Winter 2018

Winter 2018 was not the best for our princess.

Two weeks after coming home from hospital and still recovering from pneumonia, we were back in the ED. This time she had caught a nasty viral infection which is as bad as influenza. The fact that she hadn’t fully recovered from round one meant that her immune system was weak and the infection was able to spread faster.

Because her breathing was erratic and oxygen saturation was on the low 90s the doctors decided that she would be on the high pressure breathing machine to help ease the work load on her lungs.

Unlike our last visit to the ED we were able to go up to the ward with in a few hours. Diyanna was on the machine for just over 24 hours and showed signs of improvement. Gradually she was taken of the machine and was able to breathe normally with out its help. Over night she was able to maintain an oxygen saturation of 96%.

The following day after breakfast it was noticed that her oxygen saturation was dropping but she was not under respiratory distress. Oxygen was given to her for 5 minutes and he saturation was back to normal. But after 1.5 hours he saturation started dropping again. The nurses and the on call doctor were not sure what was going on.

After a while waiting for the doctors to figure it out I noticed that her skin had become very dry. On a hunch I gave her some nasal spray immediately her oxygen levels went up to 98% and again after an hour her oxygen stats started to drop. Then up again when she was given the nasal spray. When the doctor came back I told her what I observed and she said that the rooms were very dry and that it might be why its hard for her to breath as her nose keeps getting blocked.

As they couldn’t provided us with a humidifier to Diyanna’s room and that there was nothing left for the doctors to do we decided to take her home. Her room was kept at a constant temperature of 24°C with the humidifier running on full at all hours of the day.  With in a few days she was on her way to recovery but being on antibiotics for almost 2 months was starting to take its toll on her gut health.

At the start of August her re-flux was back with a persistent cough. Her bowel movements too became irregular. Painful seizure episodes which had not been happening for 2.5 months were back. Every morning between 3.00 am and 6.00 am I would here to her painful screams. During these seizures she would struggle to breath and would shake as if she was a rag doll. Some days her lips would turn blue and her skin would go pale. There was nothing we could do to help, we just had to get her through. Emergency oxygen was on stand by and throughout her seizure we would be suctioning her secretion so that she wont choke and aspirate. These painful seizures would only last for a few minuets but calming her down after these episodes would be more than an hour. By the end of it she would be so exhausted that she would be knocked out.

This was a huge blow to us. We were back to where we were at the start of the year. One step forward two steps back.

By the end of August she was back on antibiotics to make sure that she will not get aspiration pneumonia. During her respiratory specialist appointment in September it was recommended that Diyanna’s antibiotic be changed and that she should be on it for 6 weeks. Unfortunately this only made her re-flux and irregular bowel movements worse. Her seizure activity was higher than it had been the past few months. And every time I would here her blood curling screams my heart would sink.

But none of this addressed the main problem which controlling her early morning seizures. We increased her AED dosage, we made sure that she was not on an empty stomach, we tried to make sure that she had passed her bowels before 2.00 am, but none that did not make any difference. To observe these activities closer I swapped the 1.00 am shift with my dad. During this time I would notice that on a few occasions she was struggling to swallow. When I used the suction machine a small amount of think white liquid was captured. I continued to do this through out the night and asked Dinesh too to continue it when came in to take over at 4.00 am. That day we managed to avoid the seizures that causes extreme distress.

Speaking with our GP she about what happened she said that the liquid is probably post nasal drip. Due to Diyanna’s condition it is harder for her to swallow this when she is a sleep hence it pooling over night at the base of her throat which causes her to choke/ aspirate triggering the seizures. This reasoning seems to make sense as we were able to get her though 4 days with out incident.

For us this has been a very difficult time. None of us have had enough sleep and our stress and concern over Diyanna’s health is extremely high. On a positive note it has been 12 days since we finished her antibiotics and her re-flux has improved along with her cough. Through out all this she has managed to maintain her oxygen levels above 95%. Her appetite has not changed and she has not had any fevers. Hopefully we will keep tracking this way and she will eventually over come this just like she did before.