Month: October 2017
This afternoon I picked Zac up from school. He was bright and chirpy and happy. He had enjoyed school and had a good day.
Nothing special happened at school.
He had all the usual subjects, including ones he doesn’t particularly like.
There was no lunch order as they don’t have canteen on Tuesday.
It was just a normal day.
But Zac was happy and bouncy.
It’s been quite some time since he’s been like this. Usually school leaves him flat and tired. Generally life leaves him flat and tired, especially when there is worry and anxiety added on top of the usual ME/CFS symptoms.
This was such a boost to all of us. We have been living in a flat mood of worry for so long, having a spark of happiness was such a change. Such a lovely change.
We have been living with ME/CFS for over four years. An article I read shortly after his diagnosis said that most kids recover around the five year mark and I’ve held onto this hope that Zac will fit the mould of the “average” child with ME/CFS. Days like today give us hope that he will be returning to life as a teenager, a life like the other kids in his class.
May there be many more days like this,
I have been wanting to post about this all day… but Nat wanted to surprise his grandparents the same way he surprised me this morning.
Let me start from the beginning. This morning I had an appointment at the hospital at 9am. I got a message to say it had been changed to 10am. As I was already on my way, I stopped at the hospital cafe for a hot chocolate (I’m not keen on their chai) to wait. Nat messaged me to ask me to tell him when I would arrive. I replied that I was sitting in the cafe.
The next thing I knew, there was a tap on my shoulder and there was Nat, standing up and wearing socks and shoes!! The wheelchair was nowhere to be seen, and there were no crutches or walking frame! He was walking!
I was so excited, and Nat had a huge grin on his face. He asked me to keep it a secret as he wanted to surprise his grandparents.
When I picked him up, he wanted to push the wheelchair out of hospital.
We went to pick up his brother from school and everyone was happy to see him out of the wheelchair. Many people commented on the power of prayer, I added that there was also a lot of hard work involved.
Then we went to surprise his grandparents.
We rang them to come and meet us. Nat sat in the wheelchair, then jumped up to greet them. They were really excited. We went to Aristo Cafe for a celebratory drink and Yaya insisted it was the rice pudding that made the difference, before giving the boys some rice pudding to take home with them.
There was quite a celebration over dinner as we were able to eat outside in the breeze without Nat needing to come inside due to the pain.
There is still a long road to go, but this is an amazing beginning.
Nat had his first full day of intense rehab today.
Last night, I left him in the hospital with the promise we would visit first thing in the morning. Zac especially wanted to see his brother and make sure he was OK.
When we visited this morning, Nat was sitting up having breakfast. He looked happy and settled. We only stayed for a short time so I could got and take Zac to school before returning. I really wanted to see the physio and find out what was happening this week.
On my return, Dave, the physio, was talking with Nat. They started talking about the goals Nat had. These weren’t life goals, as such, they were goals for doing chores around the house, personal care (eg having a shower), having fun, and generally getting back to life. He was asked to judge each thing on a 0-10 scale on how much he could do each thing, how happy he was with the situation, and how important each thing was. Some of the rankings were a bit more what we wanted to hear than how important they actually were, especially when it came to chores around the house.
I was then instructed to go off and go on with my day. Nat will be spending most of this hospital stay on his own with the pain team. We will be able to come in as visitors, but not be there during the day. So I headed off to work.
I received a few phone calls from the hospital with checks on medication and similar things that Nat wasn’t sure about, and I imagine similar calls will come during the week.
We went to visit Nat after dinner, along with his 6 year old cousin. We had fun going down to hang out with Radio Lollipop in the atrium before taking Nat back up to the ward to catch up on how his day went. He worked really hard today with three physio sessions! You can read about his day on his blog here. It’s going to be a difficult time, but we are looking forward to seeing results.
He has asked me to visit first thing tomorrow, so I’ll call in on my way to work. Nat will be in hospital on his own, however I think my mind will be half in the hospital!
One really exciting thing was seeing him stand up when he transferred from the wheelchair back to his bed.
I have a folder for each boy that has copies of any medical reports we have received in them. Until last night, they were a jumbled mess as I’d put anything I found in them!
Last night, I decided to sort them out. They are now in order by year, separated by dividers. This was a harder task than I had thought…
In it are reports from ED when Zac was 6 and he had a fatigue-like medical condition and we didn’t know what it was. There are reports from Nat’s early ED visits with leg pain (before CRPS). There are reports from schools, blood test results, and more. Each piece of paper I looked at brought back memories and feelings that I had thought were long buried.
Having the folders organised, it also means that if I find any other reports, it will be easy to put them in their correct places.
It may seem strange that I’ve kept the reports going back to 2010, however having kids with chronic illness means that doctors want their entire medical history and they ask dates and medications. Having these folders means that I have this information at my fingertips.
I really wanted this done before Nat’s next inpatient stay tomorrow so that we could easily find reports we needed if we need them. It’s also nice to know that the folders are finally organised, it’s been on my list for ages!
So far this year, Nat has had two in-patient stays in the Monash Children’s Hospital, and is heading back in on Monday. Both stays have been extended stays of four weeks and three weeks. We also go there at least once a week for physio and psych appointments as well as follow up appointments with specialists.
Here are some of our observations and things we appreciate:
- Friendly staff – from the medical staff to the support staff, everyone greets us with a smile and is welcoming, both to my son who is a patient, and to family and visitors who come to visit. We are getting a bit of a reputation so they remember us… see this post for more on that!
- Bright environment – being sick and in pain is depressing at the best of times! When you’re in hospital for an extended period, it’s not fun at all. Being in a place that is bright and clean helps to make things a little bit better. It’s much more fun looking at the bright patterns on the walls than a dull, grey wall.
- Atrium – the Atrium at the hospital is a great place to hang out when my nephews come to visit. They are able to run around, climb on the crocodile and rhino, dance near the interactive wall, and the grown ups are able to get a coffee and either sit in the atrium or at the end of the cafe and watch the kids play.
- Day Bed – In the private rooms Nat has been in, there is a day bed. For his first stay, this was a great place to play board games with his cousins. In his last stay, he was on a ketamine infusion and didn’t want to be alone. This is a much more comfortable bed than a fold out one, not quite my own bed, but it was a good place to sleep.
- Starlight Room and Ronald McDonald Family Room – both of these rooms provide an escape from the ward. They are somewhere we can go to play games, get a cuppa, have a quiet time, meet with other parents/kids, and generally escape for a while. The Starlight Room is also a fantastic place for Nat and Zac to hang out together and play some computer games.
- Volunteers – there are numerous volunteers who work tirelessly to help make hospital a bit more bearable. This includes people from Radio Lollipop and the Starlight Foundation who bring games to play, people in the Ronald McDonald Family Room who are happy to bring a cuppa and a box of tissues to overwhelmed parents, people who welcome you when you arrive, the therapy dogs who come to visit and have a cuddle, and so many more.
- Gigil Cafe – when hospital food is getting boring, or even a hot chocolate after treatment, or food for Mum, the cafe has a great variety of food during the day. They even have a burger bar for lunch! It would be even better if they had delivery to the ward when Mum really needs a coffee but can’t leave the bedside…
- Hospital School – this has only just opened, however during our last hospital stay, the Principal of the school helped us to come up with some projects for Nat to help get him back into doing some school work. This was planned around his pain and acknowledgement of his physio and therapy requirements. When preparing for his next stay, we are packing his books so he can continue his work while in hospital.
- Parents Room – on the ward, there is a room with a fridge, microwave, and tables and chairs where parents can store food, get a cuppa, and sit to eat. We also used this room to have a family dinner while Nat was in hospital. We would bring our dinner from home and sit around one of the tables with Nat. It was much more comfortable than trying to eat around the little table in Nat’s room!
I’m sure we’ll think of more things to add to this post at another time, and will probably create another post when we think of them.
If you have been to the Monash Children’s Hospital, what sorts of things would you add to this list?