A Fight for Oxgyen and a 1st Birthday!

The sun is shining which is a rare thing as it always seems to be raining at he moment. It is so nice to be home. Faith seems better within herself with the oxygen so that is a good thing. She doesn't pull at the nasal prongs but rubs her nose a lot. So her nose doesn't dry out from the oxygen we spray saline up there a couple of times a day. I think this annoys her more than the prongs. Faith's oxygen concentrator arrived a few days after we got home and we now have a long cord so we can wander around the house. The concentrator has a sound like a space ship and takes a little getting used too. We also found out that we were allowed two small portable oxygen cylinders a month. So that is a help. Don't want to be stuck at home too much. As usual we are home a short time and Faith's vomiting and sickness starts again, the sweats and neuropathic pain. We seem to get a glimpse of Faith being well and she gets sick again but at least now we get a week here and there. Hopefully soon it will be more good days than bad.

We received a phone call from the Brisbane hospital informing us that our application for oxygen with the NSW government has been rejected and that the company that supplies the oxygen could call and ask to collect it. She said that we shouldn't give it back, the local hospital was going to have to cover the cost until this is sorted out. We received a letter saying that Faith doesn't meet the criteria for oxygen. The letter didn't state the exact reason why but apparently it is to do with the Arnold Chiari ii malformation not being recognized. The NSW government department apparently thinks that if the Arnold Chiari ii malformation is causing problems then she should have had the oxygen from birth. What has that got to do with it anyway, she needs it now so that should be all that matters. The Brisbane hospital is working hard to get this sorted out and we decide a little bit of political pressure won't hurt so we contact our local member for State government and get him involved and surely he can help.

We were told that there was a lot of arguing and debating between the hospitals and different departments and we also wrote a letter of appeal. Another reason they used, was the policies they used was for adults was the same policy for children but because of this some areas of pediatrics were overlooked. After a couple of weeks our local member for government managed to get an extension of a couple of months until Faith could have another sleep study and that report would be provided to the NSW health. The same day we found that out the company providing the oxygen telephoned and said that they were coming to collect the concentrator and we said that they would have to contact NSW health as we were allowed to keep it. At least we have the oxygen for now.

Faith's first birthday was coming up and I found this hard to cope with. I had thought that by now life would be calmer or at least we would have a well baby and she would be progressing. Sadly, Faith was still really sick and a year was about to pass and we seemed no further forward and if anything we felt like we going backwards at times. So, sadly the arrival of Faith's birthday, though a celebration of her birth and a blessing to us, was hard, as it just reminded me of the day Faith got taken away to NICU and the sickness started and I didn't feel much further along. Each day we didn't know whether she would be sick or well so even though we really wanted to have a party we couldn't as we knew the risk of her being really sick was high or even that we might be in hospital. We seem to be there a couple of times a month now.

Faith 1st birthday came and she was unwell. We sang her happy birthday and tried to be happy but it was hard. I think to her it was just another day of being sick. Faith was still not eating much pureed foods as we would get further ahead with pureed food and she would be so sick and she couldn't eat again so back to bottles. We just seem to be going in circles and a few days later Faith was back in hospital, this time the local hospital. We were only there a few days and she was transferred back to Brisbane for a possible shunt malfunction.