Easter Sunday 2018 It was around 9.30pm Easter Sunday when Phill got Oscar out of his cot for a dream feed when he brought him out into the loungeroom Oscar vomited. Phill then noticed Oscar was extremely hot so he stripped him down to just a very light cotton sleep suit.
After Oscar took his bottle & Panadol, I took him into bed with me where I nursed him to sleep in my arms. He jolted himself awake almost every hour and I nursed him back to sleep each time.
I think it was maybe 2am when I placed Oscar in a cold sink to try to cool him down. His little hands were cold however his body was very hot. He had more Panadol and Nurofen.
4.30am Easter Monday I told my husband that something wasn’t right and said I was going to take him to Campbelltown hospital. Before we left, I changed his nappy and realised his little body was covered in a pink rash. Thankfully my parents were staying over that night so Phill stayed home with Violet and my Stepdad while Mum came to the hospital with Oscar & I.
After arriving at the hospital, the nurses checked over Oscar and after much effort, finally placed a drip in his arm. At this stage I was none the wiser as to how our world was about to be turned upside down.
I asked Mum to go home and send Phill in to relieve her. Whilst waiting for Phill a nurse or doctor informed me that they were testing for meningococcal, to which I still hadn’t realised the severity.
Once Phill arrived we waited while nursing Oscar on our chests. At this stage Oscar was very sleepy and slightly grey in colour.
A female doctor walked up to us and said that we need to Expect the worst and hope for the best. It was at that moment we realised just how bad this was potentially going to be.
Oscar was rushed into a solitary room with many cords and machines surrounding us and a camera set up watching our every move. I laid on the bed nursing Oscar trying to hold back tears while an oxygen mask was placed on his face and the doctors and nurses started treating him for meningococcal.
I left the room to have a small breakdown in the hospital hallway. Phill stayed with Oscar while they had to insert a catheter. Paramedics had arrived and we waited with Oscar until they gave us the green light to be transferred to Westmead Children’s hospital.
We arrived at Westmead Children’s Hospital, feeling uncomfortable being in an unfamiliar environment. I’m not sure what time as the day was a blur. We were placed into a ward away from everyone where people came and saw “the baby with meningococcal” and soon left.. it was like we were in a freak show. We waited a while for a bed to become free.
Before we knew it, Oscar was in ICU with cords all over him. We waited while doctors came in covered head to toe in yellow disposable gowns (this was prior to covid and was very confronting) they advised us that they may need to conduct a lumber puncture and were curious if the disease had gone to his brain. Once the room was full of people there saving little Oscar we were advised to go and try to get some sleep. I asked if they could just please do one thing, give Oscar cuddles, because he loves cuddles. I later went back to his room and saw a very tall doctor or nurse holding him in his arms. This gave me some comfort having to walk away from my baby.
We were given basic necessities, to get by. Toothbrushes toothpaste etc and taken to our room which consisted of two single beds a bench and a telephone in case we needed to receive news on Oscar. Which we dreaded ringing. There were also shared showers which I think I used twice.
Phill and I cuddled in one bed, crying and hoping that things would get better. I remember telling him that this must be hell. We must be in hell.
Whatever random times we would wake up, we would go to the room and be with Oscar.
We had the Health Department calling to ask us for everybody we had been in touch with and all of their contact details. We were advised we all needed to take tablets to clear us of any meningococcal that we could be carrying.
We were told the infectious disease specialist would come to talk to us about what is happening.
We were told we had to wait 48 hours to see the extent of how bad this was going to be.
We were told that they didn’t know how long we were all going to be in hospital.
I wondered if I had still been breastfeeding him if he would recover quicker.
Sonja my sister was asking for photos of Oscar. I couldn’t send them, nor take them as I didn’t want them to be the last photos of him in my phone.
I wondered if I’d be planning a funeral the following week. I had many irrational thoughts and wondered why me? While Oscar was in hospital, I turned into a clean freak and was super paranoid about germs. My hands dried out and my back was so sore due to holding him all the time.
I received a message from Phill’s Mum saying that I better not be crying and falling apart. I better be keeping it all together.
When changing Oscar one time in ICU he poo’d and it went all over me and my feet, I was wearing thongs at the time as they were all I had, I then started becoming worried about germs and infections.
Oscar was moved from ICU into another ward after 2 days which was some progress. By this stage they had confirmed he had a bad gastro called Nora virus. We were asked to have minimal movement around the hospital to stop the chance of it spreading. In the new ward Oscar was on a lot of fluids. To the point where he was unrecognisable. His face super bloated and his eyes. He also had blood in his urine bag. The nurse suspected his kidneys may be affected. Thankfully someone realised that he still had the catheter in, an adult one at that. Once removed everything cleared up.
It was around this time his limb tissue started rejecting the cannula. He had the location of the cannula changed multiple times.
When the doctors or nurses came to check Oscar, we would leave and walk down to the coffee shop. We would buy coffee and sit and not really say much, nor did we drink our coffees. I’d stare at the toy shop and always wanted to buy all the toys to give to Oscar to make him happy. I don’t think I ate much at all in 8 days.
I started receiving calls from the Real Estate Agent and solicitors as we were moving to a new house on Friday, and they all needed information from me. At this stage I didn’t care about this at all and often had thoughts that I’d give my house in an instant to be able to walk out of this hospital with my baby Oscar.
Aunty Sarah popped into the hospital to get her kids immunised against this horrible disease and dropped us in a bag of food and supplies.
Holly my bestie came to visit as she wouldn’t take no for an answer and being a nurse, I felt comfortable with her visiting. She brought us a bag of clean clothes and everything she thought we might need, including cold sore cream 😊
Holly told Phill and I to go for a break while she held Oscar for us.
We went to the restaurant but didn’t really eat much. I think it was because of Holly that we were moved to an isolated room, where we felt much more comfortable. It had its own bathroom with bath and shower, however I had such a germ phobia by this stage I stopped showering.
The room also had a pull-down single bed where we would occasionally try to nap, I’d sleep with a mask as I was paranoid.
I remember trying to sleep one night and I was convincing myself that I was getting meningococcal. I was sure my neck felt funny.
Oscar started to drink a little bit of milk again and eat soft foods and things were starting to look up.
Nurses were constantly asking us about the last time Oscar had a wet nappy, the last time he had fluids, antibiotics, milk etc – we started writing everything up on the whiteboard ourselves, so we had some kind of control over the situation as no one else seemed to know.
Once in the new room nurses came to give Oscar a new cannula under an ultrasound. We had to pin him down to the bed while he cried and the nurses tried over and over to find a vein that would accept the cannula. Unfortunately, Oscar’s body wouldn’t accept these cannulas anymore. The antibiotics had stopped and we were advised that Oscar would need to go under general anaesthetic so that they can run the cannula closer to his heart.
Oscar had a gap of maybe 8 hours with no antibiotics. I was getting worried, I was angry and didn’t know why things had stopped. I asked the nurses what was happening and basically we had to wait for an availability. I paced the hallways and cleaned the room with antibacterial wipes.
Finally, after what felt like a really long time, there was a spot for Oscar to go under.
Phill took Oscar down to the anaesthetist and came back into Oscar’s room crying. He said he basically had to sign Oscar’s life away. He was informed of the risks that go with anaesthesia including death. I said we don’t have an option at this stage. We had to do it and wait for a phone call to say he is awake.
After what felt like a lifetime, Phill received a call to say Oscar was waking up out of his anaesthetic. We rushed to his side and stayed with him until he was released back to his room.
Friday – we had to move house. Phill had to leave the hospital to go home to move our home from Appin to Wilton. I didn’t want him to leave. My sister Sonja came in for the day to be with Oscar and I. She brought me in shoes to wear and she brought me a nice Acai bowl. She nursed Oscar to give me a break and we sat in the room all day. Phill went home to a small crew of people who had turned up to help him move our house.
I think it was Saturday or Sunday when I got to leave the hospital to visit little Violet who was being looked after by Granma. I remember driving home and I felt happy. I felt that things were starting to look up. Oscar was finally improving, and I was confident enough to leave Oscar at the hospital with Phill.
On my drive home I called Mum/Granma, to let her know I was on my way. Mum was quiet upset and flustered. She said she didn’t know where anything was as we had just moved. She said there was a constant beeping coming from the new alarm system & to top it off Violet was vomiting at home and wasn’t well at all.
After getting off the phone, now getting myself into a state, I called my bestie Jade and asked for help. Her & Sara came over and got straight into organising our home.
I was looking after Violet and making sure she was ok, then I’d go and try to get some unpacking done. One thing I did was have a nice long shower and got changed into some clean clothes.
Mum, going a little crazy from this beeping from the alarm asked me to look at it. I pressed buttons to try to make it stop. Violet was vomiting and I just wanted this beeping to stop. I think at this stage I was still receiving calls from the real estate regarding our house we had just sold. I was pressing buttons, and set off the alarm. This broke me.
Broken, I walked out to the front yard and fell to the ground crying and said I can’t take anymore. Neighbours came out to see why the alarm was going off. Manual & Steve walked over, I asked them to please make this stop. I explained my son was in hospital, we have just moved in and my daughter is sick inside vomiting and the beeping alarm had my Mum going crazy. They called security to ask them to help. They all went into the garage to the alarm unit, and I said they had my permission to rip it off the wall. Thankfully that wasn’t necessary. They disarmed the alarm.
After hours of looking after Violet and trying to organise the house, I had to go back to the Children’s hospital. Jade & Sara stayed with Mum & Violet and set up our entire house.
It was around this stage I asked the lady who provided us accommodation how long we had the room. She advised we were running out of time but could stay at the Ronald McDonald house. Which I remember thinking that was a place for really sick kids. Thankfully we didn’t end up there.
By now Oscar was improving significantly which meant we were able to move into another ward. A clean ward with a clean room. Just us and a tv a toilet, basin and a small pull-out lounge where I partially slept.
Oscar started showing interest in the touch screen that he was allowed to play with. He was taking in much more milk and was really showing improvement. He was happy to sit in his cot and play with toys that we had bought him from the hospital toy shop.
Poppy came in for a visit. Oscar was happy to see his face and loved his cuddles.
We were now finally on the home stretch and were waiting to be released from hospital. This was the best feeling in the world.
Oscar was finally released, and we got to take him home to his new house, to see his sister and his family who were looking so forward to seeing him, especially our puppies. The happiness on his face when he saw his sister and Granma was priceless. He loved his new room, his new house and he loved being home.
Oscar since has suffered a lot of leg pain. It was quite frequent after the meningococcal. He would wake screaming and wanting his legs rubbed. Or would be sitting in the car and randomly start screaming from leg pain. He never took Panadol as he was mentally scarred from the hospital trip. He always refused medicine and would literally poo his nappy when taken to the doctors.
Oscar still has leg pains, less frequent, but will now take Panadol and after a rub for 10-15 minutes, he is ok.