I'm not sure if I'll sleep tonight, got a lot of stuff rolling through my head so figured its been so long since I've written anything here I could do this. Everly has been doing great, doctors right now are not planning on doing any surgeries on her again this year so long as nothing changes....but that could change still. In the next 4 weeks, Everly has 3 appointments, one with neuro, one with pulmonology to see what they thing about her airways, and the 3rd is with cardiology with her cath doctor, Curzon. [...]
Everly - Journal
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It’s been so long since our last update, I feel like I should post something…. Everly is doing well in general. She’s making her docs a little nervous in the sense that her lungs are taking a while to bounce back from from her RSV infection she had at the end of January. She is still coughing off and on and you can almost always hear her breathing from a few feet away. She seems to be feeling well though- always smiling and taking everything in stride. She’s been so busy lately- she’s hard to keep up with. She’s beginning to pull up on things and working on standing a little more on her own- her legs are so weak and she’s pretty wobbly. I think I have a heart attack every time I see her pulling herself up now! Yesterday morning I walked into her room and she was standing in the crib fake crying for me to come get her- so damn cute! Needless to say, her crib is now at its lowest setting and I’m wondering how long it’ll be until she’s ready to move into a toddler bed- she’s growing up so fast…[...]
Well, as everyone knows we finally made it home. The last surgery was pretty awful, but it was always in the back of my mind- how many times can you cut someone open before they get an infection. I suppose it was inevitable, but Everly fought through it all and got past it. She finally lost her last med she was weaning off of to get through the withdrawal the beginning of this month, and she's been doing great all things considered. She still doesn't have all her strength back, before the surgery she was able to sit up mostly on her own, and she would stand under her own power if I held her hands. We're still working on getting that strength back.[...]
Today is a week, I think, since they pulled the vent and she started withdrawing from morphine. Its been difficult just watching Everly go through it, I cant imagine what she is actually going through. She's still on her withdrawal meds as well as some other sedation (though not narcotic) meds to try to keep her out for some of it. When she is awake, if she's not miserable, she's mostly a zombie baby, looking right through us. Some days though she would be awake, and actually lock eyes with us, so I'm happy that she at least knows we're here with her. I've gotta say, its extremely aggravating watching her go through everything, then throw withdrawal on top of it, and once again Erin and I are relegated to hand holding and being a cheer leader on the sidelines...I just feel like I should be able to do something to help her, its what I'm supposed to be able to do as her father, right? Its at times an infuriating feeling of complete inadequacy, something I doubt I'll ever get over, even with her future surgeries.[...]
Today went ok, it looks like this time around she'll tolerate not having help from the vent. We know last time that the infections are what was holding her back, and the bacterial infection is gone, but the viral one she has we've been told to expect weeks for her to get that completely out of her system. I've stayed up all night with her, she's still pretty lucid when she is awake, but she is opening her eyes completely, and occasionally locks in on Erin or I, but for the most part the drugs are still holding her down a little. They dont want her completely sedated, so Everly's body will put in a little more effort, but shes out of it just enough that usually when her eyes are open she's staring right through you. I just want to be able to at least hold her hand and talk to her, so she knows someone is here with her. Plus it will be good for me to get my body on a night schedule, she'll really need someone in a few days when they really pull the reins on her sedation, and she'll be in pain and likely still fighting off morphine withdrawel. [...]
Not much has changed with Everly in the last week or so. She is still requiring several IV drips, she's sedated and on the ventilator. Any attempts to wean have been unsuccessful so far. Today they will gently push her and try to slowly decrease her vent settings. Her x-rays yesterday and today look slightly better but mostly unchanged. She continues to have atelectasis in both of her upper lobes- anxiously waiting for them to reopen.[...]
I'm going to force myself to take a break from staring at Ev's monitor for a bit to update you all from a medical perspective on how Evy's is doing. She is not doing well the last couple days and is really giving the medical staff a run for their money it seems.[...]
Well, Everly made it out of surgery, but when Hammel came and spoke with us post op he was very...guarded. He'd never been like that before and it definitely made me nervous, but ultimately what Erin and I want from him is for him to be straightforward. He was very concerned about her awful pulmonary arteries, and said he did extensively more patching on them than he had anticipated. Cutting her open takes close to an hour, he has to be cautious going in with the knife because scar tissue could have pushed organs up against her rib cage, and theres no way of knowing exactly where they are, so thats a time consuming process. Once he was in, the Glenn actually only takes about 10 minutes, he cuts the SVC, sutures it to her pulmonary tree (which leads directly into the lungs) and then patches the hole he left. She was in surgery for about 5-6 hours, and the great majority of that time was spent patching her pulmonary arteries. Erin said she thinks Hammel honestly thought she had a 50/50 shot after this one, and wasn't sure which direction she would go. [...]
Welcome to the Everly support family! This site is for family and friends, old and new, to organize our efforts to support this extraordinary person. This page will serve as your home base for rallying the troops, receiving updates to support Everly. Here's the plan:
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