Monday – Day 19 of Platypus ward
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 ✌️