Tuesday, August 24, 2010



Today was a difficult day.



We went into this expecting our daughter to be comatose for the 7 days her breathing tube is in. Our ENT on the other hand had other ideas. There are two schools of thought on post-reconstruction and we are caught in the middle.


On one side (the side we were prepared for) the patient is totally sedated for the 7-10 post surgery so the airway/graft can heal and there is no risk of the breathing tube (in her nose) coming out.




The side we were not prepared for is the "awake" recovery where patients are fully awake (albeit, still on pain meds) with the tube hanging out their noses. The pro of this side is quicker recovery and no risk of post-surgical infections that occur when patients are sedentary (and due to Faith's chronic lung disease she is at high risk for this). Of course the BIG con is that if the breathing tube comes out- in the words of our nurse today, "it can be life threatening." The tube is not re-inserted like an ET tube and must be placed in the OR.


So while the PICU team is advocating for sedation, and our ENT is very much against it.



Faith is living in an in-between zone right now- she is awake and aware of her surroundings but extremely groggy and thrashing around. There is very little that calms her (except for very temporary boluses of sedatives) and our new job is to be constantly vigilant that her breathing tube stays in place.


Ah-yi-yi! And to think I brought enough reading material to last a week!



We just need to get through the next six days. The plan is to keep the tube in until sometime next week. Until then we are hunkered down in the PICU.




Thanks for checking in.


Jen


**************************************************************************

Update: This morning we have a clearer perspective and are more comfortable with the plan. Faith is still very groggy and agitated, lightening up the sedatives might actually help her come out of this funk. She is still on high doses of narcotics so we know she is not in pain (just annoyed that she is attached to so many different things). Today they took the drain out of her neck, and yesterday they removed the drain from her chest incision (where they removed the rib cartridge). We are moving in the right direction. :)




10 comments:

Alicia said...

I am sorry it has been rough going. I am saddened that your ENT would throw a curve ball like this at you, post-surgery. If this was his/her school of thought, he/she should have discussed this with you long ago, before surgery. Not good to be doing this afterward, leaving Faith hanging like that.

I am glad there is a more clear plan this morning. I just hope and pray that all can come together for the good of Faith and make clear decisions in her best interest.

Please let me know if there is something we can do for you. Love you guys.

Erin said...

Thanks for the update!! What a rough road!! I am praying for a peaceful recovery!!

Ann said...

Jen, it looks like Faith is off the vent already. Yes? That is great news. The keeping vigilent at the bedside for a week will be tough. You continue to be in my thoughts and prayers. Hope you get to sneak away for a Starbucks now and again.

Love,
Ann

Anonymous said...

We will continue to pray for you guys! We are believing with you that she will continue to move in the right direction. We love you guys so much, and we cant imagine how hard this is to watch your baby go through this. Please know we are walking with you every step of the way and if there is anything at all that we can do, please just let us know!

Anonymous said...

We will continue to pray for you guys! We are believing with you that she will continue to move in the right direction. We love you guys so much, and we cant imagine how hard this is to watch your baby go through this. Please know we are walking with you every step of the way and if there is anything at all that we can do, please just let us know!

Love you!

Katie John and Lj

Anonymous said...

What a challenge. I'm praying for all of you. I hope Faith had a much more relaxing day. Sweet angel! I hope she has GOOOOOOOD drugs so she feels no pain and is totally peaceful.
Lord, Thank You for washing Faith with your POWERFUL healing. Strengthen her through this trying time of recovery. Thank You for this magnificent miracle of giving Faith her voice.
Mary Trujillo

Jen said...

So sorry things haven't turned out exactly how you had hoped. I'm happy to hear that there is a new plan of action as of this morning. I hope and pray all continues to go well for Faith.

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