I haven't written a post for quite a while. Partly because Bree also has a Facebook page (https://www.facebook.com/pages/Beautiful-Bree-Our-Journey-with-Cerebral-Palsy/283083005057101) for updates on her health and general goings on, but mostly because I haven't particularly felt the need to say very much.
Lately though everything has been playing on my mind and I feel if I don't share it I might not be able to handle the next thing that comes our way.
So this is what you may have missed
Bree started having blue episodes at the end of May, these lasted less than a minute, but were a concern as she wasn't breathing during this time and was visibly distressed, they started occurring quite frequently.
She also had been having recurrent chest infections and pneumonia for 14 months.
In early June, after some tests, scans and observations it was determined that the blue spells were caused by laryngospasms (the larynx was tightening) and the ongoing chest issues were due to aspiration (foreign objects such as food and saliva falling into the airways and lungs). The main reason behind this is Bree's poor swallow, however a change in medications helped solve both of these problems by reducing the amount of excess secretions which could accidentally enter the airways.
Due to the aspiration risk Bree is now Nil By Mouth, this means that she can only be fed via her PEG (tube straight to her stomach) and the long term prognosis is that she will never feed by mouth (we disagree, but time will tell).
An EEG (a scan used to detect and monitor epileptic activity) showed that Bree's Infantile Spasms (a form of Epilepsy which only affects children under the age of 2) were no longer present. This meant that her seizure medications could be changed and one was ceased immediately.
Bree turned 2!!
The seizure drug that had been ceased in June was a med that also works as a muscle relaxant. Without it in her system she started showing huge improvements physically including improved head and trunk control (essential to sitting, standing and well... everything). However her temperament was not so good. Was it pain, discomfort, irritability, anxiety or did she just want hugs? Regardless of what had caused it we had to assume that it was a reaction from coming off the medication. We also had to trial a new seizure med as even though Bree should have outgrown her original form of Epilepsy this doesn't leave her in the clear and often a harder to treat, different presentation of seizures can develop.
That brings us to...
A week after trialing a new seizure med we decided that the side effects far outweighed any benefits, Bree was not sleeping for days at a time, not even a catnap. She was even more irritable than before.
As she was on a small dose of this new drug and it did not appear to be needed it was ceased (on doctor's orders) immediately.
Two nights later we were actually discussing that perhaps Bree had outgrown her Epilepsy, it is rare, but possible with her condition. We were talking about how good things were going and how if we could make her less grisly that life was pretty good...
Three hours later I watched her little body twitching as she chewed her lip and stared at me blankly.
Bree had a seizure which went to status (needs a special medication (called a recovery drug) to make it end). After an hour it was finally stopped, but the drug that was used is a heavy muscle relaxant and one of the risks associated with it's use is that it can cause respiratory failure. Bree responded to the recovery drug straight away and lost consciousness (that's an expected result), but her breathing which had already been quite laboured during the seizure (she was on oxygen to help) slowed to 2 breaths a minute and then stopped. She had to be "bagged" which is a nice way of saying that her lungs had to be inflated manually (the same as the breathing part of CPR).
A little bit more happened during that time, but some things are better left unsaid and suffice it to say that if it wasn't for some wonderful and competent staff at our local hospital we would have lost our little girl.
Bree made a full recovery though and we took her home 4 days later much to the surprise of the medical team involved in the whole scary ordeal.
A week later (last week) we went back to hospital again, luckily it wasn't a seizure this time, but we didn't tell many people what was really going on because personally I am sick of Bree's life being a constant drama. We kept our Facebook statuses vague and I would have kept it out of public knowledge altogether if I hadn't slipped up by mentioning the emergency waiting room in one of my random whinges! Because I want to stay true to my word about sharing our experiences and being honest (dammit) I've decided to share it after all. I apologise to those friends and family who I was not completely honest to.
Bree had started bleeding from her PEG on the Sunday and as that could mean so many different things (it's a direct entrance to her stomach) she had to be admitted to hospital and have countless tests.
She also had a temperature that would not go below 38.3 degrees.
It turned out that she had a virus (RSV) which she had picked up in her previous stay and in trying to control her temperature we had aggravated her stomach with the Nurofen (which it would seem she cannot use).
Her stomach had to remain completely empty for 3 days to allow the stomach and bowel lining to grow back so she was kept on IV fluids for that time.
During the same admission she was also classed as Failure To Thrive (again). This means that her weight compared with others of the same age is too low on the charts and has dropped dramatically from her previous reading. Rightly so as she now weighs exactly 10kgs. At a length/ height of 86cm that is quite light.
Although the particular virus Bree had is harmless to a regular, healthy child, it made her incredibly unwell and she had to be placed into isolation to remove risk of further infection. There was a lot of concern about how long she would be in hospital due to her health and there was increasing concern about her prolonged high temperature readings. Of course the main concern was centered on her weight. It is not ideal to remain on a drip for any length of time as your only form of nutrition and it is definitely not advised in underweight children.
In true Bree style though just as we thought things could only get worse she picked up the next day and 24 hours later on the Wednesday was headed home.
Amongst all of the stuff this month Bree is progressively getting more and more irritable. I've come to the conclusion that it is pain due to her muscles being overly stiff. That is the nature of her type of Cerebral Palsy. Her muscles cannot relax like a regular person's. We physically have to help her when she stiffens up and there is only so much we can do for her. Even when she is "relaxed" her muscles are still tight.
Tight muscles lead to muscle contractures and muscle contractures lead to weak bones. Weak bones lead to Osteoperosis and that leads to fractures. This is the "hidden" side of this condition. When you see a person with CP holding themselves in strange positions you don't consider the pain it must be causing to their little bodies, but if you think about how your muscles feel after a good gym workout then you can relate a little to their pain and discomfort. If you've ever broken a bone then you can relate a little more.
So that's our medical stuff up to date from the last post...
If you think it's a bit to take in just reading it, you should try living it...
I suppose reading over this it is understandable that we feel like it's all a bit much lately. It makes sense that our energy levels would be low, especially since Bree still won't sleep more than 3 hours at a time. But the honest truth? The real reason we can't deal with anything else right now...
We feel so alone in this journey...
We have many people in our lives, wonderful friends who care, wonderful family who love us and help where they can, but we don't have anyone that lives our life and knows what a regular day for us consists of.
No one is walking our path with us and even we aren't walking the same path as each other.
I write this blog in the hope that I can share our story with others sharing the same ride. I hope someone comes along one day and goes "Oh wow, that's exactly how I feel". I hope that by being honest and open I can help someone else who is struggling along.
So in keeping with my promise I have to tell it how it is
Being a parent of a complex child is hard. It is isolating and it is overwhelming. It is something that you will never relate to if you don't experience it yourself.
For all the inspirational quotes in the world you will still not find one person who is happy that their child has to suffer like this.