We have been out to Ocean World at Manly (so not wheelchair accessible for anyone thinking of visiting - but Bear Cottage residents get free admission):
We've been to the beach:
And have made sure we've had at least one spa a day:
It has been great to have a break from our everyday routine. As Ashlea is sleeping upstairs with the nurses they have taken full responsibility for her care. She gets bathed, dressed and fed by them - and they even make up her formula and give medications. Did I mention there is also a chef so we are being well fed too!
It's a pretty full on place to come for respite though. There is a family here at the moment for end of life care with their child. There are a number of children who aren't here for end of life care right now, but you know they will be in the future. When you check in you have to sign consent forms regarding your wishes if your child deteriorates - full resuscitation or palliative care with no heroic measures. That is full on. There was no option on the form to write HELL YES SHE IS FOR FULL RESUSCITATION, so I just ticked the appropriate box and signed.
Seriously, Ashlea's issues are small potatoes in this alternate universe. She is the child that the nursing assistants are given to look after as she is so well - relatively speaking. So many people with 'normal lives' look at us and think they could never cope with what we have to cope with - but there are so many people in much worse situations than us. I have the luxury of being able to distance myself a little bit as I know that once Ashlea has her transplant and - God willing - a healthy working kidney, she will no longer be eligible to come to Bear Cottage. Most of the other families who are here this week don't have that luxury. We are very fortunate.
It's a weird situation. Yes we are having a good break and enjoying not having to worry about cooking and cleaning, but at the same time there is the reminder of illness and disability all around.
Our plans for the rest of the week involve getting out and about as much as possible to make the most of the opportunity to have a family holiday. We hope to get to the zoo and the movies (all compliments of Bear Cottage which is very nice) and definitely back to the beach.
Today we met the surgeon who will do Ashlea's half of the transplant. It was good to meet him and get some questions answered.
The most important thing we established today is that he thinks he will be able to fit my kidney into the lower right part of Ashlea's tummy rather than smack bang in the middle among her intestines. Apparently that is better because the gut recovers more quickly from the surgery as they don't have to disturb the intestines at all - they can just put the kidney in beside them.
The other thing we discussed was the timing of things on the day.
My surgery will start in the morning - probably around 9 ish. At that time Ashlea will already be at the hospital having blood work done and receiving her first dose of immune suppressant medication. Once my surgeon has seen my kidney and decided that it is definitely good to go they will take Ashlea down to surgery. Usually the children go in at around 12:30 ish. The first hour is taken up by the anaesthetist getting a central line in and doing whatever it is that anaesthetists do (go figure - I thought all they did was the crossword while you were asleep). The surgery then takes around 4 hours so Ashlea won't be in the PICU until early evening most likely. The surgeon warned us that she will be really puffy for the first few days as they pour heaps of fluid through the kids to keep the new kidney perfused. He said she'll also have a central line and a catheter in as well. Man is she going to be pissed when she wakes up. The surgeon suggested we speak to the anaesthetist about keeping her well sedated so she doesn't pull any tubes out. Knowing her I think that is a good idea!
As the transplant is getting closer it is becoming all I can think about. There has been a real shift in my thinking even just over the last week. Now that the school situation is sorted out my mind has really just switched into kidney mode. I am starting to prepare myself mentally for what is to come. I don't necessarily know how to do that in a healthy way, but I can feel myself distancing myself from the outside world and starting to become very inward focussed. I'm getting my defences up and starting to steel myself for what is to come. The last thing I want to do is talk about how I feel about the situation. I can't go there right now. Right now I just have to focus on getting through it.
I am still shocked from time to time that this is actually happening to us - that our family are about to live through this.
The good news though is that we are off to Bear Cottage on Saturday for some much needed respite. I have been very selfishly praying for good weather and good health for us for next week as we really need to have a break and be looked after for awhile before the big day in November.
And yes I will post an update from Bear Cottage - you know I won't be able to help myself!
On Sunday after church we went to the local community fair.
Once again the power of a cute child in a wheelchair won out and Ashlea got offered a free pony ride. So cute - it was her first time on a pony and she loved it. She mostly held onto the handle thingy (sorry - I'm not a horsey person) and only spent about half the time trying to ride the pony while covering her ears with her hands.
Just before her ride I came close to having a heart attack. While Emma and Audrey were hopping on the ponies for their turn I put Ashlea's brakes on her wheelchair and stepped away from it to help Murray.
We were on a hill.
I have now discovered that Ashlea knows how to release the brakes herself.
Luckily I saw her out of the corner of my eye as she started to accelerate down the hill - and was able to jump in front of the chair and stop her. I don't usually move fast, but I tell you I moved fast that day. Every time I think about it I have palpitations and feel sick all over again. The outcome could have been devastating.
Lesson learnt - never trust the small cute child in the wheelchair!!!
The transplant clock is ticking down quickly now. Today marks 2 months until the big surgery.
I'm getting nervous. I'm starting to have that on edge feeling all the time as I anticipate what is to come. It doesn't help that Ashlea's nephrologist keeps using the word rollercoaster to describe the first year post-transplant. I don't want to get on the rollercoaster!!! I've been on the Ashlea-coaster before and it was not fun. Now that we have had time off the rollercoaster I really don't want to go back to living with my heart in my mouth all the time.
Ashlea had a kidney appointment during the week. Her kidney function is roughly the same as it was last month:
I think that gives Ashlea a GFR of around 8 or 9 (mine is 111 to give you an idea of how low her kidney function is getting). Less than 15 is considered end stage kidney disease, so we're definitely there.
At each appointment the specialist drip feeds me a little more information about the risks associated with having a kidney transplant. We've already had the discussion about the risks in terms of the actual surgery - this time we had to have the discussion about the risks to the survival of Ashlea's new kidney. That was far more scary - those risks are much more real. The risk of dying in surgery is around 1 in 10000. The risk of kidney rejection is 15% - far too high for my liking.
In case you're wondering the risks are:
- blood clots
- acute rejection
There is a risk of a blood clot forming in the kidney when they take a large adult kidney that is used to a large adult blood supply and put it into a smaller child's body with a smaller blood supply. In the last two years the doctor said she could think of 3 children who had developed blood clots - two of them were able to go back to surgery and the kidney was saved, the other child lost their kidney. Their brand new kidney transplanted from a family member. What a horrifying thought.
The second risk is rejection. In the first few weeks some people start to reject their new kidney straight away. Hopefully this won't happen with Ashlea as she and I are a good tissue match and Ashlea doesn't have lots of antibodies in her system yet.
The third and possibly scariest risk to the kidney comes from viruses. There are lots of viruses that are fairly harmless to healthy people but can cause serious problems for transplant recipients. The issue with viruses is that your body never fully clears them, so they can be passed from donor to recipient through the kidney. The serious viruses are CMV - which Ashlea and I are both negative for - although Ashlea is still at risk of being exposed to in the community; glandular fever (EBV) and BK virus. They don't test for BK virus until after transplant as I think it is pretty obscure but I know I am positive for EBV (glandular fever). This virus can be quite bad in that if a child gets glandular fever for the first time while on immune suppressants their body can do some weird thing where it gets itself into a pre-lymphoma state (that's cancer for those of you that are unsure). If that happens they have to reduce the child's immune suppression so they can fight off the disease as they don't want them to develop lymphoma. BUT the cost is that when you lift immune suppression you start to get kidney rejection and potential loss of kidney function.
Apparently these are all real risks that the doctos have all seen - rather than a 1 in 10000 risk that a doctor may have heard about but never seen. All the nephrologists have dealt with these complications. They are not all common but at the same time they are not unexpected - although very much unwanted.
So you can see why my stress levels are starting to rise. I'm starting to brace myself for what is coming - and am hoping and praying for none of these complications to occur and for the rollercoaster to turn out to be one of those little baby sized rollercoasters - rather than the Big Dipper.
Ashlea has been offered a place in the support class at our local public school.
One less thing to worry about. She's in. She'll be going to school with her sisters but will have the support she needs. We are very happy.
I don't think the school or Ashlea have any idea of what they'll be in for next year, but I'm looking forward to my children all being at school together.
Imagine that - only one drop off in the morning! Only one pickup! And best of all Ashlea will have all her therapies at school - so no more running to and from appointments on my days off work! Just think - I might actually have some time to catch up with friends. Or watch TV. Or sleep. I know in reality it will probably mean grocery shopping and reading groups at school but don't burst my bubble - I like to imagine myself having some free time next year.
So, who's free for a coffee? I'll be available Thursdays and Fridays from Term 1 next year.
Our prime minister may have the lowest approval rating known to mankind at the moment, but in our house she is pretty popular. Ashlea has just received her approval for the Better Start Funding that was promised before the last election - and we have used some of the equipment money to buy an ipad.
Ashlea is a big fan. It's only been in the house 2 days and she is already saying:
Where's my ipad? I need to play it.
She loves playing the apps that don't require much control - such as the xylophone, drumkit and any musical instrument ones (especially the burp and fart piano). She is quite quickly grasping the concept of how to control the ipad but struggles with the fine motor skills to be able to do it well. I want her to start being more purposeful with her movements and to start isolating her pointer finger to touch the screen - so I would love to hear what apps have worked well for your kids.
The ipad has already come in handy as a sanity saver too. Tonight we had dinner at a (new church) friend's house - and the people have stairs in their house. Ashlea has a stair obsession and had a 30 minute tantrum about wanting to climb the stairs (which were steep and slippery and definitely not safe for her). Cue the trusty ipad and the squalling child was distracted from her tantrum. Although she did later work out that if you stop screaming about wanting to go up the stairs your parents will eventually get distracted and you can sneak through the barrier they had constructed and climb up anyway. Four times.
So, what are you app recommendations? At the moment our goal is specifically about improving fine motor control - but I would love to hear what all your favourites are.
For Father's Day this year I promised Murray that I WON'T post the video footage that I managed to scrounge up of him singing Twinkle Twinkle Little Star at the preschool service last week. Instead I am going to post this video of Ashlea. She made Murray a card and some chocolate fudge at preschool, but this is her real Father's Day present (filmed last week during physio):
Emma's response when she saw it was to exclaim: "She's going to walk one day!"
In my head I know that children with Ashlea's level of cerebral palsy don't usually walk independently, but I still can't help but wonder....maybe? Could it be possible?
Even if she doesn't it's still amazing to see how far she has come!!
Most of you know that those are the big questions on my mind regarding the transplant. Unfortunately I'm not the only one with those questions on my mind.
During the week we found out that one of the children in the support unit at our school passed away. How utterly devestating. That is my worst nightmare as a parent and it pressed all my worry buttons.
What if that is us one day???
It didn't just press my buttons though. Since then we have had a number of discussions with Emma about how she is sad that the girl died (Emma knew her but not well), and we've also had the big questions.
Will Ashlea die during the operation?
Will Mummy die?
It breaks my heart that we have to have these discussions with our children. They're too young to have to worry about these kinds of things. I guess though that this is our life - and so we need to have these discussions. Other people can reassure themselves when they hear stories like this by thinking "well, that child was very sick, she had been sick a long time, she had a lot of things wrong with her" so even though she died, it is unlikely my child will die. We don't have that luxury. We can't distance ourselves as easily from this family's tragedy, because we are at risk of becoming that family. I know Ashlea is unlikely to die soon - but the reality is that she does have a serious medical condition and is therefore more at risk of dying than a 'typical' child. That is our reality.
I just wish I could shield my other children from it for a bit longer.