Help with Harper Jean's hospital stay

Hi my name is Kristy Chorostecki and I am sweet little Harper Jean's aunt, which also makes me Becky’s older sister and Barry’s much wiser sister-in-law ; ) . I am asking for everyone who knows and loves the Drew family (which is everyone who knows them!) to rally around them now and help to lift them up in their time of need. Harper is currently hospitalized at Lurie Children’s Hospital in Chicago and will continue to be for what is looking like at least next week- likely longer- due to a complications from a gastrostomy (G-tube) wound. Becky and Barry will be spending nearly all of their time with sweet Harper and could really use some support for food, parking, and any other unforeseen expenses that may arise over the next few weeks as Harper heals. Right now, Austin and Abbi will be spending their time with Grandma during the week and with either my family or Auntie Jenny on the weekends until Harper is ready to come home. Becky and Barry are always the first to jump in and offer support and hospitality to everyone, let’s all rally together to offer them the same now.

 

Thank you! -Kristy

 

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Harper’s Story:

 

Harper Jean came into this world nearly 6 weeks early as most of us were settling into a life of home schooling, endless baking, and becoming intimately familiar with Zoom. After an 11 day stay in the NICU, Harper was able to join her big brother, Austin, and big sister, Abbi, at home and the Drews started to settle into life as a family of 5.

 

Harper’s first visit to Lurie Children’s Hospital was when she was just 3 months old for a minor hemangioma. Since then, she has received several diagnoses including hypotonia, global developmental delay, encephalopathy, failure to thrive, tongue-tie, chronic vomiting, and feeding difficulties, just to name a few. Harper has undergone a substantial number of tests and treatments, some of which have been successful and some which have led to more questions.

 

 

The Drew family has had a particularly tough time with Harper’s treatments since August when she underwent a routine scope and biopsy that led to complications and a several days hospital stay. It was at this time that it was decided that tube feeding was the best option for Harper and the nasojejunal (NJ) saga began. If you have ever had a child who crawls, especially one who army crawls- or one who has hands- you will understand how incredibly difficult it is to keep a tube through said child’s nose and into their digestive tract. Hint, it is impossible. Becky and Barry were spending what felt like every other day driving back down to Children’s to have the NJ replaced because it was pulled out again. Harper is so crafty that she even figured out how to pull it out with the bridle (a clip that attaches it to her nasal bone) a few times!

 

 

After two months with the NJ, Harper was finally able to trial a nasogastric (NG) tube! This was wonderful news as it meant fewer trips to Children’s as the NG could be replaced at home by Becky or Barry (or her nursing student aunt) when it became dislodged. While it certainly was easier logistically, replacing an NG several times a week on your own screaming toddler has its own set of issues- it was so emotionally taxing on both Becky and Barry to hold poor Harper down and put her through this repeatedly. Near the end of the year, and after further testing revealed no more answers about what could be causing her issues, it was decided to switch her to a gastrostomy tube (G-tube). Because the first month or so can require more frequent visits to Children’s if the tube becomes dislodged, Becky and Barry opted to wait until after Christmas for the surgery and the G-tube was placed on December 30th.

 

 

The surgery went very well, and Harper did great for the first few days! Her first feedings in the hospital went according to plan and she was able to stop her pain medication within the first few days post-op. Unfortunately, things took a turn for the worse quickly. On Wednesday, January 5, the stoma surrounding Harper’s G-tube started leaking some fluid and Becky made an appointment to see the doctor for Thursday morning. The wound care team felt this was normal drainage and sent them home with instructions to contact them again if it worsened or if the drainage was bloody or if it was filled with formula. By that evening, the drainage was bloody and they were in the ED at Children’s. Once again, they were sent home, this time with a different binder for Harper’s abdomen.

 

Yet again, everything changed on Friday morning, January 7th, when Harper woke with formula spewing from the stoma and a visible gap between the G-tube and stoma. The wound care team made an appointment to see Harper in the afternoon and this time admitted Harper to Lurie Children’s Hospital. As of now the plan is that she will stay in the hospital until the wound is completely healed, which could (and likely will) take upwards of a week. And while all of this is happening, the underlying cause of Harper’s issues is still unknown.

 

 

01/09- Harper started IV peripheral nutrition to help aid in the healing process of the wound and she will have an NJ placed tomorrow to aid in further nutritional needs until the G-tube is usable.

 

While dealing with a medically fragile child is always difficult, the added stressors of having two older children at home and the current COVID wave are placing additional stress on Becky and Barry’s situation. Both Becky and Barry are staying with Harper at the hospital as much as possible and parking, as well as eating at Children’s add up quickly. Becky and Barry are two of the kindest and most giving people I have the pleasure of calling my sister and brother-in-law. I want nothing more than for them to not need to worry about the cost of their food, parking, and other unforeseen expenses during this and future hospital stays. I know they would do the same for every one of us.

 

Thank you,

 

Kristy