Hannah was extubated at 10:05 am today and reintubated at 10:55 am. Within 10 minutes, I knew that she was not able to breathe the way they expected. They tried a lot of interventions, but nothing worked.
The attending is waiting to hear from Dr. Roy, Hannah’s ENT. She wants to talk to him about doing a “deep broncoscopy” in the OR to see if there are some physical issues with her airway, either related to her disease or related to her Gaucher’s. She seemed very puzzled that it did not work and that she decompensated so quickly, and she wants to rule out sedation issues as the reason.
I’m not getting my hopes up. About 15 minutes post extubation, I was holding on to Hannah and just apologizing to her. I felt so horrible for her. She was struggling so hard. It broke my heart. I think watching her struggle to breathe, struggle when agitated, and just overall uncomfortableness is making me stressed out and completely sad.
Ugh. I am so sorry it was not more successful and that it was so traumatic. Hang in there!
I have been reading your blog at a distance for a while now (found you and Hannah through Twittermoms special needs group). I just wanted to reach out and and say I have been admiring your strength, and thinking of Hannah a lot lately. Sending a big hug and virtually holding your hand.
I am so sorry this is the way things turned out. Sometimes it takes a long while to recover from all the sedation med’s. Even when they are out of your system your body still is tired from all of them.
Praying for answers for you. I think a scope is a great idea, I just wonder why they havent done it before, like right after the first time.
I just got caught up on your little Hannah. I can’t believe how this hospital stay has gone for you guys, I am so sorry. I hate that she failed this last extubation so quickly. I wish you strength in what comes next. Hang in there!
I can’t stop thinking about you! I just wanted to let you know that when V was successfully extubated (as opposed to the times it did not work) they took her back to the operating room and did the broncospy thing and told us they would make the decision during the procedure and she would either come out with a trach or extubated. Perhaps that will work for you as well. I am just so hoping for a happy ending to this portion of your fight!
From what you report it seems that sedation is the most important factor. It will be a long way to wean her off. What about trach? How will she then be free of the narcotic withdrawall symptoms?
So sorry it didn’t work. We all had such hopes it would. Prayers.
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Carrie –
You contacted me when Hannah was first diagnosed. I have been keeping an eye on her (and you) from a distance ever since. I just wanted to reach out and let you know that I am praying for you both. Stay strong Carrie she is a fighter!!! hugs from NJ.
🙁 I’m so sorry to hear that. I wish there was something I can do. You guys are in my thoughts.
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