I'm sure you can tell from the title alone that the extubation today was not successful. She lasted about 5 hours off the ventilator, about an hour longer than the last attempt. The story really was the same though. She struggled... a lot... and she just got too tired and had to stop.
They tried everything they could think of. She was even sedated to help her relax and stay calm. Unfortunately though she was pulling too hard and gasping for air.
The ENT doctor came to do another broch test on Eden while she was off the vent. She got her scope down in there and looked around and still didn't see any significant upper airway problems. She said everything looked open, with little secretions, and she didn't see any malasia (folding of the airway).
So it doesn't appear to be an airway issue...
The neonatalogist doesn't think it's a lung issue though because she is on such low settings, with low oxygen requirement, while she's on the vent. It wouldn't make any sense for her to be on such low settings if she had a lung problem.
So it doesn't appear to be a lung issue...
We are all extremely confused.
The neonatalogist said this is very rare and he's never seen a case like this before. He thought for sure today would work because they were prepared and ready right down to the smallest detail.
I hate to see pictures like this but feel it's important to document for Eden. This is during her time on the CPAP while we were waiting it out.
Fortunately, he was able to reintubate her without too much trouble. Luckily that went smoothly this time. We have had some pretty traumatic experiences with reintubation in the past so we're grateful that this went better for her.
I can't even begin to express how I feel right now. I'm looking over at Eden and she is so exhausted and sleeping so deeply that her mouth is hanging open and her arms are limply laying at her sides. She is extremely worn out physically and hasn't moved in about 4 hours.
This is exactly how I feel emotionally. I feel like I need to just shut off for a while. There's just no break from the stress, concern, fatigue, worry, fear, pain, guilt, anxiety, and sadness. I'm not sure how much more I can take...
What choice do I have though? This is my baby. For some reason she was chosen to come to us, and she was chosen to come this way. I don't understand it... it's not fair. I hate that she has to be the one to struggle and hurt. I wish I could trade her places - or at least just be able to hold her and tell her I can fix it. But there's nothing I can do except love her, support her, and wait.
So Eden, here's my message for you - I love you more than I can ever explain; more than I thought possible. Someday you will read this and understand what a fighter you are. You continue to amaze me with your strength and determination to fight your way through whatever comes your way. You tried hard today and really gave it your all. There's somthing not right and we are working to figure that out. We continue to pray for you daily as your battle continues. We will always be right here by your side. We love you and are so glad that your ours!
5 comments:
We've been thinking about you guys all day and praying for you. I am so sorry that you are still waiting to figure things out. Your little family is so strong and we love you guys so much. Just keep taking one day at time and things will pass. Eden has the best,most dedicated, selfless, and loving parents in the world. She is a lucky girl to have a mom that stays with her all day, everyday, and loves her beyond words. Hang in there Lisa and Brad!
I am so sorry! That poor little girl. She is such a strong girl, and we are hoping so much that they figure out what is wrong. I think it is interesting too because she use to actually be on the C-pap machine right? So that seems crazy that by now she wouldn't be ready to go back on it. Lisa I feel so sad for all this stuff you are going through. I wish I could just take your place for a day so you could have a little break! It must be so exhausting in every sense. Well keep being strong and know we are thinking about your little family all the time!
Lisa-- I'm so sorry that it didn't work out this time. I can't even imagine what you must be feeling and going through right now and I wish I could say or do something to make this easier on you all. You are always in our prayers and thoughts. Please let me know if there's anything I can do. Hang in there, keep fighting, Eden- you have so many people praying for you.
Poor sweet Eden. Every time I see pictures of her with all those wires and things attached to her and poking her I feel such real pain. I can picture my children having to go through that and it helps me to really feel the sadness you must be going through. I am so sorry, Lisa..... We will continue praying for you guys and our sweet Eden. We love you guys.
Lisa my heart is breaking for your sweet family. I am just sitting here crying from one mommy to another I am so sorry. I can't say I understand what you are going thru but I do know the love you can have for your children and the hurt you feel when they hurt. I just want to pick sweet Eden up and love on her!! Keep going and being strong. Our prayers are with you.
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