One of our biggest fears, as parents, was seeing our children hurting and not being able to do anything about it. For two years of our daughters short four year life we lived our fear. We watched our daughter go from a fun loving little girl to a lethargic couch potato. It was a long hard two years and for those of you that did not get a chance to follow our journey it started with the stories I shared below.
We were challenged as parents daily trying to care for a child, whom by the way seemed impossible to ease. She was in so much pain that there were days she could not move. After Surgery we had a great recovery, for the first two weeks! Then we were challenged again by a scary amount of immense bleeding in her throat, nose and ear. It was horrifying and I am sorry for the graphic image, but this was something I feel you need to see to really understand.
We made not one, not two, but three trips to the Emergency Room and they did nothing. Just looked at me like I was crazy, because of course it would clot before we got there and without seeing the blood they would not even look, they just sent us right back home. So I was then sent back to her surgeon two more times, before he finally took her back into the operating room to find that the bleeding would never have stopped by itself. So she had an immense amount of cauterizing done! She was very brave through it all and we were able to go home with some packing in her nose and a new teddy bear!
After a couple weeks she seemed like she was getting better, but then to our surprise, our baby was miserable again! She developed a nasty infection from the amount of cauterizing they had to do. The doctor went ahead and prescribed her antibiotics, and we were back home in bed for the fourth week in a row! She was becoming very stubborn and she was missing so much school it was driving her crazy! It was hard, but we had to keep on our path to better, pain-free days.
So now that it has been almost another month we cannot even contain the excitement we am feeling to have our little girl back! She is spunky, and happy! She is the little girl that we watched slip away when the pain began. We were so afraid we would never get here, and now that we are here we are so grateful for those that supported us and helped us through this horrible journey!
We are now just waiting for our daughter to repeat the sleep study, and we hope that through the night everything goes well! We hope to wake to the technician saying that she is cured and she no longer has sleep apnea. Until our journey I never really thought twice about sleep apnea being a serious condition, but now I have a much better understanding it! I urge parents to look into sleep apnea and learn more about it!
I can officially say, that I am no longer embarrassed for the way I treated all the doctors along the way, that told me there was nothing wrong with her. I am glad I spoke my mind and told them that I knew better! I knew that something was not right! I knew that that baby cringing in pain on the couch daily, was not living the life she deserved. This coming Weekend we go in for our follow-Up sleep study and we are hoping we will get good NEWS!!