We always knew from very early on that Riley would most likely come home on oxygen support. We felt like coming home on oxygen was no real concern as it could be alot worse. Being born at only 515g and having teeny tiny lungs she would need all the support she could get. Originally a few weeks before Riley was due to come home they mentioned that she would come home on a low dose of the steroid she had been on pretty much 50 % of her time in NICU. The steroids helped to support her lungs and give them a boost. Low and behold Riley proved the doctors wrong once again by stopping her steriods before she came home! She was slowly becoming stronger by the day even though she was just under 3 kgs in weight!!
The oxygen training was quite easy really. The 20 mins they do going through how to use everything was a blur to me, lucky Justin was paying attention at the time and knew how to use Oxygen tanks already! It was such a crazy time taking Riley home, so lot went in one ear and out the other as I was way to excited to get my second baby home. We got given 3 small tanks that fit into a backpack type carrier as she came home on 62ml per hour (Not a lot of oxygen). Dealing with the oxygen and the pram was easier then we thought. Initially we popped it under the pram but then we realized it actually fit on the foot well! Saved so much room! In the car it just went on the floor under Rileys seat, nice and easy. Getting home we would sometimes forget that she was attached to something and would walk away but be jerked back as Riley got pulled back to the tank. Woops!
We soon learnt to carry it on one shoulder, with Riley on the other shoulder. We never bothered about an extension cord as we already had her connected to the portable tank so it was just as easy to carry that round the house with us. It took a while to get used to taping her prongs correctly. We tried quite a few tapes and sizes of cutouts. Dozens of times we would tape them crooked, tape them to high up her nose blocking her nose or not in her nose at all. Ergh! The nurses make it look so easy! Once we figured out how we liked taping it, it became much easier with replacing it every few days. When we did replace the tape we would try and leave her off the oxygen for a few minutes while we usually gave her a bath. She loved these few minutes!
Above are the two types of tanks we had at home. One on the left is the portable smaller cylinder whereas the one on the right was the large one where we would connect her overnight in our room with an extension. We always have at least 2 spare cylinders in the garage incase. These certainly came in handy when Riley got sick with bronchiolitis 2 weeks after coming home. At home we turned up her oxygen to 125ml which goes through the small tanks a lot faster and when she was discharged she came home on 125ml too.
Every 2 weeks we were going to Perth Childrens Hospital for check ups with respiratory where they would do a 15 min test to see how she saturated without her oxygen turned on. If she sat above 96% they would turn her oxygen down. Until recently Riley was on 31ml of oxygen day and night but she has now come off day oxygen all together. Wow! What a change from the doctors predictions. They initially thought she would be on home oxygen for at least a year but she was actually only on home oxygen during the day for 2 months! Night time oxygen though is still continuing and she hates it going on ! Lucky we dont need the tape looking pretty as some nights it is on horrendously! She is such a wriggle worm ! It is so funny how she hates it so much ! Can’t blame her though as she has always had something taped to her face 24/7 until recently.
We are now waiting for the results of her sleep study to see if she is strong enough to come of oxygen all together…
Crossing all fingers and toes! But no matter what the results are we will support you through everything Riley Bear xx