In hospital again, we seem to live here, we know the staff so well and how things work and it is becoming second nature. Whenever we are in hospital Faith is attached to a oxygen saturation monitor and during the night I have always noticed that at times her oxygen saturation drops to around 60% and by the time I get the nurse in to check Faith, it has gone back up to 100%. She seems to do this all through the night but more so early in the night. I kept telling the nurse and she said that she has recorded it but since she didn't see it and whenever the nurse stayed it wouldn't happen. One day the oxygen saturation did drop when she was awake and this hadn't been noticed before as she usually had the monitor on a night. I alerted the nurse to the situation and she noted it again and called the pediatrician. We are getting somewhere. When the consultant called in we explained it to him (as he wasn't told) and he was concerned as breathing difficulties and apnea are a big concern with Arnold Chiari ii malformation. He said that this needed to be investigated but as it was Friday we should just go home and come back next week for a preliminary investigation. If anything significant is found then they will contact the respiratory team for a sleep study. He did say that we should have a apnea monitor as a precaution. We were quite anxious as we could see he was concerned too.
We got home and found it hard to get a monitor, small towns, we should have known and got one in Brisbane. We tried the local hospital and they said you will have to wait until Monday when the pediatrician is in. She needed one straight away not a few days away. In the end we found a really expensive one but at least we could sleep soundly at night. It was something. We were only home a few days and we headed back to Brisbane. We were unexpectedly taken to the bigger kids ward as the babies ward was closed for renovation. This was a bit of shock going from babies ward to big kids ward. We know Faith would go there when she was older and it would be fine but she wasn't ready. Or maybe we were not. Either way first impressions didn't go well. They didn't know us so they appeared distrustful of our care of Faith. This put us on guard which meant no rest because we couldn't trust them. They just wandered in and said, and started hunting around for catheters, if she had asked she would have know we do that and it needs to be done right and not so frequently as they were trying to do. We found straight away they didn't listen to what we would say about Faith's care. It was a constant battle. They would come in and go to start doing something to Faith and I would ask politely what are they doing and when they explained it was either unnecessary as we took care of it or it was totally wrong. It was quite frustrating. The first night there Faith was just to be connected to the oxygen saturation monitor and it would be recorded and the respiratory doctors would review and see what needed to be done.
As suspected she did drop quite low and for extended periods at a time. A nurse looking after another patient wanted to give her oxygen but the nurse that was looking after Faith said no this is a recording we shouldn't touch it. I found that distressing and when I was about to say I didn't agree, her saturation went back up to 100% and she was mostly ok for the rest of the night. The next morning it was decided that Faith needed a detailed sleep study but there was quite a wait to have a sleep study done but luckily at the last moment someone cancelled and Faith got the spot. Little did I know that this was the last day I would walk free with no oxygen tubes and tank on my shoulder. I wish I had cherished the freedom more. Anyway, Faith's head was covered in wires and she had some attached to her chest, tummy and feet. A hat that went over Faith's chin was put on as well so the wires didn't move. She cried all the way through and continued to scream and complain for quite a few hours before she settled. The previous night's monitoring I had little sleep so when Faith was settled and asleep I fell into a deep sleep. The next time I woke Faith was on oxygen and the respiratory nurses left it on and connected until the specialists review the findings. We walked back to the ward attached to the oxygen cylinder and after a stressful entrance we got back to Faith's bed.
It was found that due to neurological reasons (Arnold Chiari ii Malformation) Faith required oxygen 24hours a day. For some reason I saw us coming to hospital to see whether Faith needed oxygen but I didn't think 24hours a day. I thought she would need it at night time. This was a shock. We crossed state borders for Faith's care and the health system in NSW works a lot differently to QLD so we unfortunately found out that we would have to weeks and weeks in hospital before to go home as the health system to obtain oxygen was so slow. This was quite a shock. I was so upset, staying away from home just because our state government couldn't organise a supply of oxygen for our daughter. Surely there had to be some other way. We looked into privately buying oxygen but it was so expensive. We would have to wait and wait.
My first Mother's Day was to be spent in hospital, another special occasion in hospital. I was sad. A wonderful surprise was that Faith said her first word, dada and a few hours later mama, what a considerate little girl saying her first two words being dada and mama on the same day. She started talking so much from this point, it has to be because of the oxygen. How exciting, Faith's first words! What a great blessing! The day before Mother's Day too. On Mother's Day my husband bought me a beautiful bunch of roses and Faith bought me ugg boots, very spoiled. My mum and dad visited and the make it happen pain nurse organised a portable oxygen cylinder so we could go and have lunch together. That was so much fun. We had a family day walking along the river and dining out.
My husband had to go home sadly and with ongoing challenges of the current ward, we were being moved back to babies ward as it had reopened. Yay! That night I got so sick, I had picked up a vomiting bug at the other ward, so we were immediately isolated. I was so sick and my husband had to come back as I could barely move. Thankfully, it was only a 24hour bug and apart from being weak and unsteady I was able to just look after Faith. A remarkable thing happened the respiratory nurse had arranged and pulled some strings and got us some portable oxygen cylinders from the hospital. Unbelievable! Wonderful! The way it worked the local hospital pays for the first couple of weeks of oxygen so that would get us going and she would push NSW Health to comply and give Faith oxygen. We were going home! After being told we would be in hospital for weeks we were going home!!!!!