Hopeful 8/52

Monday – Day 31 of Platypus ward

I went in at the usual time thinking the face clean was going to be later in the afternoon but instead within 20 mins of arriving there was a call to go to the theatre! This was great news as it meant H could eat earlier. As the procedure was going to take 1 hr 15 mins I took a tram into the city to go for a walk and track down some food for H. Lune croissants close at 3pm so that was out so then I realised she had not had a bubble (boba) tea for a long time! I went to a bubble tea place and caught the tram back in good time to hear that she was out in recovery. She had the tube down her throat to breathe, so the cold tea felt really good for her – so a win for the bubble tea! Recovery took ages to leave as the nurses in the Platypus ward were super busy and could not come down to take her back. We ended up going up with one of the recovery nurses as H was the last one in the recovery bay. I kept on saying we have to go as she needs to eat as she has fasted all day! Soon enough we got back up to the room and there was some cheese she had saved to eat then I had some pasta and meat sauce tucked away in the parent fridge in case of emergency and she loved it. H ate till she was full and then I left her on a mission to chat with her friends online. It was a good day!

Tuesday – Day 32 of Platypus ward

22-2-22 at 2:22pm I was sitting around at the hospital listening to Jasmine the physio count down H’s neck exercises. H has come so far and to see her neck without the collar and just the bandages were so good, it is hard to imagine what is under there as that is all skin graft. She also had Hannah a fave nurse today who spoke about how H was independent and how well she was doing in her recovery (she saw H right at the beginning when she came in from ICU). The dietician also came by and upped the overnight feeds due to the number of times H has been fasting over the last week. The good thing is that she has an appetite and ate a felafel and cucumber sandwich today for lunch with lemon yoghurt, plus a pretzel and a nutritious milkshake. These are all good signs and all the doctors are happy with her progress. I like days like these where they have been pretty relaxed with having the burns bath with the face clean first thing in the morning where she is free to eat for the rest of the day plus get the extra feeds through her nasal tube directly to her stomach. Hopefully, tomorrow will be much of the same and we can have minimal drama. H is happy at the hospital and I only stayed for 3 hours today which was better than yesterday’s 6 hours at the hospital. The randomness can be very tiring.

Wednesday – Day 33 of Platypus ward

Going in earlier has been very helpful with getting some sense of normalcy back at home and having the time to sit together as a family. I also have the time just to do health focussed or creative focussed pursuits to gather my sanity. My experiments of getting to the hospital just after 12pm have been working as I assume the staff are on lunch and there are fewer appointments for the clinics so the line to get through security is short. It was great as I took my sandwich and ate it with H as she had her toasted cheese sandwich after her burns bath. I was listening to one of her nurses yesterday during shift change and her face is soaked in acetic acid for a period of 20 mins, that is a great amount of time to kill off those pathogens. Also, she is given ketamine for the pain throughout the procedure as it would sting like crazy. Hopefully, those pathogens are gone and the grafting can be done on Thursday. I only stayed for a couple of hours at the hospital as her teacher came to do a maths lesson, while I was there we went for a walk to see the meerkats and took the lift back up to the ward. H’s face is covered in bandages and all we can see are her eyes, nose and mouth and then she has to carry around her little vacuum pack bag to get around. There were so many children wondering what had happened to her, I could see the looks of curiosity in their faces or even the questions to their parents of “what happened to that girl?” It will be a long time until those bandages are off her face and arms due to the sensitive skin underneath.

Thursday – Day 34 of Platypus ward

I did not go into the hospital today as James was there from the morning doing his work and stayed with H until she went into an aesthetic room. Today was a big day of skin grafting with H going into the theatre at 1:30pm today. At 7:30 tonight the burns surgeon called us to say everything is good and she had grafted the forehead, cheeks and the spotty areas of her neck. They had to shave her head again to get the donor area from her scalp for her face. Also, her right arm was all good to go and the donor area for the skin is from the left thigh, this is her fresh leg with no burns or donor locations. H is back on the pain button as she will be using the bolus of pain meds to help her get through the next week. Next Thursday is a big dressing change again where the surgeon is keen to see if all the grafts took on her body – so fingers and toes crossed that the skin grafts do well.

H has the vacuum dressing on her right hand and is wearing the neck collar and still has to do her mouth exercises three times a day through the mouth is showing signs of contracture (the skin is healing in on itself) so she has to be more aggressive with stretching her mouth vertically after the dressing change next week. This was the last big surgery for now and eventually, the dressing change will be in the burns bath on the ward and way down the track dressing changes will be in the clinic – that will be a very long way away! The doctors will assess the healing on Thursday and until then H has her patient-controlled analgesia (PCA) to get through the week. H needs lots of healing energy her way this week to make sure that these skin grafts take. We will see her in hospital tomorrow as tonight she is groggy and has a nurse taking care of her every 30 minutes.

Friday – Day 35 of Platypus ward

My lunch date plan is going well this week and being Friday the clinics must have fewer appointments so parking was a breeze. So I got to the hospital in time to hang with H and my hubby for lunch and it was so nice to eat together as a family even though it was sandwiches and hospital food. I know the day will come when I can cook a meal and the four of us can eat together. I was truly surprised when I was chatting to H to see that she did not have her pain drug button and was managing with Panadol and Neurofen. She is still on antibiotics to keep the pathogens at bay and all the drugs are going in through the cannula in her arm. Her feeds are still through the tube at night of a highly nutritious milkshake and the good thing she is eating the food she is given and today was chicken tenders and cauliflower and peach stew, she also got a savoury baked treat with bacon from her Dad. I have all the organic food here to cook for her at home and one day she will come home to will eat with us, until then we will bring requests of pasta and dumplings from the freezer.

As I was driving home, I spoke to the social worker who was checking in after such an ordeal of an operation yesterday. It went for 6 hours but in H’s experience she just woke up with new bandages on and pain in new areas on the back of her head and her other thigh. Even the social worker was surprised at H’s resilience after such a long time in theatre. I said that she felt a little bit of pain and was carrying on just like another day in the hospital. Tomorrow H is even planning to meet up with her friends for a chat in the morning, so that is pretty cool. I am thankful that she is managing so well with the adversity that she has to deal with. When I said goodbye she opened out her arms and said don’t touch my head, so I hugged her close and kissed her gently on her shoulder with my mask on. I felt a surge of emotion come over me to cry tears of joy that her strength is getting her through and that we love her with all our hearts.

Saturday and Sunday – Day 36 & 37 of Platypus ward

Saturday – A pretty relaxed day with visiting the hospital in the afternoon after a lovely morning by the Merri Creek with my friend and her daughter walking their dog. H enjoyed her morning catching up with her school friends. Later, when I went to visit, H was just relaxing talking to her friend in California and enjoying a bit of Wordle (and Absurdle!) while I was there so she was happy to have some time alone.

Sunday – My hubby went to visit in the morning and H was arranging her room and going for a walk as she can’t overexert herself too much due to the donor spot on her leg and it starts to hurt. I stayed home Sunday as the house needed to be cleaned and I had gardening to do. My hubby and I decided to do visit alternate days at the hospital as it is getting quite tiring going every day. So this week we will see how this goes, H is pretty happy with the arrangement as it gets quite busy in her ward during the week.

hopeful 7/52

Monday – Day 24 of Platypus ward

Today sucked so hard!!

It began with a plan of getting up early as H was going for a dressing change in surgery. I planned to get up early to get my meditation and yoga done so I could go to the hospital for a couple of hours and maybe go to the city to get some croissants for H for breakfast tomorrow. But NO that did not happen. Yes, these days I cannot plan 2 days ahead let alone know what is going to happen next week so I should be getting used to last-minute changes at the beck and call of the hospital. What did happen was that H had to fast as she was going under anaesthetic so she had not eaten anything since dinner last night. All cool, she just had water and chilled out watching YouTube while I tried to get my exercise done before getting ready to leave. So as soon as began doing some yoga – the high school rang to let me know the plan for H’s future learning, then my uncle rang to have a chat with H and see how we were doing. Then the hospital rang with the shittest news that the pathogen had become resistant to the antibiotics that H has been struggling to take all weekend! What that meant was that I had to cut my yoga class short as the doctor said that we had to go into the hospital earlier at 12pm to check-in for the procedure plus H has to go earlier into her hospital admission from today as she will be on IV antibiotics to hopefully kill this pathogen that is on her face.

Cool, this meant my time to do yoga was disturbed within 15 minutes of starting and then I had to help with H get herself organised for a stay in hospital from today. Talk about a teaser last weekend of having her at home with the family, it now looks like she is going to be in hospital for another 2 weeks. So we left to get checked in for the day and all went well with a very thorough admissions nurse, then she took us to this room where we had to wait for at least 2 hours, as there was a child in surgery before us who had a very long surgery planned. By this time I was getting hangry and needed to get something to eat, so I left H in the room and took off for 30 mins to get some sunshine and eat a sandwich. I came back and H said that a couple of people had come in to chat and said she wasn’t going to go in until 3pm – so we waited and waited and waited in a room with no TV and no window, it felt like jail. I called the Platypus ward to get some info on whether I could take a bag and the wheelchair up to the room but no one had any information of where H was going and that someone from the team would call.

It got to a point where I could not sit down and read and listen to calming music any longer. WTF was going on?!? H was super itchy on her head and writhing in pain, had not eaten since last night and did not want to drink water because someone said she could not drink 1 hour before anaesthetic. It came to the point of how do we find someone to help us. I called the nurse in charge number of the Platypus ward in desperation as H was so uncomfortable with the itch on her head. They said, “oh didn’t the team call you back?” Nope, no one has called, please tell me what is happening and why are we still in this random room 4 hours later?!?

The next minute the nurse from the holding bay for theatre came in to take us away and here is where we watched some TV for about 30 minutes until the anaesthetic team came to take H away into dreamland. As it turned out, they were the coolest people I had seen all day as they showed us a picture of a Maine Coon cat before H drifted off to sleep. I have to say he was quite gorgeous and at 12 kg quite a big kitty! So I left to gain some sense of composure before driving home as I was very frustrated from being in jail for hours and it was not a good idea to drive in peak hour traffic. So I decided to go for a bit of an afternoon meditation to ground myself before coming home. I wandered to the top of a hill and sat there listening to a couple of meditations to clear my head and earth my body before going home.

Then as I was planning my exit I saw the hospital number come up on my phone – it was now 5:45pm. H was out of the theatre and the burns fellow told me what had happened with her face and dressing change. The Drs had really cleaned back all the scabs to get rid of the pathogen so they had left raw skin under the silver bandage and redressed everything. They also swabbed to check on the infection, to see if they need to target it with a new antibiotic as this is the problem with burns they get infected! So the Dr said it will be an hour until she is out of recovery, so now was my opportunity to get away from the hospital. I was in the Basement 3 car park when I saw the hospital number again and it was the recovery nurse. OH NO, H was awake and wanting to see her parents, so I was up to the 3rd floor of the hospital again! She was in so much pain from the debriding and clean up and got the meds for pain which was great. She was also so itchy from all the open wounds under the dressings but she could not access her anti-itch medication. It turns out as she had been discharged on Friday she needs to access all your meds on your chart again from scratch OMG!!! There was nothing else I could do the nurse was trying to contact the doctor to get authorisation to give her these meds but no one was responding and I left H writhing on the bed in her new room saying, “there are a million little legs walking all over my face!”

My body and mind were so done for the day that I just had to leave her in front of SBS food trying to distract her. She was getting mad at me because she hurt so much, but I still had to stay calm and collected even though I felt like screaming. It was time for me to leave. I got in the car and listened to my audiobook by Eckhart Tolle and it was at a chapter on your children suffering – it was perfect for what I was dealing with. His calm voice helped me to safely get home in one piece. But when I got home, my hubby was super helpful with me processing the rollercoaster of emotions I had suppressed all day – I walked into the kitchen and screamed, THIS DAY WAS SO F……D UP! I ate dinner, we chatted and then I was balling my eyes out in tears saying this is so, so hard. Having to deal with this accident is the hardest thing we have had to do in our lives because just when it feels it’s getting better, we then get hit by a roadblock and it sucks. Tomorrow is a new day and at least I know what we are doing for the next 2 weeks, spending our half days in the hospital with H. Thank goodness I had a rest day on Sunday!

Apologies for the swearing but it feels good to get it out there…

Tuesday – Day 25 of Platypus ward

I said a mantra this morning, “today is going to be a good day” to help set the tone after yesterdays hell! I went to the hospital and found a car park near the zoo for $2 for 5 hours which works out quite nicely as the walk to and from the car is past some beautiful big trees at Royal Park. That part worked out well but when I got to the hospital I found a very cranky daughter sitting in front of her computer not even acknowledging that I came in. I had a quick chat with her about the call I just had with the dietitian and that she has to eat lots more as she has lost a kilo in the last week. The plan is to eat lots more fats and get into the high energy diet of pasta and protein so her body is not using all her energy for healing and she still has more to spare for her own energy. She has been given some dense hospital-grade nutritional drinks which will help and hopefully she drinks them tonight as well after her vegetable risotto, beans and butter dinner.

Then I realised that H was cranky from drug withdrawals. When you are discharged from the hospital your drug chart disappears and you start again. H has been super itchy and generally felt uncomfortable all over her body, this is when I realised that the pharmacist said Gabapentin has to be weaned off gradually. It was then I realised H was going cold turkey from not having the doses of Gabapentin she had been prescribed, she had been uncomfortable since yesterday afternoon and after the dressing change! I got the nurse to call the doctor and get it prescribed and bam, she was ok again. Holy moly, I have realised with this readmission we have to advocate for ourselves as we are treated like hotel guests as the drug file is gone and I do not even know if the nurses realise we were only gone for 2 days. It is crazy that 2 days at home can create such havoc when going back into the hospital, it is still the same case they have been treating over the last month. My hubby and I were talking tonight and saying that as the burns coordinator is on holiday, we think she is the conduit of communication and everything has fallen apart without her supporting the team. Maybe that theory is true, who knows?

Tomorrow we will hopefully have a chat with our social worker who has said many times, “yes we will support you through this”. It seems that now that we have checked back into the hospital again we need to go over all the information about our time in hospital over the last month and why are we bothering them. Who the hell knows what is happening, but all I know is that we have lost trust in their care due to yesterdays mess and incompetence. Yes, they have apologised for yesterday as it was a last-minute decision by the doctor who had no time to let anyone know anything. We have a list of questions for tomorrow, as the whole process is painful not only for H who went through drug withdrawals from lack of communication but for us as well as we have to jump through many hoops again to get the care that we had just four days ago!

Wednesday – Day 26 of Platypus ward

Man, what can I say except that the time has come for H to do her own healing and gain her strength? She has been asked by the doctors to eat lots but she is not hungry, so now she is getting the Nasogastric tube again put back in tomorrow for extra nutrition. The problem is that she is not using any energy laying around in a hospital bed as her body is using all the energy to heal, so she is losing weight. She needs to snack out in between meals but because her appetite is not there she doesn’t want to eat. We have even stashed dumplings away for her in the fridge to heat up but she did not even want them today. Again, her head was super itchy and she was uncomfortable and cranky and got mad with me for putting relaxation music on. It is hard because as a mother you are trying to help but I still have a strong willed 13 year old in that hospital bed who can be rude to me. To be honest, she is probably fed up with seeing us in her ward everyday!

Today our team has come together again and we were told that everyone is still here to support us. It is just that the co-ordinator is away on holidays so everything is a little bit messy with a lack of communication on Monday. I even spoke to a couple of the team members who reassured me that they are not going away and what happened Monday will not happen again! When I got to the hospital this afternoon the burns fellow was there chatting to H about the pathogen on her face. She was describing it as a resistant one as it creates a shield around itself to protect itself from the antibiotics, sounds like a familiar Covid story! So the plan now is to have daily dressing changes and cleaning up the skin with an acetic acid to get rid of any pathogens. H will not have to go under anesthetic everyday, they can use nitrous oxide or a tablet that can numb her face so they can clean the face and do the dressing. Hopefully, with this plan in place they can get rid of the infection and graft the skin to minimise scarring on the face which is on the cheeks and forehead. Her ear dressing is still being changed daily to keep that infection at bay but the face moisturising with parrafin is done by us, maybe? We need to get the info on all that as somehow that was wiped from the file too!

Thursay is a big day and H will go into theatre into the afternoon for the skin graft on the BTM, over the new cells that have grown inside her arm which was a full surface burn. Then it will take up to 2 weeks to take and heal. So it should be a long time in theatre tomorrow with using skin from the donor site which will be her other thigh to get some skin to graft graft it around the whole arm. The surgeon did say that the arm would have to be vacuum sealed again so that it holds the graft in place. Currently, it is now 5 weeks in hospital with another 2 to come, if we are lucky. The big problem is the face infection which is hindering the plan forward. We definitely need to pace ourselves and if we could send in family and friends to be at the bedside that would be amazing but all thanks to Covid it is just the two of us and it is exhausting. I think H does not mind being by herself at all, she is going to have all her appointments happening again so that will keep her occupied and we can reduce the time spent in the hospital.

Thursday – Day 27 of Platypus ward

Random Acts of Kindness Day

Today I did not go into the hospital at all. I think that was a way of being randomly kind to myself as I needed the time to enjoy some meditation outside where I still see butterflies in the cloudy sky.

Today reports from the burns fellow at theatre were that they did not do the skin graft on the right arm today due to the BTM – as “a synthetic device used to facilitate the growth of neodermis prior to definitive wound closure” was not fully integrated yet so they are waiting another week to graft the skin. This makes sense as ideally, the doctors want all the cellular material intact before they graft the top layer of the skin. So it is another week in the hospital to hopefully complete the skin graft on the arm. It works out well as the doctors will be cleaning the dressing on the face every day to keep the pathogens at bay and then they can do both together, fingers and toes crossed.

To pass the time hopefully we can have some visitors at the hospital over the weekend. Then it is time for waiting for the body to heal and try and get H to eat some more food as the doctors need her to eat more. Until tomorrow, I am over and out.

Friday – Day 28 of Platypus ward

My hubby and I both decided to go in later today as the doctors are performing daily dressing changes and cleaning away the pathogens with vinegar while she is under sedation. They had advised us they would like to do it first thing in theatre but she continuously gets bumped by emergency cases. H was asked to fast from the morning so by the time she went to the waiting bay for theatre she was starving. She finally went in yesterday afternoon at about 2pm she was chatting to the surgeons when they were cleaning and dressing her face and whenever she felt the pain they upped the pain meds intravenously so she got a direct hit. According to her surgeon, the dressing change went really well as they were cleaning up her face. She was conscious throughout the whole procedure as the acetic acid was used to get rid of the resistant pathogens.

When we finally saw her around 4pm, she was so hungry so we gave her nuts and snacks we had stashed in the room as well as the dumplings that were in the fridge. She also ate almond meal choc chip biscuits to fill that empty tummy! Then we also ordered dinner which was mac and cheese with chocolate pudding and a bread roll with butter. It is so good to see her eat so much. Once she had eaten she felt quite tired after two days in a row of being anaesthetised. We left her texting her mates and then came home for a lovely vegan dinner of tofu satay, couscous and arancini balls with salad.

Oh, and why is that meerkat in the pic, we finally found the little mob of meerkats that live by the clinic on the ground floor. They are there for the children to watch as they wait for their paediatric appointments. I love watching them and they reminded me of the meerkats at the San Francisco zoo which we used to love! The Melbourne Zoo is super close to the hospital so we will have to go there again soon one day.

Saturday – Day 29 of Platypus ward

I went in way lat Saturday as H was scheduled for a vinegar face clean but she did not go in until 4:30pm, which meant she was fasting all day!!! The idea the doctors had was that she would get the face clean done early and not have to wait for theatre, instead, she has to wait for the anesthetics doctors to give her the sedatives which send her a bit loopy and causes mind wipes. When I finally got to the hospital it was really late and I was loaded up with food for her to eat as I was a bit annoyed that she had not eaten all day. I do hope this fasting does not mess with her healing process!

Anyway, I found her eating a dinner of pasta Napoli with a bread roll, butter and a strawberry dessert. She was still a bit out of it and dropping pasta sauce all over her white hospital gown with her left hand (she has a dominant right hand but it is vacuum-sealed). It was great to see her eat and eat and she ate for about an hour as her dad had made fresh pretzels and her friend had made her choc chip cookies that were eaten with gusto. She had eaten enough and it was time for the sorbolene moisturiser to go over her scars. I waited half an hour afterwards and put on a silicone strip for the upper arm to help with scar management and also helped put on her pressure pants which are skin coloured bike shorts to help her thigh heal.

It was great to see her eat as she was starving all day, the chefs who deliver the food are becoming familiar with her as she has been in hospital for over a month now. There are 45 nurses in the platypus ward and now we are getting to know a few, plus she has her favourites who love to talk about cats. The hospital is our second home now and we are minimising the hours so it is sustainable for everyone and we allow time for ourselves and time for H to enjoy her TV shows just and chill out time alone.

Sunday – Day 30 of Platypus ward

Again it was another day of a vinegar face clean with H not going to get it done until about 12:30pm right on lunchtime. Luckily my hubby was there and was prepared with a feast from a local bakery in Brunswick. He bought her a slice of quiche, ham and cheese croissant and a chocolate croissant. He ended up waiting for the burns bath to be over which took over an hour and a half so he could shovel food into her. I ended up starting some baking projects of cookies and also I had to clean up food in the fridge so I made a greens pesto with walnuts. By the time my cooking was done, I needed to do some weeding in the garden and then my day was done. H was pretty neutral about having another visitor and was happy watching TV so I saved my energy for another day to get through the week. Monday is a dressing change under anaesthetic and Thursday is hopefully the skin graft on her arm and face if those pathogens have been wiped out!

As H was under her sedative meds her subconscious mind brings up all sorts of stories – like when she used to take the crusts off the bread and roll the bread into a ball and put it in her lunch box to tell her friends she is eating play dough 🤣 Well this experience trying all sorts of drugs may be a good one as she gets them straight out of the pharmacy at the hospital, so maybe she will not be so keen to experiment with street drugs in the future!!

Hopeful 6/52

Monday – Day 19 of Platypus ward

Amazing what time out of the usual routine can do to the soul. I ended up spending just one hour at the hospital today and came home as H went into theatre. I said my goodbyes before she went in and then we waited for the call from the surgeon after the dressing change at 2pm this afternoon. At 4:30pm this afternoon, there was a little bit more was revealed about the face and neck healing. The good news is that everything went really well and the antibiotics have controlled the infection and they did a clean up of her face. What was discovered about the neck graft is that they only lost 25% of the graft and it is in little patches so that can be all cleaned up next time they graft. That is such a great thing to hear because they do not have to go into doing the whole thing from scratch which took a whole day. The cheeks and forehead are a little patchy so they would need to graft her face in the next couple of weeks. The ears are 100 times better and the ENT specialist will come by for the dressing change on Thursday to check and clean up the ear canal.

There was a hint about H coming home for a bit but that depends on many variables with her PT, OT, pain management and how much she eats. She has been to the gym today and practised stair walking plus she sat on the couch by the window today to enjoy the view, so she can get around independently with her vacuum handbag (this is what vacuum seals her arm). Also, the pain meds were tried orally today rather than through the tube and she said they tasted yuck, but what meds taste good?!? Anyway, the healing is happening which means we may have H at home soon and that will be a very good thing, I was so happy to hear this today. My heart was singing and I finally felt some joy in the air with the news today. I am thinking positive thoughts that things can only get better from here 💞

Tuesday – Day 20 of Platypus ward

Today was a good and exhausting day for H as she was doing lots of physical exercises today which made her quite fatigued by the end of the day. It was the first time she was faffing around and not wanting to do her face exercises at the end of the day and I get that she was done. But we ended up working around it and putting on some music to pass the time while she did them. Todays highlights are that:

  • H spent time at the gym – walking on a step, walking with parallel bars, squats, heel lifts and high knees – all done very slowly as she has not moved her body for 3 weeks. To me, this shows me the importance of moving your body everyday for exercise.
  • She does her hand exercises regularly to get movement in her fingers, she has to do face exercises and mouth streches to keep the elasticity in her face
  • H has been eating well and ate all the pasta and a breadroll and tiramisu for dessert
  • Is getting dressed herself and can put her own shoes and socks on
  • Got out of bed herself and carried her vaccum handbag – which she has used a guitar strap to make it into a bag and went to the toilet
  • Also H can move her neck around within the movement of the collar

It was great to spend time with her this afternoon and we did a bit of internet browsing for what she would like to add to her room and her next goal when she is home of getting in and out of her beanbag. Seeing the retraining of the body makes me feel so grateful that she can actually move independently by herself and get around even though it is slow. What it has shown me is the importance of looking after the body we have and taking care of ourselves – I am so looking forward to taking care of her with lots of good food when she gets to come home.

Wednesday – Day 21 of Platypus ward

Today’s team meeting went exceptionally well and H’s medical team are so happy with her progress. They wanted her to come home for a trial stay with her family to support her wellbeing and be with her cats. We will see as H is not so keen to leave the little cocoon of the hospital that has been her home for the last 3.5 weeks. She is scared to leave and we had a big talk about how she has healed over that time and that she is pretty independent with her hands (on the iPad for messaging) and can get around on her legs. Her surgeon is super happy about her progress and it is her suggestion in consultation with the Physio that H is recommended to come home for a small amount of time. Tomorrow H is chatting to her social worker about the reality of leaving the hospital bubble that she has been in and I did emphasise that it is up to her whether she feels confident about coming home. She did tell me due to the number of meds and the face care that the nurses have been doing for her that she is concerned about it all. But the thing is, the goal of her care team is to get her home into an environment that she feels comfortable in and get her out into the world.

The metamorphosis is going to be long and hard to get to where she needs to be but I assured her that things will happen not as fast as she envisions. The healing will take time and also her ability to do things will be built upon slowly. The rehabilitation is something that does not happen overnight as she still needs to have the skin grafts procedure on her arms and her face – hopefully, next week. It was important to reassure her that things are not happening as fast as she thinks they are. I had to reassure her that we are there to hold her hand every step of the way and when she is ready for her cheer squad to see her in real life she just has to let them know and they will be there with hugs and love. It seems like she is just like a little butterfly inside of a cocoon underneath all those bandages and I have seen many flying around over the last few weeks communicating with me that it is all going to be ok.

Thursday – Day 22 of Platypus ward

Our life has been put on pause and as I wander the house I see things just left as they were the weekend of the accident. Things that have been ignored and dismissed, as all our energy, has been spent with visits to the hospital and gathering supplies for H to keep her happy in her little hospital bubble. Slowly, I am getting to the stuff that needs to be done, like an appointment for a COVID booster for my son which is really important as well! As far as I am concerned with this point in time that pandemic is compartmentalised over there and I am present and here for my daughter’s healing.

Today, there was a dressing change where H went late into theatre so she came out at peak hour when I drove to the hospital to go and visit her. When I found her in her ward, she was covered in 6 blankets with a towel over the top of her head and laying flat with the nurse button thrown on top of her. I imagine when they wheeled her out of recovery she was still a bit groggy so they left her to rest. I arrived in time for dinner and she got to have her favourite dinner Mac and cheese, we asked the nurse if she could eat and all was good! She had fasted since breakfast so it was a good thing she ate something.

At the dressing change, everything went well and now the top of the right arm has a stretch bandage where we had a look at the skin graft and how the mesh donor skin was put into place and it is healing beautifully. We need to moisturise often with sorbolene and she will be getting a compression garment for the top of the arm. The other bandage which came off was the thigh where we saw skin grafted there as well as the donor locations. The donor locations look like a cheese grater has taken off the top layer of skin in the shape of a big rectangle. It is healing really well too, so there will be compression shorts to wear on the legs. The left arm under the wrist and the thumb and little finger were burnt and a graft was put on the wrist and it looks great so that may be a compression glove? The OT is in charge of the elbow down and the physio looks at the rest of the body.

The right arm and fingers are in bandages and out of the vacuum seal with the BTM doing really well and that arm will be grafted next Thursday. The neck has reduced bandages on it and the graft has taken well except for raw areas under the chin which is a bit patchy, so H still has to wear a collar (neck brace) to keep her neck stretched out like a heron. The face still has a little bit of infection on the cheeks and the forehead which are getting antibiotics regularly to knock it over. The infection is a nuisance because you cannot graft on infected skin, so she still has to wear the head bandage and she looks like a nun. All I need to add is a habit and she can take part in the Handmaids tale. The ears have healed very well and they just need an ointment and dressing change twice a day.

The good news is that H will be with us for a trial for a few days at home, this means that she can be at home but due to COVID she can only have minimal visitors. Currently, she is immunocompromised due to the medicines and her skin healing so we have to clean the house well due to infection. But we are very happy to have her with us and our family can be together again even just for a short time. She will be readmitted next Thursday for the right arm graft which needs to take on the skin and up to 2 weeks to heal from the experience on her body. Her medical team is super happy with her progress and for each day we work out logistics on what is happening. There is no forward planning here, as we are at the mercy of the hospital and H’s healing journey.

Friday – Day 23 of Platypus ward

The day finally came for Holly to leave the hospital – but it is just a teaser only until Thursday when she will be admitted again for skin graft surgery on the right hand. I got to the hospital and we were packing up the last of the stuff to take home, all the face care which includes paraffin and poly vis and sorbolene for moisturising the skin. Then we had to wait for the pharmacist to rock up with a bag full of drugs – it was like Christmas with the number of boxes in there! He then went through each one to explain what they did and to follow the instructions on each box. My hubby went straight to the pharmacy to get a pillbox and we organised them to help us both, it is so much but so worth it to have our daughter home with us! Finally, we were free after our drug tutorial with the pharmacist so we left Ward 417 for the last time to do one last thing before we left the hospital, which was to fix up her neck brace. As we were walking towards our exit all the nurses had organised themselves to say farewell to Holly, they lined up on either side of the hallway, clapped to her to say goodbye. She was so embarrassed by it all and red as a beetroot as she waved bye! The nurses are an incredible team and we are so grateful for their care with H. She even nominated one of her favourite nurses before she left for the nurse of the month! We still need to go back to the Platypus ward so I have to think of a gift to give to the amazing medical team.

Saturday – Day 1 of being at home

My goodness, what an amazing feeling it is not to have to go to the hospital today! We have been getting into the groove of the daily schedule with the medicines and the face care, so I made a spreadsheet so we all have something to refer to. We have to enjoy this short time together (before Thursday), so H arranged a couple of visits from friends for the weekend as she gets a bit tired and cannot do too much. She has a wheelchair with a high back to help her keep her neck up straight and it helps with eating at the dining table. H easily gets around and climbed the stairs to her room to chill out. For safety’s sake, the Drs recommended she stay downstairs in our room for now. So my hubby and I are camping in H’s room, for now, a small price to pay for having her back with us.

It has been a beautiful relaxing day not having to go to the hospital but we have made many trips to the pharmacy to get the anti-itch drugs and gloves for face care. We have to make sure everything is super sterile as there is already an infection on the face. She is enjoying her time with the cats and has got a bit frustrated with her exercises but she is doing them with a friend at the moment. So happy and relieved she is at home with us, the emotions are so mixed as we see the path ahead with all the meds and the future hospital visits and the exercises. Our lives are forever changed but we have our girl here with us getting healthy by the day!

Sunday – Day 2 of being at home

All I can say is that I need this time at home, away from the hospital as we have been separated from ourselves for the last month. Today was cat therapy, a long relaxing bath, exercise and meditation day with an incredible app my friend told me about called InsightTimer. The cats have been loving and amazing and enjoy all the pats while we chill out. As for H, she has enjoyed some time with her friend playing board games this arvo and getting into the swing of swallowing her medication in new and innovative ways, such as, taking a mouthful of pasta and eating her meds with it. I hope that is OK rather than taking it with water but we gotta get the medicine down one way or another! Our little schedule is going well and it is so good to have some peace today ✌️

Hopeful 5/52

Monday – Day 12 of Platypus ward

As the days go by the last two weeks has felt like a month has gone with so much to take in and feeling very discombobulated and out of routine. Hah, I feel just like that octopus up there! Anyway, Monday morning was a very busy time, then I was relieved of my shift I went to my myotherapist appointment for a chill-out massage and escape from reality. Here are today’s highlights:

  • got her teeth brushed
  • ate yoghurt for breakfast and started trying the hospital food of soup and pureed foods
  • ketamine line taken away and catheter out
  • has only one nasal gastric tube for a feed – which is amazing! This will slowly be dropped back to carry over at night so H can work up an appetite during the day
  • did face exercises and leg exercises and was planning to stand up this arvo with the physio
  • the good thing is that the pain meds are being reduced and she is being relinquished of all the tubes that were connected to her body so she can be free to wander around – which might mean a visit with friends downstairs!

The healing is going well each day and beneath the redness and blisters that disappear, I can see H’s face clearer each day. She is starting to get bored and clean out her email and then she will text friends, she might even be watching YouTube soon – which means she is really on the mend!!

Tuesday – Day 13 of Platypus ward

I need to work on the affirmations above but today started off a bit flat, angry and frustrated. After a Body Combat session, I released all frustration, watched a bit of YouTube, had a chat with my friend on the phone and enjoyed a lovely lunch and cuppa at home it was time to head on out to the hospital. One thing my friend said to me was to reframe the trips to the hospital towards a retreat with Holly. I need to enjoy the time I have with her there. It is funny, even though she is there resting, there is medical staff with her doing all sorts of things from physio to meds. Also because of COVID we hang out 1.5 metres away when anyone else is in the room. This means we retreat to the corner away from H, so no holding her free hand, so we have to grab the opportunity to chat with her when we can!

Damn COVID and masks all day, not a fun venture but today I took some sewing with me so I could pass the time crafting in the afternoon sun. Yes, the reframing does work and H was super tired today so she rested, texted friends and listened to her audiobook. The good stuff that happened today was:

  • she sat up on the edge of the bed, stood up and sat on a chair for 30 minutes – she said it was nice to see outside the window
  • can sit up for 15-20 mins
  • increasing the time between taking endone (her opiod pain med)
  • played the Lingo game on the hospital TV and won a jigsaw (unfortunately she cannot use it due to her hands in bandages)
  • watched SBS food and learned how to make dumplings
  • fed herself with her left hand and ate the hospital food of spaghetti sauce, potato, beans and ice cream (still only mushy food)
  • yelled at me and said I couldn’t bring dumplings for her at the hospital because she cannot eat them! (I told her I will save some for her for when she comes home)
  • Had a lovely jam session with her music therapist and played the ThumbJam app on the iPad – heres a recording of the track
  • Her face is healing really well and we can start seeing H through all the bandages

Wednesday – Day 14 of Platypus ward

Today was quite exciting as H got us and walked around the bed and got to see out the window at all the beautiful trees surrounding the hospital at Royal Park. My hubby and I had our weekly team meeting with the physio, OT, child life specialist, social worker, burns surgeon, plastic surgeon, nurse coordinator and the dietitian. The surgeon, physio and OT are so happy with H’s attitude and how motivated she is with her exercises and movement. Hopefully, with getting up and being able to sit up H will be able to meet her brother at the playground in the shade in a couple of weeks. She will have to be in the shade and away from the sun to keep her skin safe, according to her PT. Her brother will have to have a RAT and then he can spend time and see her in person, it has been nearly 3 weeks since they have seen each other. Then hopefully after she has had one visitor, she can have some more and see her friends.

H is now off ketamine, the drug that really helps with the body pain after burns and tonight she called us from the hospital to say she was in pain all over her body. I had been with her all afternoon and she was asking me to pat her (like a cat!) to help with the itchiness on her head and face where some of the burns are located. When I left she was getting some antihistamine medicine to help with the itchiness. I had come home and we had just had dinner and I was about to have a cuppa when we got a FaceTime call from H and she was really upset. My hubby has gone to spend the night with her at the hospital tonight as she is feeling really overwhelmed about what is happening to her.

H is coming to terms with the reality of what has happened at last and I told her to have a chat to her social worker as well to help with the trauma. For the last couple of weeks, she has been oblivious to what has been happening (I presume the drugs keeping her comfortable have a lot to do with this). Also, her medical staff keep her pretty busy during the day so she has a good sleep at night. Tonight was the night that she really needed us to be with her to help her get through the pain and the reality of what has happened and I am thankful that we live so close to the hospital that we could be with her to get her through. I just got a text from J that she is resting peacefully – thank goodness! Tomorrow it is back to theatre for a dressing change and another big afternoon when the next baby step will be revealed. I told her that there are so many people who love her and sending her healing messages, the best thing we can do is hold those positive thoughts to get through together.

Thursday – Day 15 of Platypus ward

Today was a dressing change day and I got into the hospital in time as a friend dropped me off to hang with H before she was wheeled off to theatre. I stayed with her while in the holding bay and then went all the way into the room where they put the needle in her arm and gave her a general anaesthetic to take off all the dressings and see what was healing. It was good to be able to be with her until she was sent off to sleep, she also had laughing gas to numb the pain as the doctors were finding veins on her arm and foot for the needles. Her time in theatre today was about 3.5 hours and then she went to recovery, where someone messed up the call to the parents and we were left hanging for another 3 hours?!? It was a busy day in hospital as always…

Well, there was good and bad news for the dressing change today and the good news is that the BTM on her arm is looking great and the legs and arms are healing well. H will have functioning fingers on both hands to text and email her mates and her right arm is on the mend. The hands will be in action and she can eat, drink and walk around. The bad news is that there was an infection in her ear and the face so the neck graft did not take. So due to the infection, she has to take a broad-spectrum antibiotic to get rid of the infection before they can graft the skin. With this hurdle H will have to go into theatre again on Monday for a head, face and neck redressing. Her ear will be dressed twice a day and ointment will be painted on her ears to clean up the infection. Funny thing, I did tell the nurses and the surgeon she had been complaining of ear pain since Friday, but then she just got more drugs for the pain and her bandages were cut a bit looser on Monday and that was it.

So the next baby step is to knock the infection away so the surgeon can regraft the neck where the skin can be taken from her leg or somewhere else on the body. That is really an important step before regrafting otherwise it will fail. In the meantime, H has asked for some of her faves from our dinner recipes, which is my vegan ramen. She cannot have the noodles yet, so I made her a miso broth which I will take to the hospital tomorrow to provide some well-needed home-cooked love and goodness in her body. It is so hard for me to see the hospital food and how unappealing it is for her. Now that I know I can take soup to her bedside, love from our kitchen will travel to her 🍜

Friday – Day 16 of Platypus ward

I got to the hospital today and it was only when I signed myself in I realised it was Friday! Every day is starting to look the same with going into the hospital and hanging out seeing who is with H. Today I got there and it was PT time, then we left the room for H to have some time with her social worker and then it was time for her teacher to visit her to do some school work for an hour. Finally, around 4pm we got to spend some time with each other and organise what she is ordering from the hospital menu. It is so much better now that she is on a high energy diet and can eat as many hot chips as she wants. We missed ordering dinner tonight but she was pleasantly surprised and she enjoyed roast chicken, veggies, a bread roll and butter and chocolate mousse for dessert. Looking at tonight’s offerings I have to say she has taken quite the step up from her bland pureed meals. Also, she enjoyed the miso I bought for her as well as the two dumplings she scoffed down with some soy sauce. It was the most amount of food she has eaten in 3 weeks, so hopefully, she feels ok in her tummy this evening!

I went to the health shop today and got a lovely bone broth which I added to the miso and it gave it a lovely depth of flavour. While I was there I found some carers bush flower essences for me to get through the rest of this time and the lovely lady at the stop gave me some tranquillity cream for bedtime for a good nights rest. Oh, the universe you are truly amazing 🙏

After all the dramas of the dressing change yesterday we are just taking it easy and enjoying hospital life until the Monday head and neck dressing change. Today’s highlights were non-stop:

  • H sat up in a wheelchair which she can use to get around and have visitors (she calls it the space ship)
  • She can eat anything she likes
  • We help with her care by massaging sorbolene cream on her hands 4 x a day
  • To have visitors she detaches from the IV and can stay in the wheelchair for about an hour and apparetnly there is a meerkat enclosure on the ground floor as well!
  • Only wears splints on her hands at night
  • The pain is in her right hand where the BTM is and where the most arm and hand damage is
  • H got up and walked around and sat down
  • All her fingers are free and she does finger exercises while watching SBS Food
  • The goal is for the nose tube to be out and to be eating everything
  • The infection is not in the cartliage, it is just a surface level infection – thank goodness!

When I got home and checked the mail today we got a bill from Ambulance Victoria for the airlift for over $11,000 – now there you go, that is what it costs for an emergency helicopter ride to the helipad on top of the hospital! Hopefully, we can claim some of it on our private health cover. So whenever you are thinking of an Ambulance subscription at $100 a year for a family, it seems to be worth the money!

It is nearly time for the weekend where it is very quiet at the hospital and is a good time to chill for H and to finally catch up with her brother after 3 weeks of not seeing him, that is something to look forward to!

Saturday – Day 17 of Platypus ward

Three weeks in the hospital today!!

Today was a big day with H’s first visit with her brother at the little area of the hospital where all the fast-food joints are. It was lovely to be out of the ward and be just out and about with the whole family together after 3 weeks!! I would have to say that is the hardest to have our H in hospital with the rest of us at home – we are all missing her here. Today’s visit went well but she was quite tired after it all and rested in the afternoon. The plan would be one visitor at the most each day as it is quite a bit to organise to get her on the wheelchair downstairs as she has a little vacuum sealing the bandage in her right arm. She managed a little bit of a walk to the aquarium to see the fishes with us but we had to stop at security as her brother was not allowed in (due to covid rules we have to get a special exemption?!?). We just gotta work with what we can do and that is meet in the public zones. Today the good things are:

  • her face is healing well and is doing mouth stretches to stretch out the skin from her eyes to her mouth up and down and sideways around the face – this is important for wide facial expressions
  • had a bit of a wash and had a change of clothes in the the shower and is wearing lovely new PJs instead of the hospital gown
  • enjoyed meat pies for dinner and pasta bolognaise for lunch – the hot chips were very disappointing, so they were cancelled from future meals!
  • the physio came and had a great chat about compression garments for the future to help with scar management, she may have to wear them for up to two years

Overall, we have to stay with that one day at a time mindset when we are losing track of what day it is. It will be fine for my hubby back at work next week to have some work routine. Then I will be on Uni holidays for 4 weeks and another 3 weeks off work at the kindergarten – so it is into the twilight zone for me for the upcoming weeks.

Sunday – Day 18 of Platypus ward

Today’s trip to the hospital was a planned rendezvous in the afternoon and an escape from the ward to the public area downstairs for H to meet up with her friend. It was a great afternoon to be away from the space where H chatted to her friend about what has been happening with the hospital stay and how they both miss each other. In the morning she also chatted to friends in California on a zoom call.

Being able to get around is such a great thing and H loves her spaceship (wheelchair as she calls it) as she has a helmet of bandages ready for her trips around the hospital. We went outside for the first time in 3 weeks but it was so windy everything was being blown around, she was afraid of being blown away. Plus the Ravens were having a grand old time of pulling the Maccas rubbish out of the bin looking for a stray chip. The other bonus is that H is so alert she can navigate around the iPad herself and we are getting her to do her own face exercises three times a day as well.

Listening to podcasts is a great way to pass the drive time to the hospital and this is the one that a friend recommended that I have been listening to this weekend it has helped with a shift in my mindset, it is so important for me at the moment. Thanks so much for the recommendation! Tomorrow is a dressing change for the head and neck and hopefully, the infection has been zapped away by the antibiotics!

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🌟 ❤️‍🩹

grateful 3/52

We witnessed the fragility of life on Friday when my daughter H was in a freak accident with a campfire. As we were relaxing on a Friday evening, I received a call that the rescue beacon was sent off and there was help on the way to a camp trip where my daughter was with her friend and her friend’s dad for the weekend. After pacing the house for a while, my daughter’s friends Dad called me to say that she had an accident with the campfire as it exploded and she caught fire. All I could say was, “how is she going?” He put her on the phone to me and she said, it hurts so much! At the time she had water being poured over her to keep her comfortable. While she was roasting marshmallows, she was wearing synthetic fabric joggers and a thermal and they do not mix well with fire!!

The ambulance and emergency services were called and she was soon taken away by a helicopter to a hospital back in Melbourne. When I got the call she was taken away without her phone or a way to notify us where she was going and I had to investigate a way to find out where the helicopter was. Finally, I found out from the search and rescue beacon people and we drove over to the hospital at 10pm to find her in the emergency department. We totally underestimated how bad the burns were going to be and it was a complete shock to us both to see her lying there with burns to her face, arms and leg. By the time we came she had been given pain medicine to help her get through to the next stage.

I am grateful to have my friend who looked after her until the emergency services came along and took her to the hospital. Once she was in hospital she was rushed to theatre to clean out the wounds and skin and then bandage her up for her recovery in the ICU ward. Since Saturday we have not been able to chat to her as she has a breathing tube, due to the swelling in her face and having to preserve her energy to heal. To see her all bandaged up was extremely confronting and as a parent you feel so helpless! We left the hospital in shock as to what to do… the only thing we can do at the moment is take it one day at a time.

I am going to use this space to extend on a journal to keep people up to date with how she is going. If anyone is wanting to help please consider a donation to the Royal Childrens Hospital Foundation. The hospital has been incredible in keeping our daughter comfortable from all the burns and the daily care she receives is something we truly appreciate.

The first 36 hours have consisted of sleepless nights, nightmares and anxiety.

Saturday – Day 1 of PICU (Paediatric Intensive Care Unit)

On Saturday morning we received a call from the surgeon at 3:30am to say all had gone well and she was bandaged up with holes just for her eyes and mouth. Her face has been so swollen her eyes are shut and her lips are blistered are swollen as well. To see her hooked up to multiple machines for drugs to keep her comfortable, a breathing tube to conserve her breaths, a tube in her nose for feeding and a catheter for toileting was the worst experience for any parent to go through. I left the hospital in tears and have been crying for most of the weekend. We have an incredible support base here with family and friends.

Sunday – Day 2 of PICU

We rode our bikes to the hospital to help with processing the heartbreak we are going through. It was a great visit when I read to her lots of messages from her friends and family and she responded with nods as she could hear our conversations. It felt good just to have those interactions with her. We spoke to an ICU nurse and she gave us a brief rundown of how things may progress with another trip to the theatre at the end of the week to check out the healing process and the state of the burns. From there it is observing how she is healing.

Monday – Day 3 of PICU

We went in and the nurse told us she had a bit of a rough night with vomiting from the pain meds, so she has been given some other medicine to help her that will not make her sick. Also, her feeding tube has changed to one that goes directly to her stomach. Today we spent time reading messages from loved ones to her, soon realising she was heavily sedated. A social worker had a chat to us to check in to see how we were doing and emphasised the importance of spending time with her no matter how long and taking it one day at a time. The recovery will depend on her path to healing as well. We said farewell to her and said that we loved her and we will be back tomorrow.

The household is missing her energy and the cats are looking for their little friend who pesters them. I miss my little chef in the kitchen. My hubby misses his crap television buddy. Waiting is the hardest thing but we know we have to be patient and send lots of healing energy to her ❤️

Tuesday – Day 4 of PICU

Today was another day of highs and lows. We got to the hospital and had to to a RAT to check if we are COVID free and then when we got to the ICU ward, H was surrounded by Drs, nurses and dentists who were about to extubate her and remove the breathing tube from her throat as she is breathing by herself. Then a strange thing happened – they found a pea in her throat and they did not want it to travel down to her lungs. The funny thing was that my husband and I said to each other, “she hates peas, what is a pea doing there?” Then I texted her camping friend and they had fried rice for dinner 😀 So the doctors had to fish out the pea and because the important thing was to get it out it and that created more pain in her throat so they decided to put the breathing tube back in again. She was heavily sedated again with this procedure but I still played her recordings of love from family and friends and she nodded to respond. So we continued to chat to her a bit more about flowers and a card that had come with a visit from her teacher and we told her about all the people who loved her and sent her healing energy. Eventually, she was resting and healing, a good place for her to be at the moment.

A highlight of today was seeing her doing AUSLAN to the nurse to get a drink which is funny because at the moment all her fluids are coming from her IV. At least H has learned AUSLAN and maybe we can practice it again in the hospital once she gets more movement in her hands. She loved that class so much when she was in primary school and her teacher really enjoyed her presence. The other good thing is that her swelling is going down on her eyes and mouth so that is progress with her recovery. Tomorrow is another day and with the circle of love surrounding her, I can see her healing journey moving along. I am so thankful for the wonderful, caring people that are in our lives who are helping us get through this horrible time! Today, when we got home there were more flowers with some wine and cheese to help us snack out from my favourite florist in Brunswick with love from our amazing friends, who are like our family in California.

Pic from https://www.facebook.com/aireysinletcfa

The amazing rescue team in the remote camping location landed their helicopter on the rocks to get H to the hospital ER as soon as humanly possible. Total gratitude to these incredible efforts 🙏 H’s teacher found this picture and showed it to us today, I am in awe of this rescue.

Wednesday – Day 5 of PICU

The journey to recovery is like riding your bike against the wind, it is going to be a hard slog but we will eventually get there.

Today we had a meeting the with care team – organised by the psychologist and we spoke to the burns specialist, ICU nurse coordinator and the ICU doctor. It was a hard hit of reality for the way forward. Tomorrow H is off to theatre to see how her healing is progressing and tomorrow afternoon I feel we will have a clearer picture of what lies ahead of us. We signed our consent form and she had a COVID test and is ready to go for another operation and clean up tomorrow morning. What we need to be aware of is that the road ahead is going to be us spending way more time in the hospital with her on her path to recovery. The prognosis of the burns on her face and how they are healing will indicate the time in the hospital. The burns specialist mentioned that we will be needed to help her with tasks and be by her side in the ward. At the moment in ICU, we only stay for a short time because she is sedated for the tube in her throat and the pain of the burns – so we feel that she just needs to rest.

Today she responded briefly before she was off into dreamland, the swelling is down on her face and she can open one eye. That was a really good thing as her eyes have been swollen shut for the last few days. Hopefully, her other eye can open tomorrow. Maybe her breathing tube will be out too and she can chat to us with a gravelly voice. Each day we hear the news that things are going forward but realising what the road ahead looks like it will be a huge amount of time spent in the hospital. Thank goodness we can ride our bikes there, today I had the energy to ride there against the wind as I could not wait to see our girl but on the way back my legs were sore and even though we had a tailwind I felt deflated.

I think this will be what life is going to be like for us for the next few weeks, an emotional rollercoaster where one day is great and the next day sucks! All I know it is important to stay positive and strong to get through this time in our lives. There will be good days and there will be bad days and I think today was a bad day. I feel so helpless seeing her in there but I know she is in good care and one day everything will be alright again, though we will not ever be the same going through this traumatic time together as a family. And our darling H will need to be supported as much as possible going forward as her future is forever changed.

Thursday – Day 1 of Platypus ward – moved out of ICU

Exciting things happened today but we also had the realisation that our lives are permanently changed – H’s life is going to be different and it will be important to have people around us who are accepting of what she will look like after this incident. She will be permanently scarred for the rest of her life on her face and the surgeons can work with her hands to get them to be as functional as possible. There will be a lot of therapy involved and beauty is only skin deep, she will still be our stong willed H on the inside.

This is information from the burns surgeons today:

She has multiple 3rd-degree burns on her face and hands will need skin grafts on her hands this Monday and on her face on Thursday.
She will have lifelong scarring and she will have to wear compression fabric on her body for the scarred skin. The burns on her neck could be a concern as she may not be able to have proper movement of her neck skin area but they are working with that area now to make sure it is stretching as it is growing back. The area around the eyes might be a concern as she shut her eyes super tightly in the fire, which saved her from being blind. Her nose is a 3rd-degree burn and the plastic surgeons will consult with the burn surgeons to do what they can for her at this crucial stage. Her burns around the right wrist are 3rd degree and will need grafting and she also has a splint to heal the webbing between the thumb and first finger.

There were positives today where:

H is out of ICU and she has the ability to move her arms and has the knowledge to self administer morphine for the pain in her body.
She can see us clearly with one eye and is breathing by herself – though she has a bit of a cough from the breathing tube.
Two strong fingers on her left hand can do things but she doesn’t want to look at her phone as only one eye is active and she was resting. Can say one word or so through her mouth and the tube is out of her throat – so good for her. Her hair is brushed and in a braid thanks to the people in theatre. She asked for water and we fed it to her with a spoon. She can interact with us but is in pain still. Responds by nodding and shrugging her shoulders. Also, she did sit up on the edge of the bed with the physiotherapist today.

It was a whirlwind of emotions today and all I said to my husband as we left the ward was FUCK! And then I burst into tears on the way to the car, the journey is going to be long and we all need to stick together as a family and support each other through this. The most important thing is conserving our energy for our baby (teen) girl.

Friday – Day 2 of Platypus ward

Today we were at the hospital bright and early to chat with the burns surgeon and the team supporting H. We got to the hospital before 8am and we stayed there till 4pm and it was a very long exhausting day! As I left the ward to eat lunch I came across a pair of crows who left a feather behind and according to the Wurundjeri people of the Kulin nation (where Melbourne is located) Waa the crow is an ancestral being in the Dreamtime story of Bunji and Waa (the protector) “bringing fire to mankind” and the crow’s feathers became black from the coals burning their feathers. I found a lovely story that highlights Waa’s role in this creation story. According to animal omens, a crow can also represent change and transformation for all of us. I am holding onto whatever hope I see in the world around us to heal our darling girl and I believe that we are all a part of this universe and nature sends us messages and all we need to do is listen out for them.

Todays Positives in the Platypus ward are:

  • H stood up with the physio twice.
  • Can communicate with thumbs up and is responding to the medical team and us with small whispers and hand gestures for drinking water.
  • Incredible medical team supporting her recovery – ICU doctors checked up on her, the burns surgeons see her in the morning, physio and occupational therapy to help her movement, nurse on duty – Hannah was super helpful and talking her through every procedure, I just loved seeing this because being constantly prodded and poked can be very ovewhelming.
  • H fatigues easily and rests after each session with the physio or check up.
  • Squeezing our hands as much as she can, so I feel that strength in her body.
  • H is doing facial exercises and stretching her lips with a swab on either sideof her mouth to make sure the skin is not going to contracture on itself.
  • H is asking us for water and drinking sips through a spoon, it is like feeding a little bird.

The Burns surgeon gave us the low down on how the skin grafts are happening next week:

  • Her burns surgeon is a specialist in scarring – this gives me reassurance that she is in the best place for this healing journey.
  • The skin graft for her hands will be taken from the right leg to a full thickness graft on her hands it will take time to heal where the surgeons will monitor how the graft heals over her burns as it is really imporant for movement in these sensitive areas.
  • Thursday will do the skin graft on her face and collect the skin from her other leg – the instrument looks like a cheese grater and apparently the feeling of the removal of the skin is like a graze when you stack it off your bike. The healing will be itchy for her so they will be providing anti itch oral meds to her to get through until the skin on her legs heal.
  • The healing will take a while and maybe up to three weeks until she can come home, that is, if she is healing well – she can come home with the dressings on and we can look after her here. Still it is important for us to be comfortable and agree with the hospital when that decision is made. Also, H has to feel comfortable with her healing and the pain relief meds she is taking as well.

Overall H’s progress is phenomenal and she is doing so well and is conscious and interacting well with everyone. She is on the mend and it will be a long rehabilitation process and we will get there one day at a time. Each day we see progress and that is a good thing.

Saturday – Day 3 of Platypus ward

We are now 7 days in the hospital and it has been the longest week of my life!! Going in and out of the hospital is so exhausting. H is still resting a lot so I need to have something to keep me occupied to pass the time. Then H knocks her pulse monitor against the side of the bed to get attention. Her voice is still a whisper but she can respond in smaller sentences. She is really coming to the awareness of how much the fire has done to her body and she communicated to the nurse, as she tapped the bed rail with her finger to indicate her pain level was at 6.

Today I saw a butterfly fly up past the 4th-floor window and then as my friend was dropping over some love and goodness we found heaps of little butterflies on the nature strip that have been flying around our garden since she went into the hospital. Today was nothing but positives:

  • H was batting my hand away as I was gently touching her head, it was as if I was annoying her.
  • She thought of a way to communicate to the people around her with her pulse monitor and tapping.
  • Drinking apple juice and water using a straw.
  • She sat up in a chair to be weighed today with the physio team.
  • Doing her face exercises with the emoji faces with my hubby on the morning shift.
  • Talking in a whisper voice and telling me to skip tracks she did not like on the Spotify playlist.

H is so much better today and her little warrior spirit is out in force as I left her she held my hand and I asked her if she was scared and she said she felt safe. Today she was sleeping and resting to equal lots of healing. Tomorrow is another day and we can see how she will progress in her healing journey. I did tell her she smelt like a BBQ as I have been wearing my mask whenever I got close to her, maybe it is the skin healing or it is the bandages? I think this time in the hospital is wearing thin but we still have a long, long way to go!!!

Grateful 2/52

With the looming covid cases in our state, our holiday plans have gone haywire and we have just gone with the flow. I contacted my friend to catch up as she moved away from Melbourne to build a house in regional Victoria. As we were free, we took an overnighter to her place and spent some time checking out the Ballarat International Foto Bienalle in the streets and in pop up shops when we arrived. It was so much fun to have some time together checking out the photography and the Linda McCartney collection as the highlight.

The morning we left we went down to Lake Wendouree for a wander and right by the lake we found my favourite trees – the giant sequoia at the botanical gardens. Afterwards, we visited my friend’s house build in progress on over 3 acres, it is just exciting to see it coming together! I remember walking through our house when the frame was up and the foundation down, so not long to go for them. Fingers crossed they can get the supplies needed to wrap it up.

So grateful for our little Subaru to take us away on little trips from our house and visit friends!

Grateful 1/52

Well, the year got off to a good time with lots of fun things to do like catch up with family and friends and eat lots. This is a delicious brunch from The Boot Factory – a local cafe in Coburg which I love! We met some friends to chat about camping later in the month. This is a mint avocado deliciousness on wholewheat bread, so good! As this is going to be a pretty big year with Uni and work I feel that I wanted to do something different in the blog space but I think I will be grateful as it is a good habit to practice.

It has been a busy first week as it was back to Uni with getting the two team assignments ready. One down and one to go, thank goodness! The days have been full with my exercise, study and getting a few little tasks out of the way, such as organising spaces. So yes I am thankful to have this time with the children and not go back to work until they go back to school!

Grateful 52/52

The end of another year and what a year it was! My little cat Apricot in this pic really sums up the time we have had this year with slowing down and taking time to appreciate what we have around us. Time to look at the clouds in the sky, the bees on the flowers and the butterflies flying around. This last week was a wonderful way to complete the year by catching up on Uni studies and also enjoying time out eating with friends and family. I am definitely grateful for the time this week to do the things I have wanted to do at a way slower pace. It is important for me not to get sucked into the craziness deadline that is Christmas day and go shopping. I am at a place in life where I do not need more stuff, just experiences. Still, I really enjoyed the very useful presents our family and friends bought me this year, always the thoughtfulness that goes into a gift that matters. I am truly thankful for the beautiful people we have in our lives.