth.
He was happy enough until I put him on my lap and cuddled him close, then the nurse lifted the arm of his t-shirt up. Then he started crying. But it was more a 'not this again' cry than a complete distraught cry. He's very brave my child.
Once it was in and done, he stopped crying, he got off my knee, gave me a look then sat back in his pram with his iPad until he decided I was in the good books again.
We had to hang around for 15 minutes after his vaccine, as this is the time that an adverse reaction is most likely to occur. No reaction for us and then we were off! Quick easy, and relatively drama free.
The research project we were involved with will take some post vaccine bloods off him in about a month and compare the pre and post. Comparing what exactly? Good question. When I've read through it I'll let you know.
The PEG lifeline
Our other appointment for the day was for his PEG (feeding tube).
Harry is still fed through this 100% of the time. The feeding journey has been a windy one for us.
There seem to be a lot of reasons why Harry isn't eating, and I am happy to expand on these in another post. Every time we make small gains (and I mean going from putting nothing in his mouth at all, to having a bite of a strawberry a day) something happens. And Harry has recently had a viral flu. Every time he gets sick, he is sick. And the smallest thing can set it off and he reverts back to not being able to be in the presence of food. He was very unwell last week. We had to call an ambulance at one point.
So anyway. His PEG is important. It is his literal lifeline.
Mostly it has been great. But when he was unwell recently, he was vomiting a lot, and Melbourne had some 38 degree days (and we don't have air-conditioning) and we think this caused an infection in his PEG. I went to ED for this last week as I knew it needed antibiotics. They are great in Emergency at Royal Children's, They recognise that a 'medical mum' will mostly know their child best.
This last appointment today was to check that everything was healing from the antibiotics and to discuss some bad granulation tissue that has formed around it. Granulation tissue in this case, is his bodies immune response to a foreign item, it would be great if it didn't think the PEG was foreign. But alas, it is. Harry has had a lot of issues with granulation tissue in the past. A longer story for another day. Granulation tissue is part of a healthy healing process normally.
Unfortunately, the only way to get rid of this unwanted tissue is surgery at this point. And even though it looks nasty, its not causing him too much discomfort. So we will leave for now. Another burden for Harry to carry. And another downside to something that keeps him alive.
Caring for medical complex children is more often than not swapping one problem for a lesser problem, not removing the problem all together.
Thank you for reading this far. I will endeavour to update more regularly. and please leave me comments of things you want to hear more about, Harrys history, Harrys Condition, Harrys Therapies, Harry interests, Melbourne, Mum Life, IVF, you tell me :)
To round off here are some things I am currently obsessing over
- The biggest and most important: my brothers upcoming wedding!
- Miley Cyrus's new song
- My Nespresso machine
Sending love x
[1] Remember I’m not a doctor, this is relevant for Harry and might not be relevant for you. Please check with a health professional in your own case.
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