Took Brant to the Children's Clinic in the Pavilion for Women & Children at Providence in Everett today. The appointment went pretty good- we believe that he has a virus that has caused his de-sats and lower than usual numbers. There is nothing they can do for him but let it run its course. We will be leaving him on oxygen until he gets over the virus and then will re-start weaning him off throughout the day and in a month or two re-visit the 2 night oximetry test.
With that being said the pulmonologist did say that due to the time of year and flu season, if we were to get him off oxygen in the next month or two we should expect to have to put him back on at some point because of any illness that he may get. She also said that if he keeps getting little viruses like this or can't seem to kick this in the adequate amount of time they may want to keep him on oxygen until Spring and when we are out of flu season.
We will go down to Seattle to visit his regular pulmonologist November 21 for a check-up. The original plan was to have an ECHO done and a few other tests but those have been cancelled due to him not being off oxygen. One worry they were thinking about with him is possible Pulmonary Hypertension and that being the reason for the de-sats but after today she doesn't think that is it. Plus she said due to the ECHO he previously had coming back totally normal, its not common for a child to develop Pulmonary Hypertension if they had no signs of it previously. She said she could schedule one if we wanted to for peace of mind but was clear that she did not think that was going on.
I really hope that we don't have to keep him on oxygen until spring. He gets so sick of the tubes in his nose and pulls them out already. He's only going to get more active and will probably be crawling in the next couple months so that is going to be really hard. But I just need to keep saying like I've said throughout this whole journey, You gotta do what you gotta do, we can handle it.
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