About a month ago Raelee, Ellie, and I went to the hospital to visit Jon at work. Raelee was sitting on Jon's lap when I looked at her and thought to myself, "weird, her lips look like they are blue". When I realized they were actually blue and it wasn't just my eyes, I mentioned it to Jon. He agreed they were definitely blue, and we took her down to the l&d nurses station to check her blood oxygenation levels. Once we got there her lips were no longer blue and her levels were just fine. We were all a little perplexed, but since she was acting completely normal while they were blue we decided to just keep on eye on her instead of taking her in to her doctor.
About a week later they turned blue again. Same type of thing happened. Her lips turned blue, but she was acting totally normal. She wasn't choking, gasping for air, coughing or anything. both times they were blue for less than 30 seconds. I contemplated taking her in at this point, but knew they wouldn't know what was going on. A couple days later, her lips changed colors, but didn't turn as blue as they had previously. They had a definite blue tint, but not bright blue. Then that started happening quite a few times that week. Never super blue, but a blue or purple tint (or sometimes even colorless) to them. She had also developed a small cough. It wasn't consistent, more like a cough that made me thing she was choking on something, but never was. It almost sounded like she was choking for air for just a small second. I decided to take her to her doc at this point. (Feb 23)
The doctor ran labs and did a chest x-ray, both of which came back normal. He then told me that if she has another episode, to just take her into St. Francis in Tulsa to get an EKG and ultrasound. She had a few of the mini episodes with her lips slightly changing colors and the cough, but I didn't feel like that was enough to take her into the ER.
There were a couple times that I noticed she started breathing differently, almost like a wheezing sound. It was just for 10 seconds maybe, and every time I heard it by the time I got over to her, she had stopped. Yesterday, she had 4-5 episodes of breathing like that, so I decided to take her into the ER.
I dropped my older two with a friend and drove into Tulsa. Once I got there it was the quickest ER visit I've ever had. Very little waiting involved, which was nice. We got right in, and they came right in to examine her. I had taken a couple videos of her breathing, so I showed them and explained the rest of what was going on. They decided to check her oxygen and blood pressure on all 4 extremities, along with an EKG. The EKG was horrible. Raelee screamed the whole time. She had to be on her back the whole time and she kept pulling the wiring off. It took more than 20 minutes to get the wires to stay on long enough to get a good reading (which took maybe 45 seconds). Raelee finally calmed down when I kneeled down next to the bed with my face a few inches above hers calmly saying "shhh shh shhh" over and over. Raelee did not like all the different people touching her. She was ok with the people that came into the room at first, but once they started touching her she freaked out. Then it got to the point that she would cry anytime someone would come into the room. Poor girl was scared of the nurses/docs. There was no blood draw or anything that actually hurt her, just lots of sticky things attached to her and the blood pressure cuff.
The EKG came back normal, along with her blood pressure and oxygen levels. The doc came in and said she was able to rule out any major heart complications, so that was great! She did say that she's unable to order an ultrasound bc she isn't the primary PCP. She thought maybe it could be a TET spell. But of course she couldn't say for sure without an ultrasound.
So now I have to call her PCP to get him to order an ultrasound with a pediatric cardiologist. Hopefully we will be able to get in to see one before we move. (details on the move to come in another post). Of course it could be something other than TET, that was just her guess. Maybe it is nothing at all. Some kids just get blue lips (it has to do with the veins in the face), although that does normally start happening at an earlier age. At this point, we don't know much, but hopefully we'll get some sort of anwers soon.
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