Parker’s Story

Site created on June 13, 2023

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Journal entry by Eric Yanke

On Monday, November 13th, Parker was admitted to the ICC (Infant Care Center) at Children's Hospital in Minneapolis.  It was a planned visit because Parker's growth had stalled and he was having a very hard time gaining weight.  Feeding had become a high stress endeavor for Parker (and parents) and he was simply failing to thrive.  After meeting with a pediatric GI doctor we planned to do an inpatient stay at Children's to determine why Parker was struggling to grow (we were fairly sure it was an intake issue but we needed verification).

It became clear pretty quickly that our stay would be more than the 48 hours originally suggested by the GI doctor.  Parker was fit with a ng tube (feeding tube through his nose) so that he could receive consistent volume of food.  He naturally hated the tube and struggled to bottle feed so most of his nutrition was delivered through the ng tube.

We also learned about the results of a 24 hour EEG that Parker (and Mom) had completed the week before.  His neurologist called to inform us that Parker is in fact having minor seizures.  Thankfully his seizures aren't immediately dangerous but Parker started medicine to reduce their frequency.  He also started a second medication that we are hoping helps his neuro-irritability.  Parker frequently has a hard time regulating and as one doctor put it "feeling comfortable in his own body."  Angie and I both think that Parker has been generally more comfortable and smiley since starting this medication last Tuesday.  

On Wednesday Parker completed a swallow study.  He drank Barium Sulfate solution while x-ray imaging recorded his swallows.  During this test we confirmed that Parker aspirates when drinking normal thickness liquids.  This confirmed what we suspected though most of his aspirations were "silent" which made them hard to diagnose.  Thankfully he was able to drink thickened liquid from his bottle so we still can work on bottle feeding him.  For the time being, Parker is unable to have any normal liquid and we need to thicken his formula that he eats orally.

With thickened liquids, there was no way that Parker was going to meet his calorie needs from bottle feeding.  At the recommendation of his GI doctor, the hospitalist, Speech Therapist, and neurologist, we decided that Parker would have a G-Tube surgically inserted into his stomach.  This plan allows for Parker to get his required nutrition in a reliable way.  Opting for this surgery was a very hard but, in the end, clear decision for Angie and me.  We worked so hard over the past 3 months trying to help Parker thrive and grow that this felt, in some ways, like a failure.  

Handing Parker over to the surgeon was heart wrenching though we were called by the surgeon in under 30 minutes with news that it went extremely well.  After another 45 minutes in the recovery room, Parker returned to his room where we were waiting.  The first 24 hours after surgery Parker was tired and in a fair bit of discomfort.  He was on a steady dose of Tylenol and even needed a couple of doses of morphine to manage the pain.  

Over the past couple of days we have been making sure that Parker's surgical site is healing properly, learning his new medication schedule, going through training on his new medical devices, taking an infant reflux-CPR class, and finally, getting home.  

For the sake of brevity(haha) I tried to include the most relevant, insightful details.  There is more, and we are happy to chat about our week if you'd like to ask.  The staff at Children's was incredible.  It was a hard week but it definitely felt like we were in the right place, with the right people, to get Parker on his best path forward.
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