Wow, the last few weeks have soared by and it has been a few weeks since I wrote my last blog but so much has happened. We have packed up our house, sold it and bought another, we have been to Brisbane for Faith's sleep study and moved into our new low set house and have been unpacking. It has been crazy, the days are filled with all the normal activities but so much more.
Faith has and is coping beautifully. Last Monday we headed to Brisbane to have Faith's 6 month sleep study, I couldn't believe it was in the same week as we were moving. Sleep studies always equal no sleep for us so I thought, how will we do it and move in the same week. A thought that is always in our minds is, is this the time Faith will come home without oxygen or are we getting our hopes up again. It is so hard to have hope but not get carried away and excited. But I was excited at the prospect of no oxygen even if I was getting my hopes up. We checked in at 5pm and settled in to our box room with no windows and iron door, I know they need the big doors to keep the sound out but I feel like a princess trapped in a tower or when the study starts a gold fish in a bowl as Faith is filmed and they can see her but we can't see them. The last sleep studies Faith has had she screamed all the way through and then the nurse putting on the electrodes and wires. Then Faith screaming herself to sleep and then not sleeping much as after she calms down, realising I am sleeping in a bed next to her and maybe I should talk to her and play all night. So she generally talks the night away with little sleep for them to study her oxygen saturation's. But this time Faith just complained about the wires and electrodes and she settled pretty peacefully to sleep only waking later in the evening for a chat, waving at me and full of beaming smiles. Very lovely! Faith was sleeping but I could not.
So I played with my phone, wandered Facebook, forums and emails, but still sleep evaded me. I was waiting for when the nurses would arrive to wean Faith off her oxygen. And they came, sometime after midnight. I was awake more and more and then the horrid stress headache arrived. I didn't know what to to do, so I prayed, I prayed for hours, I could hear on occasions the oxygen saturation monitor and prayed harder that she would hold a good saturation and she wouldn't need the oxygen. I talked to God for hours, I talked to him about Faith and what being off the oxygen would mean (as if he didn't know :)). Faith would be more free, we could go on a slippery slide together, we could go swimming without being attached to the pram and limited where we can go because of hazards of tangling, so many things. I spoke of the Bible and the miracles Jesus did then and how I believed he could do it now, I felt like I was the lady reaching out to touch Jesus' cloak, if only I have enough faith. With so much that has happened with Faith, I don't like to get to excited but I figured the best option was to pray and pray as I lay in bed watching Faith sleep.
Early morning I dosed into dreamily sleep and woke to Faith stirring. The nurse came in and it was true Faith was still off the oxygen but the nurse had to put her back on until the respiratory specialists read the data and report. Faith dropped her saturation's down to about 87 or a little lower about 5 times when she was in REM (dream) sleep. The last studies she hadn't lasted off oxygen for more than an hour but this night she lasted 6 hours. Could this be happening might only she need oxygen when she is sleeping, I tried not to get to excited but it was hard not too. I praised God for his goodness and how he answered my many prayers. Faith's specialist appointment was 6 hours away she we headed back to our motel for some rest before we faced the morning as it was still around 6am.
To fill in time we headed to Southbank and had the most yummy morning tea together at Max Brenner Chocolate Cafe, mmmmm was really good. We also saw that the QLD Art Gallery had a exhibition on called the Portraits of Spain. We used to go to art galleries before Faith was born and now we thought let's take Faith to her first exhibition so we lined up and wandering through the artwork, Faith chatting and squealing and eventually falling asleep. We had some time for some lunch so headed to our favorite cafe before returning just in the nick of time for Faith's appointment.
We waited and waited....eventually we were called in and the respiratory specialist went through the report with us. There was improvement since the last study but she still needed the oxygen at night as she didn't take deep enough breaths when she was in REM sleep. He chatted away and then we asked well, can she come off oxygen when she is awake? Our breath held, the doctor flicked through the report and Faith's history, rubbing his chin, he said yes, I think so. Faith can come off oxygen when she is awake but needs it for sleeping. Wow! Praise God, at last, a step forward with her oxygen, she is getting stronger! Let the freedom of less oxygen begin.