Headband from my heart mama friend Heather. It's from Love What's Missing |
So yes Evanna will be having another surgery tomorrow. However, it's just a simple re-plication of her diaphragm, and compared to her other surgeries - this one is practically nothing in my books!
We've been really reluctant to publicly talk about what's been going on around here over the past 4-5 days in fear of jinxing ourselves, but the fact of the matter is that things have dramatically improved and Evanna has been doing very well. The prayers and fasting are working, and I'm amazed at the leaps and bounds that Evanna has made since last Wednesday. They finally found that her femoral line and ET tube were infected, so they started her on the appropriate antibiotics. Since then her heart rate and temperature have been much easier to maintain, which means we've been able to make lots of headway in regards to her ventilator support being decreased. Evanna is now on a PEEP of 6 (!!!) and has been at that level for a few days now. To try and put that in perspective of how big of a deal that is - since Evanna's original open heart surgery, we have never been able to get past a PEEP level of 8, and every time we do, we eventually end up going back to level of 10, and sometimes even 12 or 14. In all 4 of Evanna's past extubations, they extubated to noninvasive support on a PEEP of 8, and then she eventually fails.
So why the big change and progress? Well first, I am not underestimating the power of fasting and prayers. I know we've been doing these things from the start, but Heavenly Father does things in his own time, even when it doesn't make sense at the time. Secondly, I guess Evanna just needed more time to heal since her last surgery when Dr. Rebeyka resectioned her subclavian off of the back of her trachea (interesting fact: so I guess I really didn't pay attention to what resectioning her subclavian meant - but basically blood pressure can never be taken from Evanna's left arm now, because there is no major artery supplying blood to her left arm). Thirdly, it didn't help that Evanna was getting infection after infection, making things worse and her body having work harder - including her lungs and airway.
Anyways, though we're down to a PEEP of 6, they have noticed that her right diaphragm is still acting up. They did a fluoroscopy this morning and it showed that her right diaphragm was indeed paradoxical and needs to be replicated (basically her right diaphragm moves in the opposite direction and works against Evanna). I know it sucks that they're "redoing" a surgery, but I guess plications don't always last, and if you remember from her last plication, it's a fairly straight forward and easy procedure (they transferred Evanna within 24hrs after her last plication).
After they re-plicate her diaphragm, they'll give her a day or two to rest, and they hopefully extubate later this week. In saying that - it's a BIG week for Evanna! I've never been more hopeful that we may finally be heading in the right direction of taking Evanna home and putting this behind us.
xo The Irvine Family
PS. 6 !!!!!
Late Edit: I realized that I forgot to talk in detail about her bronchoscopy and CT/Angio from last week. So first she had a bedside bronchoscopy, and Dr. El-Hakim just did a simple bedside exam. After he examined Evanna he stated that while there is still some malacia in her trachea, he was actually quite pleased with how much better it looked. She isn't out of the woods, and still has a ways to go, but it was music to my ears. After that, they took her down for a CT/Angio to check for compression around the trachea. The scans came back, and everything actually looked good. They didn't see anything compressing directly on her trachea, and they were happy with everything they saw. This meant that an aortapexy was off the table, as there was no reason to go back in through her chest. This was a relief to hear from one standpoint, because this is a risky surgery, but that also meant that if she failed one more extubation, Evanna would need a tracheotomy. The CT also clearly showed her high diaphragm on the right, and that's why we have since investigated into the problem.
It was after the bronchoscopy and CT/Angio that Dr. Aditia turned her PEEP back down to 7, and since antibiotics had been started, her body handled the decrease beautifully!
Late Edit: I realized that I forgot to talk in detail about her bronchoscopy and CT/Angio from last week. So first she had a bedside bronchoscopy, and Dr. El-Hakim just did a simple bedside exam. After he examined Evanna he stated that while there is still some malacia in her trachea, he was actually quite pleased with how much better it looked. She isn't out of the woods, and still has a ways to go, but it was music to my ears. After that, they took her down for a CT/Angio to check for compression around the trachea. The scans came back, and everything actually looked good. They didn't see anything compressing directly on her trachea, and they were happy with everything they saw. This meant that an aortapexy was off the table, as there was no reason to go back in through her chest. This was a relief to hear from one standpoint, because this is a risky surgery, but that also meant that if she failed one more extubation, Evanna would need a tracheotomy. The CT also clearly showed her high diaphragm on the right, and that's why we have since investigated into the problem.
It was after the bronchoscopy and CT/Angio that Dr. Aditia turned her PEEP back down to 7, and since antibiotics had been started, her body handled the decrease beautifully!
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