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.
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!!
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 ✌️
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!
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🌟 ❤️🩹