Strength through Adversity

The last month has been one of Avelyn’s most difficult. In that time she nearly coded and very narrowly escaped septic shock due to bacteremia (suspected central line associated staff epi infection). During this acute period she suffered a lactate level peak of 18.7 and required 8 ml’s per kilo of bicarb, a blood transfusion and a ton of fluid- in addition to the antibiotics.

The next weekend she sustained a potassium level of 8.9 (which is insane) and started have dysrhythmias and bradycardia before the interventions to bring down the potassium in her blood took effect. The insanely high level was not the first time she had been hyperkalemic and Sean and I have raised concerns before due to poor maintenance of her potassium levels. Trouble arises due to her need for dialysis, as well as recent inconsistency in her feeds and fluid status related to acute illnesses. Since that time, I have nearly lost my temper due to the time it takes to receive her potassium results from the lab. The ICU instensivists have listened to my concerns and agreed, and hopefully begun processes to better care for all dialysis dependent patients in the future.

The next week’s challenge was rhino virus and another bacteremia scare. Avelyn’s first symptoms of rhino were coughing, running/stuffy nose but over the course of a few days things escalated to a dangerous level. The event that got her rapided back down to the ICU was her upper airway spasming closed. The next day this continued to happen, despite being on a ton of steroids. The medication to keep her upper airway open (inhaled racemic-epi) caused her lower airway to spasm closed. This essentially sent her into respiratory arrest. During the crisis we had a nurse that understood that if Sean and I are urgently insisting that Avelyn needed to see the attending than that means she really needed the attending. By the time the attending rushed in, Avie had already gone from purple to blue and was quickly graying. He bagged/CPAP’d her for half an hour- forcing her airway open with the positive pressure and albuterol. She was then placed on high flow respiratory support for a few days and her feeds were held once again (for fear of poor perfusion to her gut). Avie’s respiratory status took the better part of a week to improve, even with round the clock albuterol treatments. It’s no exaggeration when I say we nearly lost her to the common cold.

This last week’s challenge was an extension of rhino’s complications. Because she required such a high dose of steroids and for so long, her triglyceride levels soared to dangerous levels, placing her at high risk for pancreatitis. With such crazy high triglyceride levels causing hemolysis of her lab work, which rendered the results unusable,  and again placed her at high risk for electrolyte imbalances-which can be fatal considering her recent potassium issues. So…. Despite our reservations about feeding changes, given her recent history of NEC and intolerance, the risks that her high triglyceride levels were placing her at necessitated an immediate feeding change. Also complicating matters, Avelyn’s weight had been trending down (fluid losses from diarrhea related to antibiotics) and her heart rate had been trending up over the course of a couple days. I continuously brought up my concerns to staff and providers that she was growing too dry, but there seemed to be a lot of reluctance to give her IV fluid boluses. She finally was given a small fluid bolus that helped a tiny bit at the time. So in the late afternoon she was started on monogen, a feed that she was on over the spring while she battled chylothorax. The feeds were ramped up to full volume within two hours, and at the time I knew she was super dry and my biggest concern was getting fluid into her. Little did I know, her body was not tolerating the drastic change and within hours she started having absolutely terrible diarrhea. In that night she had more fluid lost in diarrhea than she got in feeds. I still feel terrible about it all. (On another note, I was able to talk the resident into leaving her IV fluids running for an extra four hours and I think that extra 80ml’s of IV fluid helped keep her from crashing in the long run.) I fell asleep around 1230 and woke at 0300 to see her heart rate in the 170’s (normal is 110-120’s) despite her being completely calm. I immediately got up and took her blood pressure, which was low and went to find help. Her nurse was busy at that given moment but came a few minutes later. Her nurse that night was great and listened to my concerns and immediately went to find the resident.  After telling the resident multiple times she needed to come off of dialysis (which was steadily pulling more and more fluid off), I just went and turned it off myself (I am sure the hospital staff loves parents like me……).  Long story short, Avelyn was rushed downstairs to the ICU and given a ton of fluid. Like half a kilo at least and she stabilized. In my panic of the situation, it helped that the attending on call was Avelyn’s primary intensivist and the fellow was the doc that once dug through the trash for her bloody diaper during a NEC incident.  So needless to say, both docs knew Avie well and I knew she was in particularly great hands.

The next day Sean and I met with Avelyn’s entire interdisciplinary team for a care conference. We discussed Avelyn’s care and goals, short term and long term. We were able to contribute input to the conversation and her feeding plan and we feel hopeful that, as long as no further complications arise, Avelyn can begin to find the road of recovery on this plan.

Aside from the new feeding plan, we discussed Avelyn’s long term goals and treatment. Which includes future needed surgeries and cath’s to get her hear t into the best shape for her eventual kidney transplant. A few months ago, I had requested that her records be sent out to Stanford which is home to the world’s best MAPCA’s surgeon. We have received word that he has agreed to take on Avelyn’s case and wants to see at Stanford for a diagnostic heart cath and likely open heart surgery in 6 months. Sean and I are grateful that the world’s best, is willing to work on Avelyn and believe he can help. But there are sooooo many reservations. First of all, Avelyn would not withstand a bypass run right now. She is just too too sick. In order for her to successfully come off bypass she would have to be fully optimized for this surgery. Meaning the next six months would have to include miraculous recovery and sustained stable nutrition. We don’t know if we can get Avelyn to that point.

There’s also the logistics and financial concerns of flying a child dependent on dialysis across the country for open heart surgery at a completely new facility and back. It’s all so truly and completely overwhelming to think about. We are waiting to hear back from the surgeon about a teleconference so we can ask our specific questions and express our concerns about everything. Hopefully we’ll know more then. Until then, we are concentrating on getting Avelyn as well as possible as soon as possible- so this incredible opportunity will continue to be on the table.

Once again, please continue to keep our beloved baby in your thoughts and prayers. Her perseverance and determination to stay with us inspires us on a daily basis. We know that if she can make it through all she’s been through, surely we can handle the logistical and financial concerns to ensure her the best possible opportunity at life.

As always, sending peace and love to each of you!


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As usual, we chose not to share photos or our sweet girl during the worst of times. Some things are just too hard, but I hope you all enjoy these. Our wonder girl grows cuter by the day! 😍