I had mentioned Kaesyns ears in the last blog. The Friday we went to our old ENT in Topeka because our Ped. ENT at CMH had no openings. We got there and Dr.F just didnt know what to do, he had no idea what to say or do. He was soo appologetic and kept letting me know he was so sorry. He got us squeezed in to our ENT in KC Monday. So Monday we went, we got the coulture back and it came back as MRSA. I had no idea how serious MRSA was and how it affects people for a long time. However with the right meds we were able to get a handle on things and get rid of it. We went back for our check up today and she said everything looks just the way its supposed to! WHEWWW!
So it has been a year since Kaesyn tested negative for Cystic Fibrosis. It has been nearly a year since we started this adventure and we are no where almost finished. Within this year I have gone through a parents worse nightmare. I have been able to learn that literally EVERY BREATH COUNTS. I have met people I never would have met. I have bonded with people in a way I never thought was possible. I have learned that Doctors are by no means perfect, and they do and will mess I up. I have come to terms with letting things play out the way they will play out. I have no power in changing things. I love my life a lot more now and I know my purpose. I have seen my baby boy stop breathing. I have seen him change colors. I have seen him at his worse. Not something I can say I ever wanted to see, but because I have I appreciate soo much more.
Lately I keep thinking back to an ER trip. I did not realize until recently that they were serious, they were worried about Kaesyn. They whipped his o2 on before they ever took his pulse ox. They ended up letting us go, promising if it got worse wed come back. We obviously ended back up there. At the time, it was another ER trip for us, I had no clue that I probably could have gotten away with calling an ambulance. I know that I was not freaked out as much because it was not very "less than normal" for him. He always struggled to breath. He always had dark sunken in rings under his eyes. I am so proud of my son. He has come so far. Here he is almost 2 and has made such a huge improvement. We no longer take his pulse ox every night. He hasnt had his o2 in over a month. We have graduated from neb treatments to inhalors, however that will change as soon as he starts to breath any different. I have noticed he seems a little winded today but we will see what morning brings us and hopefully itll be a few doses of his flovent and atrovent inhaler before the neb meds!! Kaesyns bday is coming so fast. I can not believe my baby boy will be 2 soon. He is getting ready for potty training and everything way too fast. Hes my superhero and Im sooo proud to be his mommy!!
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