-Jilli's pulse ox numbers did not look great at the start of the appointment because she walked onto the scale and then over to be measured without oxygen on. Even in that brief interaction her lungs showed her what they do when she walks.
-Jillian's CT actually looked better then the dr thought it would. There is some scarring and there are some inflamed airways but it is better then she was guessing it would be knowing Jillian. The "collapsed" portions are probably from her not taking deep breaths when she lays down. She showed me the video of the CT.
-We all agreed that Jilli needs to stay on oxygen. It is helping her so much. She said the tests that they have done don't necessarily show a huge data need for it however how much better she is going on it most definitely show she needs it and we are just not able to do the right kind of test for what is causing her to need the oxygen because there is not a developed test for that. She says this points to it being a cellular level needing the oxygen (which points more to the thought of a muscle disorder)
-She asked about genetics. We talked about how Jilli's genetics dr is gone and how I have not heard back from anyone in genetics. Prayers for genetics to communicate with me would be great. I keep reminding myself that God has the timing on this and there is a reason, just in the midst it feels crazy.
-We talked about what we needed to do so Jilli can have oxygen at Disney.
-We came up with a plan for next June, since Jillian always get croup in June. I am glad we have a pro-active plan.
-We are going to try to only do her one med once a day until fall and then bump it back up as the weather gets colder and into the time when she typically struggles more. We try to balance and only give her as much as she needs at any given time. All medications have side effects so we try to gauge how much she needs to best help her little body.
-She agreed that its good to keep Jilli out and socializing now while the weather is nice but that its a good plan to keep her home more when the weather gets yuckier and when there is more illness. She is hopeful along with us that maybe with her not in daycare this year that she will get less germs and that will help her lungs.
-We asked her what we should do to best help Jilli though this winter and she said to do nebs as soon as we notice anything (which we do) but that other then that there is not a lot we can do. Her lungs are in this grey zone, where she is not quite bad enough where insurance will pay for the vest system to help her get the gunk out. The hope is that as she gets older what we can teach her techniques to help get the junk out of her lungs.
Overall I felt really good about the appointment and I felt like we had a really good discussion. We ran into our new GI dr on the way in and talked with her for a couple of seconds (we were running a little late, parking REALLY sucks there right now)
This afternoon we put together her tricycle that she got for Christmas. It came in a lot of parts so my mom and I worked together and then we went to Target to get her a helmet for her bike. It has princess on it so she loves it (her head had always been a little on the big side... she may still wear 12mo clothes but needs a 3-5yr old bike helmet cause the younger kids one was too small) She loved riding her bike and I loved that the parent handle controls which way it turns and that she can rest her feet on the pedals and I can push it until she learns how. I also liked that her oxygen and feeding pump fit on her tricycle.
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