hopeful 4/52

Sunday – Day 4 of Platypus ward

All I want is to hug my darling girl and I do get the occasional hug when I help the nurses get her out of bed to get changed and things like that. Today was a good day and we spent a bit of time sprucing up with a nourishing foot massage with beeswax and essential oils of rose, geranium, lavender and cedarwood. Then the nurse gave us some shampoo and conditioner to brush her hair and put it up in a braid. Also, she could smell the conditioner which is a good thing, it is great as all her senses are good! We had a lovely quiet time together with me doing most of the chatting sharing updates of what is happening for over an hour today and seeing her alert is a wonderful thing! The other bonus is that she can open both eyes and that her face bandage is loose because the swelling is down.

When I arrived we had a bit of a convo where she showed me both eyes were open underneath all the bandages and we did her face exercises. The other good thing she did today was sit in a chair for 20 minutes with the physio. She still cannot speak loudly but can whisper words to express what she wants. Also, tapping the side of the bed to get lots of water to drink is excellent.

The cool thing is that she is not using the pain meds as much and is starting to feel bored but she does not want her phone. We really have to work out what she can do to pass the hours healing herself in the hospital. Podcast recommendations or Spotify playlists are welcome!

Overall it was a lovely relaxing afternoon we spent together, I can see her progress each day and it makes me so happy. Tomorrow is a big day with a skin graft on her hands and time for me to do a sleepover in hospital, it will be fine as I would like to be there when she comes out of anaesthetic.

Monday – Day 5 of Platypus ward

I have not been into the hospital today – yet! I will be going in for a sleepover tonight but I am still waiting for a call. H went in at 4pm and the doctor said she may be out around 9.30pm. It is the skin graft day for her hands and her thigh. The doctor called earlier to say said she has some deeper burns on her right hand and upper right arm which need to be filled with a “growing medium” (this is how we interpret it) before they can graft the skin on. Check out the video as it is put in place for all the cells to grow through it to create a foundation for the skin to be grafted upon. For all the pieces of the inside flesh to grow through will take up to 8 weeks before the skin can be grafted on, but it sounds like it will be worth the wait.

Today’s positives are that the doctor said that her face is healing well there will be skin grafts on her neck and maybe cheeks and forehead? They are waiting for another couple of days for the facial skin to heal. The doctors also noticed that the dressing on her face was so big as her swelling had gone down so much, which is wonderful to hear. H also has no catheter anymore, so that she can get up and go to the toilet with all the IV tubes attached to her on its wheels travelling by her. She also played cat stax today with my hubby and listened to podcasts staying half alert in bed. Tonight she will be pretty groggy after the long operation and skin will have been taken off her leg but there will be lots of pain meds to keep her comfortable for tomorrow.

Tuesday – Day 6 of Platypus ward

What a day after a sleepover at the hospital and getting to recovery at 1:30am I spent the night in the ward and woke up to the sound of the doctors doing their rounds. The theatre skin graft went well and it was quite a few hours of work and she came out with a vacuum-packed right hand and a left hand in a splint, so H has no use of her hands at the moment. The skin graft has to stay still to take so it will be elevated arms on a pillow for a while.

The morning went well with lots of people popping in starting with the doctors to check out the dressings and sensation of the fingers, the physio and OT team, the social worker, the pain controller and of course the nurse checking in on obs and the usual. It was quite a busy morning so come lunchtime it was time to rest and time for me to eat lunch. My hubby and I switched places as I went to get my COVID booster. And the report from the afternoon was that H was way more alert listening to the book read aloud by Dad – Six Crimson Cranes by Elizabeth Lim and practising face exercises. Considering, after such a colossal operation today was pretty good as we can see more of H’s face and see how the swelling has come down and that she is healing. It has been 11 days in hospital in total so far…

Wednesday – Day 7 of Platypus ward

What an amazing afternoon I had with H, she now has her voice back and we can chat about all sorts of things. We began with her worries and as she had already expressed this with my hubby this morning. He started a list of questions she has on the whiteboard for the doctors and her medical team. As H is a naturally curious person, she is wanting to know what is happening to her body. It was a rollercoaster of emotion for both of us as we spoke about the incident and what she remembers, what she remembers of ICU and her concerns on that she is going in for another skin graft tomorrow. The nurse coordinator and nurse agreed questions are the best way to ease anxiety. As I left tonight we were running out of room on the whiteboard so I left some paper and a pen so she can get her bedside nurse to write down questions. I left in tears today, but they were happy tears knowing that Holly is back to her curious self and really engaged in what is happening with her body. I reassured her that we were OK and that we are there for her every step of the way. She also knows that she has Team Holly sending love, prayers and healing her way from all over the world. I have told her that she has an amazing support circle surrounding her to get through this journey.

Today’s highlights are all incredible and H is progressing so well:

  • stayed alert and active all morning
  • had a physio session and we help with her 3x a day
  • tried all the hospital mushy food for the first time in 12 days
  • keen to add questions to her board regarding grafting and her healing journey
  • talking in a loud voice
  • showing worries and concern for her injuries
  • increased time with her face exercises
  • moved to new pain medication oxycodone
  • chatting to Dad and showed interest in Facetiming her friends, she has her iPad there now to do this!
  • spoke about how this experience is like a bad dream/nightmare
  • showing awareness and anxiety and we all agreed documenting her questions is an great way to ease the anxiety
  • awareness of what her body will look like, for example looking at her burnt finger and asking the question “Will I still have fingerprints?”
  • Seeing her reflection all bandaged up on the TV in front of her and saying my torso is the only part of my body unbandaged
  • she has moved rooms and has a lovely view of the park and the trams going by
  • listened to 3 chapters of her book in a read aloud
  • powernapped to rest her body

When H is alert we were researching all sorts of things like the different layers of the skin and what they do, checking out research papers on what purpose the silver bandage does in the healing process, we were also listening to recorded messages from friends near and far and generally chatting about taking this long journey – one day at a time. It was truly a huge leap today where she even said, “I feel like one of those superheroes in this bandage helmet”, her brother said it looks like Magneto. So here’s to an amazing healing journey for our brave superhero, we are all here for you ❤️

Thursday – Day 8 of Platypus ward – Face and neck skin graft in theatre

This huge sculpture is in the children’s hospital and it reflects the day today. H was in theatre for 8 hours today with her burns surgeon and the plastic surgeon and the rest of her medical team. It was incredibly hard for us, but a friend of mine who worked in theatre with plastic surgery said it is meticulous work. Now H is bald as the donor skin was taken from the scalp to match the colour of her face. The doctors saved her ponytail, so I have to find somewhere to donate it for a wig – if she wants to? Her hair will grow back in time and at the moment she is covered in bandages and cannot move for the weekend to give time for the skin grafts to take. Lucky we have set up movies for her, once she is alert again.

The call from her surgeon was that everything went well! That is all I want to hear, thank you! Her surgeon grafted her neck from her lower ear across her chin to both sides of her lower face down to her chest. The cheeks are left to heal by themselves, for now. They will reassess that at the dressing change and see if she needs a graft there. The BTM on her right-hand looks good. The grafts on her lower hand are looking good too! All grafts have taken well except for the BTM area which will take 3 to 4 weeks to be ready for the skin graft.

Her next trip to theatre is next Thursday for a dressing change – so I imagine a short time compared to today! After the weekend, she can be mobilised and stand up and walk about with the physio. At the moment she has to lie down with her neck extended.

It was a long day, waiting for the call but to be greeted with everything went really well, it makes me so happy! I am off to do the night shift sleepover for when H is ready for someone to visit her in recovery 🙏 So thankful for this amazing care she is receiving.

Friday – Day 9 of Platypus ward

Today I awoke to Holly in pain from the donor location on her scalp for her skin graft, she told me it was a persistent pain and did not go away with the pain button. So we got another pain med recommended for targetting the area – Endone to be given every 4 hours and will also be helpful in resting. As this weekend H cannot move due to the neck graft it is best that she is comfortable and healing her body.

It was a long night in the hospital but I could hear H breathing so that was a good thing. I had to close my curtain to rest, as the nurse was taking her obs every hour and hydrating her body through her IV. She can drink water but only through a straw at the moment. I used the time wisely to write notes for an assignment – at least Uni work is keeping my mind on something else for this time. I only have 2 weeks to go till I am done for this teaching period which will be good. When Uni is done, I have lots of reading and crafting to catch up on in the hospital.

The doctors did their rounds this morning and we were talking to them about how to relieve the pain from her head and they came up with multiple solutions as we need H to rest over the weekend. I spoke to her surgeon and she said this is the most traumatic part of the process with the surgery H had yesterday. Hopefully, things start to get better? My hubby and I also had a meeting with our medical team consisting of the OT and Physio, the teacher who consults with H’s high school, the dietitian, the child life specialist (organising social workers and psychologists), the nurse co-ordinator and our burns co-ordinator to discuss any questions we have for the next part. For now, it is going to be baby steps and we cannot see too far into the future and that is OK! As long as this part goes well, we will wait and see what is happening next. H needs to heal well in this waiting game.

We worked up the courage to look at the photos from surgery and see what is going on underneath all those bandages and it is way worse than I ever imagined. The neck area is 3rd degree right from under the chin down to the clavicle which is why the surgery took so long yesterday, it was very detailed work. Also, the right arm right around was burned severely so the BTM is taking well and in about 4 weeks the surgeon will have a foundation to be grafted upon. She was so lucky the nerves in the arm did not get damaged because her dominant hand would be out of action. The left hand also had a few grafts as well but it is not as severe as the right, it also required a couple of grafts on the fingers. The thigh had 3rd degree deep burns that were grafted as well. The face is now healing each day and there may be a couple of grafts to do on the cheekbone but because of the many blood vessels in the face, it helps with restoring the skin back to normal. Her nose now looks like it has bad sunburn and will heal over, so the surgeons are hoping for the same for the rest of the face over the next week or so. Her dressing change will be on Thursday next week.

The big realisation today was that we could have lost H if the rescue was not as swift as it was. My friend said to me today, was that if it wasn’t for the quick action of her friend and her Dad with the water there would be way more damage or even worse consequences. All I can say is thank goodness for the action of all concerned and that H got to a hospital as soon as possible!

Saturday – Day 10 of Platypus ward

Today I rode to the hospital to mix up the week a bit and I was riding against the wind to get there. I arrived with the thoughts of it has been 2 weeks of daily hospital visits and I did not even feel like having a chat with the lady at check-in. I felt over it! As I was riding I was thinking thoughts of there’s a chink in my armour after this traumatic incident, yep feeling a bit vulnerable. There have been feelings of PTSD with little sounds alerting me to feeling anxious to be extra vigilant and triple-checking cars when I am crossing the road. I am thinking that that fear of nearly losing my H and having to go through these two weeks. The silver lining was that today H and I had a lovely long chat after her afternoon nap and spoke about everything from what happened with the fire accident to how she is looking forward to Monday and getting up about and walking again. So I left the hospital with my heart full and happy that we will travel this road together, hand in hand for support. And speaking of support, I am so grateful for the incredible friends we have in Australia, NZ and CA sending so much healing energy and love our way ❤️🧡💛💚💙💜

Today was a celebration of leaps and bounds with:

  • texting friends on the iPad with 3 fingers on her left hand
  • H’s nose is nearly healed and the top lip is blistering the old skin away
  • H is doing face exercises with her eyes and leg exercises
  • Can talk at regular volume and have long conversations
  • Enjoys listening to audio books
  • peacefully resting and healing and staying still for her neck graft to take
  • communicating so well, today was the most amount of conversation we have had in months (remember she is a teenager usually in her room on YouTube!)
  • ate a few bites of ice cream and said it felt cool in her throat
  • Had a long tak about what happened and how lucky she was that everyone mobilised to get her to hospital

The highlight was that she mentioned what I had said to her when she was leaving and I kept on hassling her to put a hat in her bag in case she got sunburnt. She said to me, this is not what you meant hey? Looking at the bandages on her hands and pointed to the ones on her face. Something was telling me that day that I need to protect my daughter and H just said to me, I have the sunscreen that will be fine! My mama’s intuition deep down was trying to communicate to tell her to be safe around heat. I also wanted to be brave and let her be independent and responsible. The lesson learned I have to listen to my mama bear intuition in the future and give my children big protection hugs every time they go on their adventures.

Sunday – Day 11 of Platypus ward

As I rode home from my visit to H today I felt joy in my heart and I felt the flow of riding towards the sunset – our darling girl is back again. She had a good sleep last night, as she had a lovely dose of melatonin.

When my hubby arrived this morning, it started off well as H was chatting to her friend on FaceTime for about an hour! Afterwards, she felt a bit fatigued and had a bit of a nap. The good thing to see is that she is joking around with her friends about starting school and not having to go. The other great thing was that she was talking about the campfire accident with her friend and saying she was wrapped in glad wrap in the helicopter on the way to the hospital. As she was chatting, she was looking at her face in the camera after 2 weeks wrapped up in bandages. I asked her if she was fine and she smiled and said, yes. So many good things happened today:

  • Her face is healing and we can see her top lip and both of her eyes are shining bright
  • Did her physio exercises with her eye exercises and leg lifts
  • Wanted to chat to the family on the phone as she knew they were worried, so she left messages and enjoyed short chats
  • Chatted to her super cool nurse Jess about cats and they showed each other pictures of their pet cats at home

It has been over 2 weeks now of daily hospital visits and the time is coming where H is getting bored and she is so thrilled to have three fingers on her left hand to navigate around the iPad. The way she talks about her recovery is inspiring and she is so looking forward to the day when she is off the IV and can take a walk down the lift to catch up with family and friends. As I left she said, “I miss you!” and yes I surely miss her too! We will be counting down the days until she is at home with us again, here’s to a speedy recovery my love and light🌟 ❤️‍🩹

4 thoughts on “hopeful 4/52

  1. Thinking about you all each day, Trish. Thanks so much for keeping us updated. When S feels terrible and is looking for distraction, a lot of times a book he’s already read is the ticket. Something that takes you to another world and is a series, so it goes on for a long time. Like – Harry Potter on audio – Jim Dale’s voices are so great. Or he also likes the Inheritance series. The familiarity feels good but it’s still distracting. Just an idea. Please give our love to Holly. Rebecca says “Hi!” from one bed to another (just joking – she has mono and is in bed much of each day!) and that she’s thinking about her tons. And Sam would really like Ashwin’s Whats App info, too, he would really like to text with him. Hugs to all of you.

    Liked by 1 person

  2. Thanks for writing your thoughts and keeping us updated. It’s wonderful to hear that she and you are feeling better. Hoping she continues to heal and sending my love.

    Tracey

    Liked by 1 person

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