Just relaxing with friends for a cuppa here and there. Working on my assignment to finish the draft. H was doing work from the homeschool curriculum and it is so good now as she has a list of projects she would like to do when she has done the required work of English, Maths and another subject.
My morning of kinesiology, back home for a little bit of study. Later in the evening, I caught up with some work friends for dinner.
Friday, Satuday, Sunday
H had a kinesiology appointment on Friday afternoon and it was an interesting time for her. I enjoyed seeing her being cared for in a different way that takes care of her holistically. Movie night with the family together at long last! As my son is too busy working each night at the pizza joint over the school holidays.
Saturday – CPR course for work in the morning and catching up on Uni work in the arvo.
Sunday – family catchup day with my sister in law who made this amazing pavlova and it was so good to catch up as we had not seen each other property for over 3 months! That was since H had the accident.
Another week begins and this time it is the school holidays and we are not going anywhere as H needs to go to the clinic each week. So there’s another wasted opportunity to destress with the family. Instead, we are staying here and H is having her friends over and my son is out and about with his buddies going to see a movie in the city or playing games online as usual. We will be out to see our family (30 mins away) over the Easter break so that is something to look forward to.
I have had to organise all the resources for homeschooling. I have had to get myself in check so I am not running around at the last minute gathering stuff. I have these two weeks away from work but I still have to study as I am behind a week. I am hoping that I can catch up and start my assignment. Now I am at the point in my degree that I just want to get these units done so I can be DONE! Anyway, I have a binder for homeschool so I will see how that keeps me on task with what I need to do, plus my teacher planning diary was empty so that is what I am using for H each week with what she needs to complete. There are always little things to do that take time but it is worth it to make sure everything is organised and accessible for the whole family.
It is a new week and time to get back into the flow of everything again without disturbances!
Tuesday – a study day (image above a collage I made at my work PD representing the Merri Creek)
Did not do much except doing some groceries and kitchen cupboard and food organisation. Plus, I had to catch up on my studies as I knew Wednesday was going to be a right off with going to the hospital.
Wednesday – Burns clinic at 11:50am
This week we got to meet Associate Professor Warwick Teague whose name was written on all of H’s hospital paperwork. That was the highlight of the day as I shared with him that I read the info on his research at the RCH. H was seen by her surgeon fellow, her OT, physio and a nurse who helped with the dressings on her legs. So according to the staff there she is doing very well but she is at a critical stage of her healing where the focus is on stretching the skin on her face and using the pressure garments 23 hours a day to prevent the scars from getting thicker. The other good thing is that we don’t have to go back to the clinic for another 3 weeks! We still have to go to the hospital weekly for physio exercises though by request of her surgeon, so yeah we will still be making weekly visits!!!!
H also had an orthotics appointment with Meleta, who organised her 3D printed face mask. H prefers that one over the balaclava but she still has to wear the balaclava to flatten the scars on her neck. Meleta was pretty happy with how it turned out and I gave her feedback to secure the straps by sewing them in place in future. Unfortunately, the research for the masks is not too good as the comparison with the other mask made with plaster was too ill-fitting so they could not do a proper analysis of both masks. Then we were out of there as soon as we could, these appointments really do zap energy from you!
Thursday – family movie night at the drive-in 6:45 pm – Sonic the hedgehog 2 (not my choice!)
Having spent the morning exercising and going to collect hot cross buns from the cat shelters fundraiser I made it to my myotherapist to sort out the pain in my lower back. In the arvo, I came home and checked in on H and she was cleaning out her room. I was so impressed that she had the energy to get up and about and decorate her room beautifully, our H girl is coming back to us. This was the anniversary of 3 months after the accident! She also said that after speaking to her counsellor she was going to make a stop motion film with her stuffed animals, I was so thrilled! It makes my heart sing to see H interact with us again in positive ways, she is now seeing the benefits of home school and now wants to do a research project as well. This is all on her own (well she has been chatting to her friend about it) but I am so happy to hear that she is keen to learn and can see the value of self-directed learning and not having to learn via the traditional system of school periods of 45 mins to an hour – boo!! As a teacher, this makes me so happy as I am a keen supporter of progressive education.
Friday – Study day
Good Friday and what a good Friday it was! My daughter is back with us and she was talking to me today about what she is planning to do for school and that we need to get a weekly planner. I was up early did my meditation and exercise and got to studying. I have to write an essay so I had to do all my readings and notes so I can start writing about “Why is there confusion in early childhood leadership?” I created my essay plan so I can stay on topic when I am reading but when I am researching that is when I fall through too many rabbit holes. So I stuck my essay plan on the wall to keep me on the right path.
Saturday, Sunday and Monday – writing an essay
Finally, I had the brain space to focus on writing a draft for my assignment due the first week of May. H was having a birthday sleepover with her friend and had a great time out in a new environment. All in all, we did not have a trip away over easter, we caught up on stuff and relaxed.
I enjoyed some time out with a friend who I haven’t seen in ages and enjoyed brunch at a super cool bakery. As the whole fam likes bread we found this amazing Turkish flatbread to bring home to snack on. Later in the evening, for dinner, we enjoyed some Sri Lankan food that my family bought us as a birthday surprise from my Uncles shop in the east of Melbourne – Curry and Chips. To chill out we watched some crap Aussie romance film on Stan. A very low key birthday but very special in to be with people I love!
Tuesday – out and about with my son for PST conferences
So good to hear that my son is doing so well with his art course at his new school. He has blossomed as a young adult and his artwork is incredible! He is so excited to draw and learn and improve his illustration skills. I really can see that when the education environment fits the student there is no stopping them. For H, we had a conversation about planning for home education and that is the way we will go until the end of the year as she really needs to get her strength back and get back into learning her own way. She said that she is looking forward to learning interesting things at home. We have a maths tutor in place to get her foundational skills happening and build up her confidence again. The rest of the subjects will be an online curriculum called EUKA which speaks to me as a teacher, I love it! Student-led learning is a great way to go but for now, this is a structured curriculum aligning with the Vic curriculum so if we decide to go back she will feel good about it. The good thing about home school is that you don’t even have to align to curriculum and you can follow your child’s interests to hit key learning areas. For now, as she has experienced a lot of trauma she can see what’s out there and who knows interest might grow in something she reads about.
Wednesday – clinic appointment
Today was a busy day in the clinic checking out the healing taking place on all the grafts on the face and arm. Some areas like the upper arm are healing really well and that is what the specialists are aiming for. The massive skin graft on the right arm is slowly getting there with silicone and a pressure garment and the left hand is improving as well. Patience is key for healing the skin. H is doing well with the donor spots on her legs and no infection – thank goodness and the scar from the burn is healing there too. So she has a bandage that can get wet which means that she can have a full shower at home for the first time in 3 weeks! The neck collar still has to be worn due to keeping the neck skin stretched as it heals.
As it turned out we had a second appointment at the hospital this afternoon that we did not find out about until we were at the hospital! It was 3 hours away at the time so we just came home had lunch and I enjoyed a cup of tea to relax and keep myself fully protected from any negative energy. The meditation I did last night with white light really helped me today as there is so much pain and heartache at the hospital. Anyway, the second appointment was for H’s clear facemask which is 3D printed. This is where I see technology shine! The 3D imaging from the first clinic visit was transformed into a mask that flattens the grafts on her face. She is really happy with it. They also had another one that was created in “old school style” of plaster of Paris on the face under general anaesthetic which did not fit so well at all. We agreed to share the research on the differences between the technology of old and new so our appointment ended in a photographic studio with H getting her picture taken so doctors can see how incredible this new technology is! H is pretty excited about this mask as I could hear it in her voice when she said I won’t look like a bank robber anymore!
Well, that is it for me today, I will eat and tonight I will float away. Goodnight!
Thursday – the decision to homeschool
As we were debating about what to do with the rest of the year and H’s healing we decided to homeschool. This was due to many factors and the number one was self-paced learning in a consistent manner. H has so much to do with her physio exercises, eating properly and taking meds throughout the day that it would be a very disjointed time for her to manage in a structured mainstream curriculum. We all felt – H included, that it was best to stay home and heal and fulfil the social duties with her friends by going to the park or meeting after school/weekends. We went to the school this afternoon and informed the staff of our application to the VRQA and once we have the OK we will gather the exit paperwork required from her high school. After our meeting H met her friends and went down to 7 Eleven for a Slurpee with her friends and hung out. So there you go, socialising with peers – done!
Friday – A professional development (PD) day with my work
It was my first time seeing my work friends since we finished work end of last year as I have not gone back at all due to H’s accident. My managers have been incredibly supportive of what we have been going through. We had a wonderful PD session with the Groupwork Centre and here is a beautiful metaphor to share that you always need your “wise one” in charge when dealing with difficult emotions and/or people. The circles consist of micro skills to apply when working within challenging situations. The day ended with a beautiful meditation by one of the staff from another kindergarten she shared cards with us to meditate on and mine was “Powerful”, I need to harness that energy to get through the rest of the year. Thank goodness my exercise practice of body combat is helping me get there.
Saturday – Hamilton matinee
It is amazing and the Australian cast did a wonderful job. This is my second time seeing this show live, my first time was in San Francisco. This old theatre needs a bit of love and a renovation as I felt a bit too close for comfort with my neighbouring seats! Especially in the times of Covid I put my little bubble of protection around me and enjoyed the show.
Sunday – relaxing at last
It was time to do some study and catch up on homeschool prep for the week. H was building a house in Minecraft which is pretty cool! There’s a little bit of organisation to do but as I have experience as a teacher, it is all a matter of gathering the resources you need and discussing with H how the week will look with English and Maths at the beginning of the day and then other fun subjects in the arvo. Homeschool is pretty flexible, so we are all thankful for that! One less stress is always a good thing!!
I awoke to the sound of gushing water outside where a mains pipe had burst which meant that our water was off and we couldn’t have a shower and had to scrounge around for water to make a cup of tea. The water was off for the whole day! Whilst I was trying to work out what to do, I got a call from the hospital – I know that number now when it comes up on my phone!! It was the physio to say that the balaclava had come in so H can come on in to try it on. It is a full head garment with holes for the eyes, nose and mouth (the ears were cut out with scissors). H wore it home on the car ride home and it was pretty uncomfortable after 30 minutes because it is so tight on the face . The plan is to wear it for 23 hours a day! As we were there, the physio took some photos with a measuring tape in the shot to show the makers of the balaclava measurements to make it fit a bit more comfortably.
Tuesday at home
Quite a mellow day, as I went to acupuncture and then came home relaxed. The feeling of driving after acupuncture at the right speed limit is pretty amazing. I got a call from the teacher from the hospital in the afternoon and we went through the transition back to school and it is a huge list of things to do! After I got off the phone with her I thought of home education, a few families in CA used to homeschool before covid made it popular!! I did a little bit of research and from an educational point of view it looks amazing and from H’s healing and well-being it would be so good for her. That way she can self pace the learning during the day and take breaks when she wants to, plus do her exercises, take time out to take her medicine and eat a proper lunch. The other bonus is that she does not have to wear a face mask over the balaclava to prevent her from getting covid. Oh yes there is still a pandemic out there and she is immuno compromised and the burns team want her to go back to school, no thank you!
Wednesday – clinic day at the hospital!
It was H’s birthday on Wednesday and she had a clinic visit first thing in the morning – whoo hoo! It was a dressing change and the doctors and nurses sang happy birthday and gave her a lovely gift. The clown doctor came in and was pretty relaxed just talking about the chickens in his pocket and sang happy birthday softly on his ukelele. All the dressings were down and H still has to stay on antibiotics as the thigh donor spot had staf bacteria growing on it. Just when we thought she was getting back on track with her gut microbiome then BOOM all the good gut bacteria are annihilated again! It was a very low key birthday for her for the rest of the day.
I came home from the hospital as the drs had steam rolled my thoughts on home education stating that it is important for her to socialise in the world around her and to not make decisions on how she looks. Well no, the first thing that came to mind for me is how inconsistent her learning will be once she goes back to school starting with multiple supports for her – beginning with staged return with one class a day, then out Wednesday morning for clinic, no PE or contact sports, she has to put sunscreen on before going outside, needs a key person from the well being team or an adult she trusts at school, safe place for a break (a pass out system), needs a high back chair or sit at the back of the room for her to rest her head, has to prepare her peers for her appearance with a Q&A session, a dedicated space for her and her friends, short visits to classes she enjoys as she builds up relationships with peers and teachers and there will be no pressure just small steps. To me, this is a huge ask for a public school because even just asking for extra work from 3 teachers they cannot even follow through that request. I am just sensing it will be a complete mess because I work in education and teachers in general are pretty much over worked and seriously low on time.
I have spoken to H and she will give it a trial next week and then we will see what she thinks. I have written up her lesson plan for the week as I have found a great resource aligning with the victorian curriculum. But as I discovered if you choose to home educate your child you do not even have to hit curriculum targets! The most important thing is to target key learning areas and write a plan for the learning for the year on what you will do with your child. I am pretty inspired by home education but as H is a very routine and structured learner, the pre packaged programs are the way to go. The other bonus you do not have to be a teacher, but it is helpful for me looking through the curriculum options. It is a big wide world out there in education and mainstream is a big part of it but it is a very traditional path. The importance of creating a love of learning is key as I have seen in my son who left high school to follow something he loves and is so happy and enthusiastic in his learning journey.
Thursday – chat with a counsellor
We are lucky to have found a teen counsellor for H to talk to she happens to be from the San Francisco Bay area as well which is just incredible. The video call went well and H is going to have regular check-in sessions with her and practice art therapy which will be wonderful. I researched homeschooling options and chatted to the VRQA and have a plan of action. We will see how her home education pans out next week before I put the application in, H has to see if it works for her. She is already socialising with her friends online and in-person so that box is ticked for the doctors. To her the peers in the class are whatever, so I am hoping all works out so she can heal in a relaxed environment at home.
Organising home school options and studying for me.
Saturday and Sunday
H was socialising and had a sleepover with her good friend who has supported her through this. It was so good to see her on Sunday after spending time away from us and enjoying herself. She knows what to do with her meds and exercises and she is great at routine, so no worries when she asked to go and stay. H’s spirits had lifted having some independence again and getting back into the swing of normal – whatever that looks like these days!
Nothing exciting to report except that I have reduced my work hours and am going to do one subject at Uni. My work offered me time to cut back my hours because of the traumatic situation our family is going through. So I decided on looking after 3-year-old children for just over 6 hours a week and to do something that matters to me, which is getting through my units for Uni. I only have 3 subjects and 2 placements to go so I am looking forward to graduating hopefully soon!
Tomorrow is clinic dressing change day and I have had to chase up the hospital to get our appointment confirmed. Finally, we did and it is good to go, so hopefully, we will see lots of healed skin and maybe some more pressure garments this week. It is all such a surprise when we go to the clinic and I better pack the bag of splints, pressure garments and other items the hospital needs to look at on H. Plus I definitely need a book to read to pass the time away until we are seen by the burns team. Oh no, the clown doctors – that is stuff nightmares are made from!
Wednesday – the weekly clinic visit
We got to the hospital just in time for our appointment at 10:10am. After we checked in, we went to check out the cute meerkats hanging out in the sunshine. Then the text came through that we were ready to go into a room, craziness they were on time this week. We went in and everyone was ready to go and it was so exciting to see them all get into action. This week was a big one with all the dressings being taken down and redressed. First was the face and the surgeon asked H if she wanted to look at her face for the first time after the accident. She grabbed a phone and had a look and to our surprise (myself and the social worker) she was very stoic and said, “yeah it is how I imagined”. No emotions, nothing. Now because the skin grafts are healing the dressings were taking down completely. So no dressings on the head and she has a number 1 haircut and lots of grafts on her cheeks and forehead where we have to put silicone to flatten the scars. Next week she will be getting a pressure balaclava to wear for at least 2 years. The balaclava will just show her eyes, mouth, ears and will have breathing holes for the nose. Her neck was a bit of a concern for the surgeon and she mentined the skin is getting a bit thick from the grafts and we have to watch out for contracture which means that the skin will get tight beneath the neck and restrict movement. H does her exercises daily to help and she is also wearing silicon around her neck with a neck collar to keep her neck stretched out. All of this is going to continue for the time being.
Next they took down the bandages on the right arm where she had to regrow cellular structure in her arm so the skin could be grafted upon. The skin graft is enormous and extends from the back of the hand to just below the elbow. It has healed well and now she just needs to moisturise the hand and wear a long glove from her grafted fingers to her elbow. The upper arm is healing well where the skin graft is and she has to wear silicone and her pressure garment there as well. The left hand where she has a skin graft on her wrist is being flatted by the pressure glove and now she has silicon to flatten the scar of the graft.
After the arms the nurse took down the dressings on her thighs. She has a large skin graft on her right thigh and the rest of her thigh is where she had the donor skin taken from. The left thigh is all donor skin and the nurse took a swab for infection. The thigh was bleeding and did not look too good at all. The surgeon said to dress both the thighs until next week and as of Friday night we found out the thigh is infected so H is on another dose of antibiotics.
We went to the physio afterwards to measure for the balaclava and check out the movement of the neck and she showed us how to care for the face without all the dressings. H has silicon all over her face that we have had to cut out and make a patchwork over all the skin grafts. Finally the clinic session was over and we had the social worker in with us and afterwards we had a conversation about returning to school and life once the pressure garments were on. The surgeon is pretty keen for H to get back to some “kind of normal” hopefully her resilient nature will her her get there. We had meds to get so I left H with the social worker to have a chat. H and social worker soon returned and then H and I hung around the pharmacy to get the lower dose of drugs (she has to be weaned off the nerve blocker drugs she has had from the beginning) and get out of the hospital. Every Wednesday is our weekly clinic with the burns team, I do hope it is as efficient as it was this week for our future visits – we will see.
Thursday, Friday and Saturday – a visit from Aunty who lives at the Sunshine Coast
Yes, we are minimising visitors but when my sisted planned a trip because she was so worried about her niece – we were happy! I asked my sister to do a RAT test before hanging out with H and all was good. We enjoyed our time together and had dinner and chatted before H got tired on Wednesday. Thursday I went to CERES and enjoyed some sister time and we went out for lunch. Dinner was lots of fun as Aunty had bought with her a great game called Ramen Fury and it was the first time in months that I have seen my daughter smile and laugh. This made my heart sing and I was so happy, it was a special moment that I will treasure for a long while because we have not felt joy as a family for months! Being present in moments like this make you really appreciate that the time you have together is something to be grateful for and it was even better to have my sister with me having fun with us as well.
Monday – Labour Day, a public holiday in Melbourne
H has been home for a week today – yay!!
Today was not a rest day for the gardeners, my son and I were up nice and early getting ready to go to the kinder to share the joy of wonderful soil. The above pic is a wicking bed that is similar to what we set up in our little garden – they save so much water and the plants love them! This bed at the kindergarten is ready to start planting with zoo poo in the veggie soil mix. When we got home H was on a mission to bake pies for Pi Day with her friend in California. So her brother helped her in the kitchen to make pecan and mixed berry pies, they had so much fun! I loved hearing the laughter in the house again while I was doing the garden clean up around the place!
Tomorrow is an afternoon in the hospital again for H as she has to get a mask made for scar management using plaster of Paris smothered all over her face, take out the braces that the hospital put in for the breathing tube and get a dressing change while she is under general anaesthetic. Hopefully, it should only take a couple of hours and we can take her home from recovery late afternoon. I am going prepared with a book to chill out as I have had quite a busy weekend as my body hurts from all the digging and lifting – gardening sure is a great workout!
Tuesday – The whole afternoon in surgery as an outpatient
We were told to arrive at 12pm to check in with the admissions nurse for braces removal, taking a mould of the face for a full face mask and a dressing change. We got in and H was weighed and she is now at 42 kg, which means she has put on some weight after being at home for the week. I was so happy to see this, as her body has been using all her energy to heal. We then went to the consultation room with the nurse to get a covid test and answer a bunch of questions before we were taken to the holding bay for surgery. At the holding bay, we sat and watched SBS food in between chatting to anaesthetists and nurses waiting for the time to go into surgery which was 1:30pm. Then it was 1:25pm and a doctor comes to ask for the fifth time for the consent form. To which we responded it hasn’t been printed out yet. For surgery, it is always the consent form everyone is asking for and it is not until someone accesses it from the depths of the computer and physically prints it out for a signature and then something can happen!
I had a few errands to do as I waited in the hospital I needed to take the wheelchair back as well as enjoy a tailgate lunch party for one in the back of my car! I also needed to take back the visitor card to the platypus ward plus I went to the little hospital supermarket and found some cheese and rice crackers so H could eat something as she was fasting all day! Afterwards, I had a short stint outside with some overcast clouds before I headed back in again and sign a consent form for the physio for the photos that they took in surgery. Who knows, H’s face will be in some journal article in the future? I thought H would have finished and by the time I got called by the recovery nurse, it was close to 4pm. Then your day is nearly done and that is the timewarp of the hospital.
H ate some food and had a aloe drink while we listened to the cries of many young children coming out of surgery, my head was reeling and I had to drive home in peak hour traffic. So we waited and waited until we could be released which seemed like forever. Finally, it was time to leave and we hightailed it out of there. I got home and my energy was zapped, as the hospital is like a vampire full of sick children so I do need to generate a force field around me when I go there. In the evening H was itchy all over and she said it felt like poison ivy all over her skin. The doctors have given her antihistamines to help but sometimes it is so overwhelming and uncomfortable, especially on humid evenings. Eventually, H got to sleep peacefully to heal her injured body.
Wednesday, Thursday and Friday at home
This image says it all for all of us.
I enjoyed a float therapy session on Wednesday night and Thursday I finally found an optometrist that can support me with my stigmatism and pellucid marginal degeneration. My other optometrist asked me to have a glaucoma field test. When I had to do this, I researched what it was and it made me so upset that I could be going blind! Great, now what next?!? According to my new optometrist, the place I went to does the tests on random clients just to get money back from the government. Thank goodness the local Good Karma network recommended this wonderful optometrist who totally understood why I needed a constant professional to monitor my eyesight each year.
In between appointments cooking has been a priority, as well as meditation and catching up on reading. The days go by at a lovely pace and it is good to have the time to nurture the family with good food again. One thing I did realise is that it is really important to exercise to release the energy that needs to get out. I am still very upset at what has happened to our family.
Saturday and Sunday at home
Being in our own isolation bubble has been good as we finally got this jigsaw finished that H won at the hospital. Actually, my hubby completed it at long last, I don’t think any of us had any input whatsoever the second time around. It seems like every second person has covid and we are just staying home to be safe for H. There is lots of baking and cooking happening in our kitchen at the moment and it is so good! As H spent most of the weekend chatting with her friend in CA and baking cookies.
As it turned out after H’s burns top to toe burns bath today it was her very last day in the hospital! H is now home and with us and it was the first time in weeks we have had dinner together as a family so we made pie and salad with avocado. If I had been prepared it would have been H’s favourite smoked salmon pie!! She ate well and before dinner, she had some cheese and biscuits and polished off a chunk of Camembert cheese with her dad and brother.
I thank everyone in Australia and overseas for their support through this time but this journey is far from over, the hospital and skin grafts were just the beginning. Her surgeon says we need to get ready for the next phase of healing and we have a long road ahead of us which will be a good couple of years and beyond. She is still covered in bandages on her head, her arm and thighs and I have to be really careful when moisturising all the skin grafts. Her surgeon said to cut her long fingernails today in case she accidentally scratched herself and undid all the amazing work they have done.
There were a lot of waiting and goodbyes to the team who have looked after H beginning with her surgeon, her physio and OT, her dietician, the burns coordinator (her first day back from holidays!), the nurse coordinator of the Platypus ward, the pharmacist, the ward clerk and all the nurses clapped her out the hallway all said goodbye for the very last time. I said to H I have kept you safe and away from hospitals for 13 years and I do not want you to come back anytime soon! But actually, we will be back on Wednesday to go to the clinic for a dressing change with the burns – which will be weekly for the time being.
Now that she is home we are requesting no visitors as she needs to rest and heal until her immune system is back on track again. The last thing H needs at the moment is Covid or anything else. We also need our space as a family to heal together, so for all the local people who want to visit please respect our wishes and communicate with H via text or facetime. Thank you.
Tuesday at home, Wednesday at the hospital burns clinic and Thursday at home
Tuesday – It has been wonderful not to trek to the hospital every day and it is so good to have our family back together again. Being apart has been so difficult for all of us, the trauma of being separated is horrible. Now that we are back we are enjoying some relaxing times eating together as well as chilling out with some shows on the TV. I had to leave the house to go to the optometrist and have a cry on the phone with a friend which helped me when I came back home – I am so thankful for these phone calls to help me process all the emotions.
Wednesday was clinic day we left home at 10 am and we waited an hour to find a room so we could meet the burns team for the dressing change. Then we were entertained by the clown doctors who had a repertoire of poo and fart jokes. It was the first time in 6 weeks I have seen my daughter’s body without any of her dressings and the burns and grafts are pretty full-on to see, she also has donor areas on both of her thighs that were bleeding and raw. The pain from taking down the dressings on raw skin hurt her so much she was crying and it is so hard to stay strong as a parent when your own child is in pain. The team had the social worker help H with coping with the pain as this was the first dressing change without general anaesthetic. I can see the skin healing and there are grafts around her cheeks and on her forehead which will slowly get there. The skin graft on her arm from the full surface burn is huge and she will have to wear a pressure garment once it has healed and that will take a lot of time as it is a massive graft. It has only been 2 weeks since the graft so she has quite a way to go. She has no hair and I could see the donor areas on her whole head that was used for her face plus she has alopecia where she has laid flat on the bed as well. It is insane at the amount of pain my daughter has had to endure to get this far. As parents, we are both helpless at what to do except be present for her when she needs us. By the time we left the clinic, it was close to 2pm and I was hungry, upset and needed the bathroom. It was so hard to hold yourself together for that amount of time but H comes first and I got her lunch before dealing with any of my discomforts. We got down to the car and ate lunch in silence and all I wanted to do was to cry at the harm inflicted on our darling girl.
Thursday – acupuncture day for me to realign my spirit and gain some strength to get through this insane mess we are in. Then for the rest of the day, I worked in the garden and listened to audiobooks. In between I was preparing food, ordering groceries and preparing dinner, checking on H and her meds and her exercises because now she has to stretch her face vertically 6 times a day to keep the elasticity with the grafts on her face. This is our life now, we need to eat well to keep strong and keep H on track with what she needs to achieve in this next phase of healing. With burns, it is never-ending because there are many things to watch out for such as skin healing in on itself (called contractures) and that will cause a lack of movement. It is difficult to focus on the positives but I have seen how the grafts have healed on her upper arm and they will all eventually get there and be flattened out.
Friday, Saturday and Sunday at home
Now that H is home it all came as a bit of a surprise as I had a couple of projects planned for the weekend. All was good though as H enjoyed time chatting with her friends online and enjoying time with us watching family movies. All were busy with my son and me as we had a project of converting the veggie bed into a wicking bed which took many steps. On top of that, I had a delivery of mulch, soil and gravel – way too much of all three! So I am pretty exhausted from all the yard work, digging and potting and mulching but the good thing is that as a work in progress it was finished Sunday evening. The extra soil, mulch and gravel I donated to the kindergarten I work at to make their beds veggie ready with good soil to go! H came out and saved us with a snack of some chips as we were in the back alley filling up buckets of soil and gravel to be allocated to different areas of the yard. Lesson learned – 1 cubic metre is a lot of mulch!!
Today was my day at the hospital so I went in at my usual time around lunchtime and H was enjoying a bit of drawing with her teacher Becky. I took off to have lunch and H was still working away using her left hand to do her drawing which was so lovely to see. I waited till her lesson was over and then we chatted over lunch and she told me the dietician has come by and prescribed zinc for her skin this morning. The good thing is that she is 41 kg and has put on some weight with all the overnight feeds. The results of the rest of her bloodwork to check her nutritional status will come back next week. Soon it was time for the physio to come by with her two physio students from the University of Melbourne sharing the knowledge of the rehabilitation of burns patients. Today H had to stretch the skin on her face vertically as well as do her neck exercises to make sure she has the movement of her neck in all directions. She finished her exercises did a bit of a wordle and then off we went for a little walk down the lifts and around the ward and we had to stop because her thigh was so sore. Slowly we are getting there.
Tuesday – Day 39 of Platypus ward
Wow, it is March already and H has been in hospital for 42 days the longest time we have ever spent apart. This is our calendar and what was happening this time last year and I do hope H gets out of the hospital before her birthday at the end of March. It was my hubby’s morning at the hospital today and he said she was in good spirits and did a longer walk than usual around the place. She also had her teacher come by and they set up a jigsaw on the couch to do to break up the day. H is practising some tunes on my ukelele in hospital which is another outlet to pass the time as it is all just a waiting game now for her healing.
The domino effect of H’s accident is that I have now deferred University for the teaching period (which is the next 3 months) and I cannot work due to the high-risk environment of the kindergarten and covid (this means if I was to go back it would me end of April). So that reduces my idea for some sort of normalcy in life, it is important to H’s immunity safe from germs. It looks like I just need to ride it out as the H’s mum to love and care for her when she is allowed to come home again. Until then I am building up my own shield around me (just like those pathogens) with lots of self-care – starting with acupuncture tomorrow, float tank hypnotherapy, myotherapy, kinesiology and massage as well. Yep, this is far away from the medical model but it works for me. Alcohol does nothing except make it worse so it is best to stay healthy and strong and be prepared for whatever the universe has in store for the next phase.
Wednesday – Day 40 of Platypus ward
It was an early start today as we had someone come to our house early morning to put up a fence, some incomplete work from our house build back in 2020. So it was all systems go with getting my exercises done so I could be out for an acupuncture appointment at 10am. I was really thankful that I went for acupuncture today as I feel so much better in my body and mind now – way more relaxed. It was my turn also to go in and visit H at the hospital and as I checked in I was greeted with a familiar face from the gym. It was great as I had not seen her since the gym closed during the lockdown and back then she was studying physiotherapy and was so close to graduating which took ages. So we had a quick chat and now she wants to be an OT – it’s so funny when your worlds cross in unfamiliar places, hopefully, I see her again. When I went up to see H, she was just finishing her lunch of a felafel and cucumber sandwich, yummo! So we had a bit of a chat before the nurse coordinator came in to let us know that H will be off for her dressing change tomorrow around 12pm. It was great as I had not seen the nurse coordinator for weeks and had some questions on what the plan is from here. The response was we will see tomorrow to see how the graft has taken and the surgeon will let us know. Still hoping and wishing with double fingers crossed that the face and arm graft have taken.
While I was at the hospital a friend texted me and told me she was in the Emergency Department with her daughter, so when I left H as she had a school lesson and wandered down to Boost juice to say a quick hello!
Thursday – Day 41 of Platypus ward
Today was a day when I stayed home all day by myself without anyone else in the house – now that was luxury! Usually, with people working from home and a student with a varied school timetable, there is always someone here. Today my hubby was waiting and waiting for H to go into the theatre so he stayed all day – as she did not go in until 4:20pm this afternoon. Yesterday the theatre list said she was scheduled for 12pm, either there are a lot of sick children around or there is a lack of anesthetic doctors as it took an extra 4 hours for her to go to her dressing change today. She gets bumped down the list whenever an emergency case comes along so the day drags on and on as she has to fast from 7am.
The doctor called at 5:20pm to share the news that everything was done and it went really well, with the info of:
no vacuum dressing on the right arm as the skin graft took well with the sign that the skin is pink and all is well with the arm bandaged up
for her face H still has the head wrap and the skin grafts are taking really well with healing skin underneath with dry looking grafted areas where the skin is pink and stuck down
skin healing in the T zone of H’s face is looking really good
dressing change of face and the forearm maybe earlier in the week at the ward and they will give her a sedative for the first dressing change for her face like they did with the acetic acid face cleans
the doctor took photos and we are welcome to see them
H may be getting home at the end of next week but they will see how the dressing changes go
I will be going in tomorrow to see how she is feeling as tonight she will be resting after the anaesthetic, so it is best to leave her to sleep. Today it felt like the weight and worry of the last 6 weeks seemed to leave my body. Finally, to have some good news was something to celebrate so we are off to ramen tomorrow night. Thankful for all the wonderful healing energy sent to H to get her through this challenging time in her life, there is so much more ahead of us but this last skin graft was a big one that needed to take.
Friday – Day 42 of Platypus ward
Today I went into the ward to find an empty bed! H was out getting herself a new splint with her OT for the newly grafted skin on her right arm for the daytime. Plus, she has a nighttime splint she has to wear as well. I then met up with the nurse coordinator and she had lots of news from the surgeon where:
There will be a full body bath under sedation mid morning Monday with endone, nitrous and another drug and they will see how H goes as she has not had a top to toe bath for the last 6 weeks.
The doctors will just assess how she’s going pain wise with the healing of her burns Monday to see if they can let her go home soon.
The burns coordinator will be back next week to help organise a dressing change on Wednesday at clinic.
We left a thank you gift for the team today and they were all absolutely thrilled with their Smalty goodness! Everyone at the RCH is amazing and we are so grateful for everything they have done for us. It is so good to see some light at the end of the hospital stay, maybe it will be over? I chatted to H and for her to come home she needs to eat more, as her metabolism will be working overtime healing her body. I asked her what she would like and she wanted a selection of nuts. So I went to Terra Madre in Brunswick to get her snacks – now I know where to go to get the good food for when she comes home, whenever that will be next week? Fingers crossed again!
Saturday and Sunday – Day 43 and 44 of Platypus ward
My hubby went to visit Saturday with a meat pie for H as we have to fill her up with lots of food to heal her body. I stayed at home for a bit of a break from the hospital to catch up on some reading and yoga in the morning. Later in the arvo, I went to visit my friend and we went for a walk with her dog – just the 3 of us which was lovely. It was so relaxing just to drive somewhere else that is not the hospital route. So many beautiful trees are in her suburb and this beautiful silver princess had so many gum nuts hanging down, it would have been so beautiful in bloom. H was doing well and went for a long walk around the hospital and found the meerkats.
On Sunday I had a zoom call with my neighbour from CA and it was so good to catch up and talk about everything that has happened. We used to spend hours together having picnics down at the park with the children when they were little, I miss her so much! Afterwards, my son and I went to the hospital to say hi to H to break up her day. The best time to visit the hospital is on the weekends as it is so quiet! It was a little exercise for H as she has to move out and about and she also told me her donor spot on her leg is feeling so much better. It will be back to the burns bath for her tomorrow morning and then we will see what the next steps are from there. This week is looking to be a big one with my appointments at the optometrist, the float tank and acupuncture plus with some luck having our family back together again!
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.