To Trach or Not to Trach... That is the Question.

Hi everyone,

Where to start...

The last few days have been stable but hard. Since being extubated and reintubated Ella has been pretty stable. There have been a few hiccups with differing numbers and having to go up and down on medications but overall she's doing well.

That being said, Matt and I have a major decision to make regarding the tracheotomy. We have an appt for a tracheotomy surgery on Wednesday. But we have a lot to think about... do we have a trach put in or wait and see if she can build up enough strength to be extubated? Both have pros and cons, which is why it's been so hard for us to decide. Being intubated for so long has made Ella's lungs weaker since they've been able to depend on the ventilator. Some doctors think we should not even try to extubate a third time, but others think we should give it a try. Now here's where it gets complicated... if we decide not to extubate and to give her a trach, she wouldn't need the sedation that she's needed while on the ventilator, she would be able to be held and start growing like a normal baby, we would get out of the hospital sooner but would need a home nurse for a while that would be there 16 or so hours a day, and she wouldn't necessarily need it permanently (probably for about 2-3 years). If we decide to try to extubate again and fail, we will have to wait two weeks to get her the trach because the surgeon that does the infant trachs is going on vacation. Ideally we would extubate and she would do well, but we aren't even sure if that will happen... So lots of praying has been going on here!

Dr. Hill, one of the cardiologists, wants to do a heart cath tomorrow morning to see if there's something we are missing. He will be scoping through an artery in her leg up into her heart and lungs. He will be checking the pressures and making sure things look right. He talked to us about possibly going up into the jugular arteries where the clots are and trying to move them out, but he said that the risk of them going to the brain outweighs the possible benefits. We really need these clots to go away though because they will make it impossible for the next surgery to happen... Dr. Hill isn't sure if these clots are what's inhibiting Ella from being able to get extubated. It's really interesting because the clots formed and caused the brain bleed (we believe) but the clots won't go away because they aren't able to give her the heavier meds due to the brain bleed. It's a vicious cycle! And of course the doctors have told us that it's very unusual for clots to form there... poor little Ella, nothing seems to be easy for her.

We had a chaplain come in and talk to us today. He was really kind and read us a psalm and prayed over us. He lost his daughter to cancer when she was 5, so he knows the sorrow that comes in a hospital far more than we do.

Please pray for wisdom with what we should do with the trach decision. We have until tomorrow night to decide.
Pray for Ella to stay calm and comfortable because the last couple of days she has seemed really bothered by something and "crying" (without sound of course) a lot (maybe that'll help strengthen her lungs? Who knows...)
Pray the blood clots will go away.

We know God is the ultimate healer and can do miracles that surpass our expectations and we pray that He will do that with our little "Ella girl". As always, we continue to pray for His will and for us to accept whatever that may be.

Love,
Jillian