Every time I think I am going to be able to update more, it gets longer until I do haha! August was a very bust month for us, so let's see...
*We had appointments at the beginning of August with ENT and her surgeon.
*She had an appointment with her pediatrician on Aug. 10th because I thought she possibly had a UTI. Awful, awful appointment as I had to watch 3 people try for 30 minutes and were completely unsuccesful at getting a catheter in. So she had to come home with a bag taped over her lady parts to catch the urine for a sample. It ended up being nothing.
*She had a sleep study done on the night of Aug. 16th. That was another pretty awful experience. We had to be there at 6pm. We got through registration, talked to the doctors, nurses, and techs. So it was about 7pm and we had nothing to do until it was time for her to go to sleep! I have no idea why we had to be there so soon. We went and visited some of her NICU nurses, went to the cafeteria and got something to eat, and then went back up to the room and played and watched t.v. until about 9:15. The tech came in and started putting everything on her. She had electrodes stuck ALL over her! There were at least 20 on her head and face, 2 on her chest, 2 on each leg, 2 belts around her chest and belly, a nasal cannula, and a probe taped to her upper lip. I got her to fall asleep pretty fast but as soon as the tech came in to cap her trach she woke back up. Long story short- she could not tolerate her trach being capped and we had to take it off at about 1:15 am. She woke up a couple times and woke up at 5 for good and we got ready and went home.
*She had an appointment with her Pulmonologist on Aug 26th. She wanted to see her to discuss the trouble she has been having at night (low oxygen, apnea, etc.). And we got the results of her sleep study (I will get to them!).
(OK, I have been trying to write this post now for 4 days haha! No wonder I don't post much! So I will just post what I have and come back and update again when I can with the rest!)
It's such a long road. Hang in there!
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