Addison is doing pretty well. for the past few days, she is holding steady. At times, they are able to wean hr oxygen down to the 70's and the oscillating vent down to 28, but then she will have an episode and end up back where we started. I feel like it is three steps forward and then four steps back. I know that it is just part of the roller coaster and I am thankful for any and every bit of movement in the right direction. We just really want to get her dependency on the machines weaned a little bit since when she has some of her episodes, they have to use all the support available with the oscillating vent to get her stabilized and if she were not to respond, the next step is ECMO.
They say that she is not stable enough for surgery right now since even changing her diaper can put her into an episode and cause her stats to drop.
I actually got to hold her hand last night. She had a really good day and her stats had been stable for a while, so they told me that it was OK to touch her. When I held her hand, I swear my heart grew three times bigger. She is so strong and has been through so much and I love her so much for that.
Surgeon Appointment
1 year ago
2 comments:
Thank you for the updates. I feel like I am checking every hour. She is so at the fore-front of my thoughts and prayers. Sounds like she is doing well and avoiding ECMO, which is great! She IS a princess, and she already has her own agenda--strong willed "CDH FIGHTING" girl! I hope you and Jason are taking care of yourselves (and each other). Once again, if you need ANYTHING.....
It brings tears to my eyes that you were able to hold Addison's hand. I remember doing that with Nayeli and it brings back those feelings and emotions that you are feeling right now. We are praying that Addison continues to hold steady and get stronger so she can stay off of ECMO and be able to have her repair surgery.
Lord please help Addison get stronger and help her fight this battle against CDH. She needs your help Lord, please help her get stabilized so she can have her repair surgery. God please look after Marion and Jason, give them strength and keep them healthy so they can be with their precious little girl everyday.
Amen
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