Year in Review

I have put off writing about the last year of our lives because, I don’t think the words to accurately describe all we have been through exist. We started the journey hoping and praying that Avelyn would have one open heart surgery and a few heart cath’s.  That dream (or delusion) shattered when Avelyn’s surgeon discovered much more complicated anatomy than he was expecting.

Since that point we’ve been on a roller coaster from hell and have seen our child suffer unimaginably. For those that may not have followed her story closely, here’s a recap of what our Avelyn has endured:

• Central shunt and right pulmonary artery banding open heart surgery at 5 days old with a chancy post op stabilization complete with unstable blood pressures and high lactate levels.
• 2 episodes of lactic acidosis with levels in the mid-teens, one requiring re-intubation.
• Over circulation causing poor perfusion and feeding interolerance.
• Basal ganglia ischemic stroke.
• Diagnostic heart cath.
• Endocarditis and nearly fatal septic shock, requiring intubation and terrible saturation instability (desat’d into the 40’s with the slightest provocation for about a week.)
• Early unifocalization, right PAplasty, VSD revision, and tricuspid valve rebuilding. Avelyn’s surgery lasted nearly 20 hours and she coded on the table requiring CPR. She only survived due to a portable bypass machine call ECMO.  Avelyn sustained her kidney injury due to this surgery and all its complications.
• 4 days on ECMO, where she experienced 2 subdural bleeds, uncontrollable bleeding into her chest that required continuous blood infusions for the first day and also NEC. She also required an in room open “exploration” of her open chest to find and stop the source of bleeding.
• Chylous Effusions
• ECMO disconnection.
• Delayed chest closure.
• Another diagnostic heart cath that discovered surgically induced coarctation of the aorta, and tricuspid regurgitation requiring intervention-this cath also caused a peri-renal bleed further damaging her right kidney.
• Another open heart surgery to make her VSD smaller into a fenestration, correct her coarc (via thoracotomy), revise her tricuspid valve, and more PA work.
• Respiratory infection from resistant Enterobacter.
• Building fluid overload.
• Started dialysis via PD drain in her belly.
• Continued chylous effusions
• Bronchoscopy showing right lung compression due to a large hematoma.
• Hematoma evacuation via full sternal incision.
• Tenchoff placement for more permanent means of peritoneal dialysis.
• Leaking tenchoff catheter, preventing usage and causing near fatal fluid overload situation.
• Extreme pain and delirium due to long term usage of high dose opiates, benzos, and other narcotics.
• Diastolic dysfunction, maxed out ventilator settings-causing pneumothorax and other lung damage.
• Massive diuresis over the course of a week that completely changed her clinical picture.
• After 3 months, chylous effusions resolved and chest tube was pulled.
• Successful extubation on the first attempt after 4 months of being intubated.
• Completely weaned from HIGH doses of Ativan.
• Culture negative sepsis and near septic shock.
• A week of anaphylactic symptoms related to fish oil.
• NEC and translocation of bacteria causing sepsis/bacteremia.
• Weaned from precedex.
• Extreme hypertriglyceridemia (maxed out past 2700)
• NEC and translocation causing sepsis/bacteremia again- septic shock with tanked blood pressure and lactate level of 18.
• Rhino virus nearly causing respiratory arrest.
• Hyperkalemia of 8.9
• Severe dehydration causing medical emergency.
• Feeding intolerance issues.
• Norovirus causing terrible diarrhea and leading to UTI which translocated into the bloodstream causing sepsis. Again.
• Fluid overload and airway compromise requiring intubation.
• Bronch study with finds of trachio/bronchiomalacia
• Successful extubation

Currently she is working on feeds, narcotic weans, staying away from bacterial and viral infections, settling out on a stable dialysis regimen, GROWING and PLAYING.

After writing all of this out (from memory, so I likely missed quite a bit and definitely understated most all…) I am truly beside myself with of all my poor child has endured. At this point, I haven't processed what all has happened and can't while still in survival mode. Right now we focus on doing our best each day to be there for Avelyn fully and advocate for her as she needs us to. That takes all we have and encompasses our lives and minds.

I’ll try to post another year in review, from the emotional side of things soon.

Love to you all and a very, very, very Happy Holidays and Merry Christmas!

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