Payten Update!

We saw Dr. Panesar today for a follow up. There we discussed Payten's new diagnosis's GTP Cyclohydrolase Deficiency and how that affects Payten. We also discussed Payten's sleep deprivation and irregularity and what that could be from. We talked about her secretions and how we are having to suction her a lot lately and how they are really think and stringy. We discussed her ventilator and about getting her a new vent that would ventilate her better. From our discussion, it was determined that Payten has a respiratory infection of some kind and that is why she has the increased secretions and is in need of suctioning so much. Dr. Panesar put her on a couple of meds. and increased her albuterol treatments to 2/3 times a day along with her CPT Vest treatments. He said he has no idea what would be causing the sleeping issues, he thinks it is Neuro related and has ordered a sleep study to be done again to see if there is more extensive seizure activity or something else related to the brain, that is causing her to not be able to sleep. Let's hope it will help in giving us answers, so that we may all sleep again soon!!! Also, when we go into the hospital in a few weeks, Dr. Panesar will order her new Ventilator and do some trials on it there, so that we can get the settings right and not have to worry about it when we get home! Yay! Maybe this one will be more portable! All in all it was a good visit, we still have some unanswered questions, but hopefully with the things that are going to be happening in the near future we will get those answers! Payten is doing okay even though she is sick, she is still her happy little self! Thank you all for your love and support. Good night!