Thought I would leave an update, since I have not in a few weeks.
Kaesyn was admitted into Childrens Mercy the Friday after he was released from our local hospital. His stats were still pretty low, but as his ear infection started to clear they got better. We stayed Friday night in which he needed oxygen that night, and Saturday he didnt, so Dr. Escobar released us. I have to say I was sooo irritated leaving again with no answers. I had this horrible feeling all through my body and it was not a good one. We failed Kaesyn again, even though he did not need oxygen and he really wasnt wheezy, it was only a matter of time until we were back with him having all the symptoms. Why not figure everything out now?!? Its just crazy how fast it changes. Someone explained it perfect, children with TBM can be playing like a normal healthy child their age, the next they are gasping for air and needing oxygen, knocking on deaths door. Its scary, and I knew leaving the hospital Kaesyn would be sick again, and we would have to go through it all over again. BOY WAS I WRONG, Kaesyn has been doing SOO well, I would say the best he has ever done. It brings such a huge smile on my face, I love not hearing crackly sounds from his chest when he breaths, I love seeing a 98-99% on our oximeter, with the occasional 100%!!! Its the greatest feeling in the world, but then reality sets in and you know it wont be like that forever. At somepoint Kaesyn will get sick again with what should be a simple cold, or earinfection and be admitted into the hospital again! I want to say maybe he has outgrown it, but I just really dont think it happens like that. I think it happens over time, and it gradually gets better, not rock bottom and then perfect. So I have learned that I need to take everyday for granted, I need to love watching him play, I need to love his quirt breathing, and when the day comes I need to worry again I will, but until then Im going to smile with joy that my baby can be a 1 year old. So needless to say everything has been AWESOME around here. Gabby will be on spring break so we will be going to Oklahoma to visit their Grandma Lisa. Im excited to see my mom, since I havent seen her since christmas which is before all this crazy stuff has happened! We will have to bring an oxygen tank just incase. As well as his diagnosis sheet and treatment plan so that if anything happens Doctors will know how and how not to treat it. His med list has shrunk A LOT!! Thank Goodness! he is now just on Prevacid, Atrovent and Pulmicort.
We see the pulmonologist April 8th, we see the GI dr for a consult on the PH probe April 2nd, and we moved his head CT scan to May 12th. So we have a few appts coming up. Spring has also arrived, yesterday was a beautiful day and we spent a lot of time outside, and today we are having a spring thunderstorm! LOVE IT! Today will be a lazy day, tomorrow we will cleaning/packing getting ready for our trip!!