Monday – Day 24 of Platypus ward
Today sucked so hard!!
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!!