The last few weeks of June 2018 have not been the best for our little princess as she was in hospital for viral pneumonia.

From the start of our journey with Diyanna’s condition the doctors have been clear that we could loose her in two ways. The obvious one is that she will have a horrific seizure that will stop her breathing and her heart. The second being severe, irreversible pneumonia. Given Diyanna’s fragility, she is at high risk of a respiratory infection becoming deadly.

The week following her birthday, Diyanna’s health was the best in a along time. Her paediatrician was surprised by how well she was. But as always this didn’t last long. It started with a small cough on Sunday evening. Monday morning began with her vomiting her milk followed by a series of spasms and clonic seizures. At that time, I wasn’t overly concerned as it was a very small cough and thought it was due to the, on again off again, reflux issues.

The cough persisted through out Monday, making it hard for us to feed her. By Tuesday she had settled a bit more and her eating was back to normal. Wednesday was the same but by 6.00 pm she had a slight temperature.  Her cough was back on Thursday but was worse than before. Her nappies too were dry and just like the night before she had a slight temperature.

At at 1.00 am Diyanna was up having a coughing fit and a temperature. She coughed for 10 minutes with each cough it became harder for her to breath as she was tired. We gave her emergency Oxygen that helped ease her cough and eventually she was able to sleep. It took us almost 2 hours to calm her down.

Because of her rough night, our morning routine went out the window. Dinesh and I left for work Friday morning with out being able to give her her morning milk. When she finally woke up, she did so with a cough and temperature. Although I had made an appointment with our GP, I decided to take her straight to the ED. We got there by 11.30am and were sent to Resus. Her cough and temperature settledduring this time. When they got back to us with a result and a script for a UTI antibiotic it was 3.30 pm. Diyanna hadn’t had breakfast or lunch. She was tired and weak.

At home we gave her an early dinner and tried to put her to sleep but she was restless and kept having coughing fits. With one such cough she vomited out most of her dinner. She wasn’t calming down so while giving her emergency oxygen, we called emergency and took her back into ED.

On our way to the ED the paramedics gave her little bit of ventolin, which helped her to breath. Back in Resus, Diyanna’s observations were stable but she was working harder to breath. They continued to give her ventolin with low flow oxygen which calmed her down almost immediately. A chest x-ray showed a slight infection in her right lung. After speaking with Diyanna’s paediatric team, it was decided to have her admitted for observation for 24 to 48 hours, IV antibiotics was started . As there were no beds available we were moved to the short stay unit.

By morning Diyanna was exhausted but normal and was breathing without oxygen support. But a decision was made to stop the ventolin. As the day progressed we were moved from one area to another in the ED. In the mean time, Diyanna had her a late breakfast and was content, until she started the coughing fit. With a little bit of oxygen support she was able to recover faster from them. By 2.30 pm we were still in ED waiting to be taken upstairs. I felt her temperature rising and advised the nurses and the doctors at short stay that we need to give her panadol soon as possible as or her seizures get worse when she has very high fever.

When the panadol came it was too late. She had a coughing fit that lasted for 40 minuets, a temperature at 39, a series of spasms, dystonic posturing and ended up having a tonic colonic seizure. She went from doing well to being extremely sick in an hour and I was furious with the nurses and doctors for not listening to what I was saying about Diyanna.

She was then put on a high flow oxygen machine. Being extremely tired and exhausted, she was not able to finish her lunch or have dinner. I have never seen her this sick in a long time. The doctors came and apologised for not giving her the panadol on time. Although I accepted it, I felt they had neglected their duty of care of Diyanna.

Because of the seizure episode, the doctors were not sure if she should be sent up to the ward or to the ICU. I spoke with the doctor from the ICU and the head nurse of the ward and explained what triggered the afternoon event and how she was prior to it. Thankfully, they agreed that she was well enough to go to the ward. It was 10.00 pm when we went to 9a. Up in the ward the nurses were kind enough to let me sleep with her.

As she was on the high flow machine, a nasogastric tube was put to suck out excess air that would collect in her tummy. I asked the doctors to give her 2 milk feeds via the NG tube so that she had some form of nutrition. I stayed up all night watching her.Sunday was quiet compared to our drama filled Saturday. Diyanna slept most of the day and had only half of her lunch. She still had the coughing fits and by late afternoon her temperature started to go up again. But I was able to ask the nurses to give her the panadol. They were happy to follow my knowledge and understanding of Diyanna.

Monday morning after 2 hours of sleep I went to work, leaving Diyanna with my mom who came with Dinesh at 6am. I rushed back to hospital at 10 am and was just in time to handle Diyanna through a coughing fit and to speak with the team of doctors who were there. I was thankful that the doctors were there to observe her during the coughing fit and I told them what I felt that it was a viral infection that she had been fighting for almost a month. They agreed with my opinion and also felt that she was wheezing during the cough. All the tests so far had come back negative as well. They immediately started her on the ventolin again and changed her IV antibiotic for the 3rd time.

Over the next few days Diyanna got her appetite back and was having regular wet nappies. Her coughs were not as frequent and only lasted for about 5 minutes. By mid-week she was off the breathing machines and was keeping her oxygen levels above 93% during a coughing fit. The doctors were still unsure as to what was causing the infection as every test was coming back as negative. This made them feel that it was most likely a rear viral infection but to be on the safe side they sent her home with an overall cover of antibiotics and an inhaler with a weezing plan.

Seeing her recover from that horrible day and being able to come home with in a week was truly a blessing. But we still have along road to get rid of that nasty virus!

Finally up in the ward

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