Our New Journey

It's crazy how the days fly by so fast, but so much happens and changes each day that just thinking back to Friday feels like weeks have gone by. Ellie spent all of Friday on bipap. They tried several different cannulas and prongs to try and find the delivery method that helped keep her airway open the best, but didn't have consistently good results with any of them.

At the end of the day Ellie was still retracting severely and not exchanging much air. They tried putting her on heliox (a combination of oxygen and helium). The idea is that helium is not as dense as oxygen and nitrogen that are in the normal air we breath and therefore it is easier for it to get past her obstructing. The only thing it seemed to do was make her cry a little higher (even with how concerned I was it was hard not to laugh at the sound of her cry), but didn't help her breath any easier. Late that night Ellie got really agitated and was crying for 2 hours straight. When she finally wore herself out and calmed down she just stopped breathing altogether. She would not take a breath on her own unless we were agitating her. So they did an emergency intubation. The doctor told me after she had never been so nervous about an intubation because of Ellie's complicated airway, but it went flawlessly. I was so grateful to have Scott here with me so I didn't have to go through it all alone. Now that her airway is secure and Scott is here I am breathing much easier.

Yesterday the doctors discussed with Scott and I where we go from here with Ellie.  The surgery she had last week is effective in relieving the symptoms of laryngomalacia in 90% of patients. Unfortunately, Ellie is part of the 10% who it does not help enough. Friday night she proved that her little body can no longer keep up with the demands of breathing through her obstructing airway and so the last option we are left with is a tracheostomy. A trach will create an airway below her larynx and bypass the problem until she can grow out of it. This has been my greatest fear since she was diagnosed, but as I've watched her struggle this last week I realize we have no other choice. She will be having surgery tomorrow to place the trach. The doctor said she will have the trach for 2-3 years until she grows out of her laryngomalacia.  He told us stories of kids who have had this done and how they thrive and lead a perfectly normal childhood. Her quality of life and development should improve drastically with this since she will no longer have to spend every ounce of energy she has to breathe. She will remain in the hospital for 2 weeks after surgery for the trach to heal and for us to be trained on how to take care of it. It is going to be a really big adjustment and extremely overwhelming for a while I'm sure. But as the doctor said soon doing all of her trach care will become as routine as combing and doing her hair. I am not as worried about how this will affect me as I am about what kind of life Ellie is going to have. I just want her to be a happy little girl. I want to get to know her and see her personality shine through. I want her to be able to run around and be carefree like a toddler should be. I hope that this will make all of that happen for her.