Brown and Pink Polka Dots : Pulmonology

I'm Today we had a really good pulmonology appointment!

Jilli has gained a little weight and height!!! YEAH! Oxygen has really helped her to grow, apparently oxygen was a piece that we were missing to her growing... she needed more oxygen to grow, imagine that!

During the appointment we were able to talk about bumping her oxygen up during PT when she needs it. One of her main PT goals is working on walking up and down stairs, however this takes a lot out of her little lungs. Her O2 stats drop into the 80s when climbing stairs on oxygen so we agreed that if she is going to be doing really hard things in PT (like working on stairs) that we are going to bump up her o2 a little. Hopefully it helps!

We also came up with a plan for cold/flu season. The hope is to keep her away from people that are contagious this winter by not having her in school and making sure people who are sick stay away (yes, this is my request, if you have any contagious illness, please visit us after you are better, we would still love to see you, just can't get germs in her little body)
Since this is her first winter on oxygen at home we needed to come up with a plan for what to do when Jillian gets sick. Our guideline has always been before that if we thought she needed oxygen to take her to the ER but what now that she is on oxygen? The plan has not changed much because Jillian is on oxygen for lung muscle issues not illness in her lungs. If she is needing more then a few nebs then we need to take her to the Ped just like before and if she needs more nebs then every 4hrs then we need to go to urgent care or the ER. Even though the plan has not really changed it is good that we are all on the same page and that we made a formal plan together. They do not want us to up her oxygen when she is sick because they don't want to cover up something that could be serious.
A big thank to my little bro who came and hung out at the house today while we went to the appointment to wait for oxygen. They have been showing up anytime between 11-3pm on Thursdays which makes it tricky to plan for. I was grateful he could come help me out so I did not have to rush home from the doctor.

Also since going on oxygen we have been able to take Jillian off of her nose spray because her nose does not run all the time anymore! It is always nice to get her off meds. Oxygen has a lot less side effects then meds, if oxygen helps her this much and has helped her to get off a different med then I am so grateful for that! Oxygen has helped her SO much. I wish we had realized sooner how much she needed it and pushed for it sooner. She has only used 5 viles of neb meds since going on it (the includes when she had croup in June), I think this is a record for her since she started using a nebulizer at around 6mo old. Oxygen has helped a lot and for that I am so grateful!

We were also told we did not have to go back to pulmonology for 6 mo! Thats huge in our world too! They want to try to keep her out of the office during the worst of cold and flu season (she can't get a flu shot because she gets really sick from them... like end up in the ER not breathing well sick) so they said to just keep doing what we are doing (we are also going to up her maintenance inhaler for the winter to help keep her lungs from getting sick) and check back in the spring! YEAH!