Monday – Day 45 of Platypus ward
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!!