Who ever would've thought we'd be celebrating her 9th birthday? Not the million specialists we see...honestly, not even me. We've been through so much in the past nine years it's crazy to even think about. We've surpassed every hurdle the powers that be have thrown at us and come out smiling. Until recently..
We were told repeatedly before she was born that we will have to make some quick life/death decisions... it never happened... we were told when we first got custody at 11 months old "if she's still alive in 3 months call and schedule another appointment"... she has somehow always come through without us having to make any snap decisions... until September 19th... I will never forget when they gave her bedtime meds on the 18th, the day of her surgery, watching the pulse ox go down and down and down and sitting steadily around 85... alarming like crazy... I kept buzzing the nurse... she called respiratory therapy.. he sat with us for endless hours. Doing treatments, stimulating her to breathe more, suctioning her because she couldn't cough.. listening to her lungs... he'd leave to care for another patient and come back.. for hours on end. I held her hand, mindlessly talked and constantly questioned what was going on... in my heart I knew what was going on. By about 5:30 am I was texting my husband. She had thrown up blood and they were taking her for a chest x-ray. We couldn't keep her oxygen levels in a safe range and she wouldn't keep an oxygen mask on.
By 9:30 am our NP from our Complex Care team showed up and usually it's a relatively quick visit but she stayed.. constantly checking Madilyn, talking to the respiratory therapist, going to find doctors and trying to keep me calm. She had me checking how close my husband was to the hospital. When I told her he was parking the car she backed me up against the wall and told me that in 30 seconds there was going to be a mass amount of people in the room.... reality set in.. Madilyn was dying... she couldn't breathe. Her oxygen levels were down to 70 and nothing was working to bring them up. Daddy and Goose arrived to swarms of people in blue jumpsuits, stretchers, portable lab and x-ray machines and a little girl desperately trying to breathe.... I'll never forget the moment that the Rapid Response Critical Care team member turned around and said "she's advanced directives... how far are you willing to go? You have 2 seconds..... she's blue"........ it was moments of autopilot... no intubation, no CPR, no cardiac meds.. sedation with CPAP was the final decision.... and suddenly someone said PEP... that PEP treatment saved her life.... those repeated PEP treatments multiple times per day for the next 48 hours and high flow oxygen at 15 for hours upon hours... slowly weaning down for her to be able to maintain for a few hours on her own. I didn't find out until later that those treatments can potentially explode their lungs...
Honestly the 48 hours in the PICU is mostly a blur for me. It was traumatic... our nurses were amazing and our night nurse, Art, was perfect for us... especially when Scott was gone home and her levels dropped and respiratory therapy was back for what felt like the millionth time and machines were beeping like crazy and I completely lost it.... like nervous breakdown kind of lost it... I was a sobbing puddle on the floor telling him that I didn't know if I could do this... he promised me I wouldn't do it alone... he would make sure of that...they upped her sleep meds so she would stop fighting everything and slowly she was able to maintain for longer and longer... Our day nurse Amy was equally great.. fighting with the doctors the first time they wanted to transfer her back to the other floor... she stood in the hallway very professional yet adamant when she told them "she's not ready, you'll lose her in between floors when she crashes".... not 15 minutes later it happened again.... I'm so thankful she fought for us....
I never want to relive that... but our reality says I will have to... I don't know how, so I've chosen to see a trauma therapist. It was highly recommended by our medical team. We are also going to see our Pulmonary doctor and find out how much more damage was done to her left lung. They think it collapsed because she was under anesthesia way longer than she ever had been.. they think maybe she aspirated... I've always talked about how thick Madilyn's secretions/vomit are but she completely dumbfounded the respiratory therapy staff and the PICU staff... they were trying to suction her and all it would do it clog the suction machine. They had to get it started and use the probe to make her vomit instead... it was terrifying...
It makes me question how tired her little body is getting... it makes my heart hurt....
It's got me going on autopilot 99% of the time because otherwise the flashbacks of things I blocked out keep coming back and it makes it difficult to function. It has me over analyzing everything she does.
I am returning to work today... I don't know if I'm ready... one foot in front of the other and breathe is all I keep telling myself.....
I'll just keep praying to a God I'm not sure I believe in and keep wearing the pink fucking shoes...
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