Payten will be getting her trach put back in.

Today was an emotional day that took some unexpected turns that left me feeling discouraged, defeated and sad. I went to bed last night feeling good, knowing that we had a plan in place and that everything would workout and Payten would soon be back to her happy self. I  did not expect that the news that the Doctor delivered to me this morning would be the final result in all of these breathing complications. And yes, it will still workout, but not in the way we hoped for, which leaves us struggling with our emotions.

 As I was preparing to go to the hospital this morning, Dr. Mancuso called to discuss Payten. Right when I saw his name appear on my phone, my heart stopped, for I knew it was not going to be happy or good news he was going to deliver and unfortunately, my instinct was right, his news was not happy news. When I answered the phone , he asked if it was okay to discuss Payten and I said it was, which he then proceeded to tell me, that Payten had the worst night she has had since her hospital admission and that he felt that Payten was in need of her trach again. He went on to say that her airway has become weak again, due to some regression in Payten's muscle tone, therefore the trach was a necessary step in securing an open airway that would ensure comfortable breathing for Payten . Not only was this shocking news to me, it was also very hard to swallow news, for  it solidified to me that her brain disease is indeed worsening and that she is for sure regressing because of slow atrophy of her brain. I quickly realized that no matter how prepared I am for this type of news, I still will never fully be prepared for the harsh/devastating news that I will receive throughout my daughter's life, informing me that she is going backwards, rather than forwards. When he gave me the news, it was as though someone had punched me in the gut and I broke down uncontrollably sobbing. Dr. Mancuso kept apologizing, then he started to cry and said that the harsh reality of Payten and her complications are never easy to face and that he was truly sorry to be the bearer of bad news.

After I got off the phone, I knelt down at the side of my bed and sobbed. I kept saying to myself,  we were so close, we were so close, she was going to have her stoma closed, why?! Why did this have to happen?!  Then I thought how ironic it was that just a month or so ago, I cleaned everything out and got rid of all her trach supplies, saying goodbye and thinking I was closing that chapter to my life and now it is suddenly being reopened , like a unhealed wound. Never did I think I would take the news of this harsh reality so hard, for we are old pros at this trach thing and it does not scare me, like it did at the beginning and I knew it was a real possibility that she would need it again, but with all this knowledge still comes the grief and pain that your child is suffering and regressing. The trach is not why I am so upset, rather I am so very sad that my Payten is getting worse and that this solidifies that we are taking one step closer to losing this battle we are facing with our sweet daughter. As prepared as I am, I know that when the day comes that we have to finally say goodbye to her, it will feel as though my heart has been ripped out of my chest with only a few pieces placed back in it, for today gave me a small glimpse into how that will feel and there are no words to describe the pain, all I can say is I do not wish it upon my worst enemy, for it is a pain no one should have to face, yet so many do and to those who have gone through it, I am sorry, my heart goes out to you, for I have only had a glimpse of this grief and pain and that was unbearable enough, so I can only imagine what you have gone through and I am sorry.

I know this is what is best for my daughter, for every time I doubt, I have flashbacks of the first time Payten recieved her trach at two months of age and the smile she gave me that told me that I had done right by her and that I did what was needed for her to breath! As scary and hard as it is to go backwards right now, I know I will see that smile again on Monday and at that moment I will again know that I have done right by her and it will melt all the pain and fear away, which will leave me feeling at peace, for that is all I have ever wanted for her, comfort, happiness and quality of life.

On the brightside, at least we had six plus months to experience life without the trach , right?! At least we know we did all we could to help Payten through all of this and that we tried, though it failed, at least we tried! This just happens to be par for the course when it comes to Payten's life and as much as it sucks to go backwards, I have full trust in her doctors, that they are doing everything they can to best help Payten live a quality life. Though I am sad and filled with heartache, I still know God loves me and has not forsaken me, rather he has entrusted me with this task, that I am suppose to learn from. I know that once I fully cry and release all of these sorrows, fears and pains, I will be okay and be able to move forward, but I need some time. So until then, I need friends. I do not need advice or judgements regarding this matter, rather I need  listening ears, shoulders to cry on and people to just show love and understanding towards me through word and deed, because this is a hard moment in my life to face and I need support. So,  please understand that I may be sadder than usual, but that it will soon be okay and I will get back to smiling and happy thoughts. I love you all and appreciate your thoughts and prayers. Surgery will be on Monday, however I do not have a time, but will keep you posted. In the meantine, I ask that if you could keep Payten in your prayers, I would greatly appreciate it. Much love to you all and may you all have a blessed night.