So as of today we believe a plan is in motion (but it's always subject to change!). We are in the process of getting Eden on the OR schedule with the ENT doctor to get the tracheostomy procedure. It most likely will be weeks before we can get the procedure so the plan is to try one last extubation before she gets the trach. If it works, then nobody will be sad to cancel that OR appointment! If she fails again though, than we will be more than ready to do what we have to do to help her progress.
Obviously a trach is not at all what we were expecting or wanting to happen for Eden. However, we have prayed about this a lot, and couseled with family, friends, and medical professionals, and we feel like this is the best option for Eden at this time.
The good news is that once she has recovered from the trach procedure we most likely will be able to start feeding her by mouth and that just puts us one step closer to going home.
We don't know yet how long she will have to have the trach. In fact, there are still a lot of unanswered questions that we have about it, but hopefully within the next couple days we will get all those questions answered. We have a care conference on Wednesday with the whole team of doctors and specialists so I think that meeting will be very helpful to get us all on the same page.
As far as the heart defect she has, the plan right now is to not go forward with the procedure. The cardiologist says it is not necessarily something that needs to be treated right away, or maybe not even treated at all. It's just unclear what, if any, problems are a result of her ASD. As of right now we don't know if it is playing any role in her respitory problems so we will move forward with the trach and if they continue to see problems in future cardioechograms than we may have to do the heart procedure as well. We will cross that bridge if we get to it.
It's heartbreaking to think of all that Eden is going to go through in the next couple weeks, but it is so good to know that at least we will be moving towards going home. The last couple months have just been waiting around without any progression so we are so ready for the steps we now have to take to get on the trail to coming home.
We love you sweet Eden and hope that we've made the right decisions on your behalf. We just want you to come home with us!
2 comments:
You guys know what is right for your precious one. She is tough, she has angels about her, strengthening and making her what she needs to be. You are good, prayerful people. We will pray for you too!!
Loving the cute head band and flower clip! All my love to you and your sweet girl!!
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