Brown and Pink Polka Dots : Hello Oxygen

One look around my living room right now you can tell it is different. There is a big noisy thing in the corner and tubing running around. Yesterday Jilli had her feeding pump sitting and between the wires and tubes in my house I felt like I was in the spider web room at Leaps and Bounds (props to you if you just got my reference)

Tuesday mid day I got a call from Jillian's pulmonologist about the 24hr o2 test. She said that there were times that while Jillian was playing her numbers would drop lower then they should. She said there were times that she did not think the machine was picking it up correctly but needless to say it still happened enough that we need to do something (as the person watching the numbers and seeing what Jillian was doing there was a direct correlation to o2 numbers dropping and Jillian playing) She said that Jillian needs to be on oxygen while she is moving around. She also asked about what times Jillian was sleeping and said that she did not love some of her numbers then so she is sending Jillian for a sleep study as well.

Wednesday morning I got a call from the pulmonology nurse with more of the details of the plan. I also got a call from the sleep lab and we scheduled her sleep study for the end of May (our May is already looking crazy and it has not started yet!)

In the afternoon I got a call from VNA saying they got the order and someone would call me to let me know they were on their way. A few hours later a man showed up at our house with all of the stuff. Jillian kept calling him "not daddy" every time she looked at him. He brought us one large oxygen concentrator, 4 small tanks and one large back up emergency tank. The back up emergency tank was broken when it got here so we are waiting for someone to bring a new one and the rest more little tanks for next week. He showed me how to set everything up (this part feels like a blur to me) and was on his way.
I then had the task of getting the oxygen cannula on my two year old. I put it and the tender grips (adhesive pads that hold the oxygen tubing to her face) on her. She looked at me like I had forsaken her and went on to scream for a while. We Facetimed with my mom and Jilli started to calm. Then we Facetimed with Mikaley and Jillian got to see her dogs (Jilli thinks one of their dogs is a kitty dog, lol). That was probably the closest (seeing it on iPad) Jillian has ever come to playing with a dog.
It took several hours to convince her to walk and play. She just wanted to sit next to me at first which I totally understand.
My mom came out and brought me dinner. I was so grateful! Brent has been out of town for work this week so it was nice to have a second set of hands to help me for a little bit (Brent flew back in this afternoon)

Now it is just figuring everything out... where to store the portable oxygen tanks, how to best tape it to her face (they gave us 4 sets of stickers to last the month... ie 8 stickers), how to use everything, remember all the steps the guy told me... ect

Today she went to day care. Since she only needs it when she is up and moving I did not put it on her until we were there. She pushed the portable tank (too heavy for her to carry) in a Little Tikes shopping cart which seamed to work well. Hopefully it continues to work. We are also trying to figure out all of the daycare logistics of her being on oxygen. I work in her daycare (Elkhorn has all of its 4K classrooms in daycares) and they have been great with all of Jillian's medical stuff but this is something new for all of us so we are trying to figure it out (Jillian is the first kiddo with this level of medical need that has attended this daycare).

Today she is doing a lot better with it. I am so proud of her. I know she does not love it but she is leaving it on her face which amazes me. I think she was equally mad at me today when she figured out Walgreen's forgot to flavor her mouth med and mommy did not realize it before giving it to her orally. The look I got for that one...

I want to say a HUGE shout out to the people who have gone out of their way to help us with this transition to oxygen. It is what she needs and is what is best for her and I am SO grateful that she is getting what she needs but it is still hard. There have been many emotions during this process and new things to learn, and I am grateful for the people who have stepped in and loved on us. I am grateful for the people who helped keep Jillian entertained on Facetime yesterday to help her with this transition. Thank you to the friends who have sent me text messages or facebook messages, they each touched my heart and made me smile. Each person who has rallied around us either physically or emotionally or spiritually has truly helped in this transition and I thank you!

It will probably be a little bit of a transition period of us getting our wings to do things outside of the house. The guy set up the one portable tank for me yesterday but after her using it at daycare today it is almost used meaning I need to set up the next tank myself (we don't have school tomorrow so we are hanging out at home for the day) With time we will become pros at the oxygen too just like her feeding tube, but for right now it is still new. We will probably take things slow for a bit her until we build confidence at how this all works and what we need to do. I was laughing in the car today as I drove home from work trying to figure out some logistics out and thinking about how most parents pack their kid a lunch to go to daycare... I pack mine medical amino acid formula and oxygen. I ask for patience as we figure this all out and understanding that we probably will be home a little more for a while and that is nothing against the world, just us getting use to our new normal (come on over... just don't get tangled in wires or judge the crazy, lol)