Monday – Day 12 of Platypus ward
As the days go by the last two weeks has felt like a month has gone with so much to take in and feeling very discombobulated and out of routine. Hah, I feel just like that octopus up there! Anyway, Monday morning was a very busy time, then I was relieved of my shift I went to my myotherapist appointment for a chill-out massage and escape from reality. Here are today’s highlights:
- got her teeth brushed
- ate yoghurt for breakfast and started trying the hospital food of soup and pureed foods
- ketamine line taken away and catheter out
- has only one nasal gastric tube for a feed – which is amazing! This will slowly be dropped back to carry over at night so H can work up an appetite during the day
- did face exercises and leg exercises and was planning to stand up this arvo with the physio
- the good thing is that the pain meds are being reduced and she is being relinquished of all the tubes that were connected to her body so she can be free to wander around – which might mean a visit with friends downstairs!
The healing is going well each day and beneath the redness and blisters that disappear, I can see H’s face clearer each day. She is starting to get bored and clean out her email and then she will text friends, she might even be watching YouTube soon – which means she is really on the mend!!
Tuesday – Day 13 of Platypus ward
I need to work on the affirmations above but today started off a bit flat, angry and frustrated. After a Body Combat session, I released all frustration, watched a bit of YouTube, had a chat with my friend on the phone and enjoyed a lovely lunch and cuppa at home it was time to head on out to the hospital. One thing my friend said to me was to reframe the trips to the hospital towards a retreat with Holly. I need to enjoy the time I have with her there. It is funny, even though she is there resting, there is medical staff with her doing all sorts of things from physio to meds. Also because of COVID we hang out 1.5 metres away when anyone else is in the room. This means we retreat to the corner away from H, so no holding her free hand, so we have to grab the opportunity to chat with her when we can!
Damn COVID and masks all day, not a fun venture but today I took some sewing with me so I could pass the time crafting in the afternoon sun. Yes, the reframing does work and H was super tired today so she rested, texted friends and listened to her audiobook. The good stuff that happened today was:
- she sat up on the edge of the bed, stood up and sat on a chair for 30 minutes – she said it was nice to see outside the window
- can sit up for 15-20 mins
- increasing the time between taking endone (her opiod pain med)
- played the Lingo game on the hospital TV and won a jigsaw (unfortunately she cannot use it due to her hands in bandages)
- watched SBS food and learned how to make dumplings
- fed herself with her left hand and ate the hospital food of spaghetti sauce, potato, beans and ice cream (still only mushy food)
- yelled at me and said I couldn’t bring dumplings for her at the hospital because she cannot eat them! (I told her I will save some for her for when she comes home)
- Had a lovely jam session with her music therapist and played the ThumbJam app on the iPad – heres a recording of the track
- Her face is healing really well and we can start seeing H through all the bandages
Wednesday – Day 14 of Platypus ward
Today was quite exciting as H got us and walked around the bed and got to see out the window at all the beautiful trees surrounding the hospital at Royal Park. My hubby and I had our weekly team meeting with the physio, OT, child life specialist, social worker, burns surgeon, plastic surgeon, nurse coordinator and the dietitian. The surgeon, physio and OT are so happy with H’s attitude and how motivated she is with her exercises and movement. Hopefully, with getting up and being able to sit up H will be able to meet her brother at the playground in the shade in a couple of weeks. She will have to be in the shade and away from the sun to keep her skin safe, according to her PT. Her brother will have to have a RAT and then he can spend time and see her in person, it has been nearly 3 weeks since they have seen each other. Then hopefully after she has had one visitor, she can have some more and see her friends.
H is now off ketamine, the drug that really helps with the body pain after burns and tonight she called us from the hospital to say she was in pain all over her body. I had been with her all afternoon and she was asking me to pat her (like a cat!) to help with the itchiness on her head and face where some of the burns are located. When I left she was getting some antihistamine medicine to help with the itchiness. I had come home and we had just had dinner and I was about to have a cuppa when we got a FaceTime call from H and she was really upset. My hubby has gone to spend the night with her at the hospital tonight as she is feeling really overwhelmed about what is happening to her.
H is coming to terms with the reality of what has happened at last and I told her to have a chat to her social worker as well to help with the trauma. For the last couple of weeks, she has been oblivious to what has been happening (I presume the drugs keeping her comfortable have a lot to do with this). Also, her medical staff keep her pretty busy during the day so she has a good sleep at night. Tonight was the night that she really needed us to be with her to help her get through the pain and the reality of what has happened and I am thankful that we live so close to the hospital that we could be with her to get her through. I just got a text from J that she is resting peacefully – thank goodness! Tomorrow it is back to theatre for a dressing change and another big afternoon when the next baby step will be revealed. I told her that there are so many people who love her and sending her healing messages, the best thing we can do is hold those positive thoughts to get through together.
Thursday – Day 15 of Platypus ward
Today was a dressing change day and I got into the hospital in time as a friend dropped me off to hang with H before she was wheeled off to theatre. I stayed with her while in the holding bay and then went all the way into the room where they put the needle in her arm and gave her a general anaesthetic to take off all the dressings and see what was healing. It was good to be able to be with her until she was sent off to sleep, she also had laughing gas to numb the pain as the doctors were finding veins on her arm and foot for the needles. Her time in theatre today was about 3.5 hours and then she went to recovery, where someone messed up the call to the parents and we were left hanging for another 3 hours?!? It was a busy day in hospital as always…
Well, there was good and bad news for the dressing change today and the good news is that the BTM on her arm is looking great and the legs and arms are healing well. H will have functioning fingers on both hands to text and email her mates and her right arm is on the mend. The hands will be in action and she can eat, drink and walk around. The bad news is that there was an infection in her ear and the face so the neck graft did not take. So due to the infection, she has to take a broad-spectrum antibiotic to get rid of the infection before they can graft the skin. With this hurdle H will have to go into theatre again on Monday for a head, face and neck redressing. Her ear will be dressed twice a day and ointment will be painted on her ears to clean up the infection. Funny thing, I did tell the nurses and the surgeon she had been complaining of ear pain since Friday, but then she just got more drugs for the pain and her bandages were cut a bit looser on Monday and that was it.
So the next baby step is to knock the infection away so the surgeon can regraft the neck where the skin can be taken from her leg or somewhere else on the body. That is really an important step before regrafting otherwise it will fail. In the meantime, H has asked for some of her faves from our dinner recipes, which is my vegan ramen. She cannot have the noodles yet, so I made her a miso broth which I will take to the hospital tomorrow to provide some well-needed home-cooked love and goodness in her body. It is so hard for me to see the hospital food and how unappealing it is for her. Now that I know I can take soup to her bedside, love from our kitchen will travel to her 🍜
Friday – Day 16 of Platypus ward
I got to the hospital today and it was only when I signed myself in I realised it was Friday! Every day is starting to look the same with going into the hospital and hanging out seeing who is with H. Today I got there and it was PT time, then we left the room for H to have some time with her social worker and then it was time for her teacher to visit her to do some school work for an hour. Finally, around 4pm we got to spend some time with each other and organise what she is ordering from the hospital menu. It is so much better now that she is on a high energy diet and can eat as many hot chips as she wants. We missed ordering dinner tonight but she was pleasantly surprised and she enjoyed roast chicken, veggies, a bread roll and butter and chocolate mousse for dessert. Looking at tonight’s offerings I have to say she has taken quite the step up from her bland pureed meals. Also, she enjoyed the miso I bought for her as well as the two dumplings she scoffed down with some soy sauce. It was the most amount of food she has eaten in 3 weeks, so hopefully, she feels ok in her tummy this evening!
I went to the health shop today and got a lovely bone broth which I added to the miso and it gave it a lovely depth of flavour. While I was there I found some carers bush flower essences for me to get through the rest of this time and the lovely lady at the stop gave me some tranquillity cream for bedtime for a good nights rest. Oh, the universe you are truly amazing 🙏
After all the dramas of the dressing change yesterday we are just taking it easy and enjoying hospital life until the Monday head and neck dressing change. Today’s highlights were non-stop:
- H sat up in a wheelchair which she can use to get around and have visitors (she calls it the space ship)
- She can eat anything she likes
- We help with her care by massaging sorbolene cream on her hands 4 x a day
- To have visitors she detaches from the IV and can stay in the wheelchair for about an hour and apparetnly there is a meerkat enclosure on the ground floor as well!
- Only wears splints on her hands at night
- The pain is in her right hand where the BTM is and where the most arm and hand damage is
- H got up and walked around and sat down
- All her fingers are free and she does finger exercises while watching SBS Food
- The goal is for the nose tube to be out and to be eating everything
- The infection is not in the cartliage, it is just a surface level infection – thank goodness!
When I got home and checked the mail today we got a bill from Ambulance Victoria for the airlift for over $11,000 – now there you go, that is what it costs for an emergency helicopter ride to the helipad on top of the hospital! Hopefully, we can claim some of it on our private health cover. So whenever you are thinking of an Ambulance subscription at $100 a year for a family, it seems to be worth the money!
It is nearly time for the weekend where it is very quiet at the hospital and is a good time to chill for H and to finally catch up with her brother after 3 weeks of not seeing him, that is something to look forward to!
Saturday – Day 17 of Platypus ward
Three weeks in the hospital today!!
Today was a big day with H’s first visit with her brother at the little area of the hospital where all the fast-food joints are. It was lovely to be out of the ward and be just out and about with the whole family together after 3 weeks!! I would have to say that is the hardest to have our H in hospital with the rest of us at home – we are all missing her here. Today’s visit went well but she was quite tired after it all and rested in the afternoon. The plan would be one visitor at the most each day as it is quite a bit to organise to get her on the wheelchair downstairs as she has a little vacuum sealing the bandage in her right arm. She managed a little bit of a walk to the aquarium to see the fishes with us but we had to stop at security as her brother was not allowed in (due to covid rules we have to get a special exemption?!?). We just gotta work with what we can do and that is meet in the public zones. Today the good things are:
- her face is healing well and is doing mouth stretches to stretch out the skin from her eyes to her mouth up and down and sideways around the face – this is important for wide facial expressions
- had a bit of a wash and had a change of clothes in the the shower and is wearing lovely new PJs instead of the hospital gown
- enjoyed meat pies for dinner and pasta bolognaise for lunch – the hot chips were very disappointing, so they were cancelled from future meals!
- the physio came and had a great chat about compression garments for the future to help with scar management, she may have to wear them for up to two years
Overall, we have to stay with that one day at a time mindset when we are losing track of what day it is. It will be fine for my hubby back at work next week to have some work routine. Then I will be on Uni holidays for 4 weeks and another 3 weeks off work at the kindergarten – so it is into the twilight zone for me for the upcoming weeks.
Sunday – Day 18 of Platypus ward
Today’s trip to the hospital was a planned rendezvous in the afternoon and an escape from the ward to the public area downstairs for H to meet up with her friend. It was a great afternoon to be away from the space where H chatted to her friend about what has been happening with the hospital stay and how they both miss each other. In the morning she also chatted to friends in California on a zoom call.
Being able to get around is such a great thing and H loves her spaceship (wheelchair as she calls it) as she has a helmet of bandages ready for her trips around the hospital. We went outside for the first time in 3 weeks but it was so windy everything was being blown around, she was afraid of being blown away. Plus the Ravens were having a grand old time of pulling the Maccas rubbish out of the bin looking for a stray chip. The other bonus is that H is so alert she can navigate around the iPad herself and we are getting her to do her own face exercises three times a day as well.
Listening to podcasts is a great way to pass the drive time to the hospital and this is the one that a friend recommended that I have been listening to this weekend it has helped with a shift in my mindset, it is so important for me at the moment. Thanks so much for the recommendation! Tomorrow is a dressing change for the head and neck and hopefully, the infection has been zapped away by the antibiotics!