Monday and Tuesday @ home
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.
Sunday – birthday celebration with friends