Hopeful 8/52

Monday – Day 31 of Platypus ward

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

Tuesday – Day 32 of Platypus ward

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

Wednesday – Day 33 of Platypus ward

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

Thursday – Day 34 of Platypus ward

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

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

Friday – Day 35 of Platypus ward

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

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

Saturday and Sunday – Day 36 & 37 of Platypus ward

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

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

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