Wait until you get to the exciting part of his day…around 6:45PM. Sorry in advance for the long post, Ethan lives an active life some days.
Thursday, June 18
7AM – Lindsey, our night nurse, reports Ethan had a great night of sleep.
8AM - Caleb, our day nurse, arrives to take Ethan to his Summer School Program.
8:45AM - Ethan and Caleb head off on the bus.
12:15PM - Ethan and Caleb arrive home. Caleb reports that Ethan enjoyed a lazy day and slept through most of the morning.
5PM - Power at home goes out due to thunderstorms and heavy rain
5:45PM - Scott gets home and Ethan is still enjoying a lazy day. Maybe the change in weather, or all the rain, has made Ethan tired?
6PM - Scott sends a text to Lindsey, our night nurse, to expect lots of traffic and to warn that key intersections around us do not have working traffic lights due to the lack of power.
6:15PM - Scott gives Ethan his evening Prevacid and fills his feed bag with formula.
6:30PM - Scott and Alexia are looking forward to Thirsty Thursday at our local wine store – A Bottle or Two. Lindsey is scheduled to arrive at 7PM.
6:45PM - Feed pump alarms – No Flow. Not a good alarm to get when the feed bag was just filled. Scott (the Chemical Engineer) tries to advance water through the feeding tube – no luck. This is not a good sign, as it indicates a possible clog in the line.
6:50PM - Alexia calls his Medical Team (Complex Care). Ethan needs to go to the Emergency Department (ED) to get his tube replaced. If the tube cannot be replaced tonight then he will need an IV for maintenance fluids and will be admitted to Cincinnati Children's Hospital (CCHMC) until the tube can be replaced.
7:05PM - Lindsey arrives and we share the exciting news with her.
7:15PM - Alexia comes up with a PLAN. Scott and Lindsey (she can accompany to the hospital up until he is admitted — at least it’s not a complete waste of a work night!) will take Ethan to the ED while Alexia and Zak join friends for dinner.
8:30PM - Arrive at CCHMC. Nice remodel of the ED waiting area.
8:45PM - Ethan gets a room in the ED.
9:30PM - Ethan heads to Radiology for X-rays to confirm his feeding tube placement. Tried to place a wire in his feeding tube to facilitate the replacement tonight. UNSUCCESSFUL.
10:30PM - Return to ED to understand next steps.
11PM - IV placed and maintenance fluids started. Not a good sign. Doctors talk about admitting him until the procedure can be done in the OR under anesthesia.
11:15PM - Ethan falls asleep.
Friday, June 19
12:30AM – A room has been identified but it needs to be cleaned. Scott offers to go clean the room if it helps move the process along.
1:15AM - Room ready – yeah. Lindsey heads for home.
1:30AM - Ethan arrives at his room. Still asleep. It is very clean. NO bed.
1:40AM - Bed arrives.
1:45AM - Overnight Doctors go over meds.
2AM - Scott settles into the uncomfortable parent couch/bed to get some sleep.
5:15AM - The IV pump alarms. Low Battery. The nurse did not plug the pump into the electrical outlet when we arrived at 1:30AM. Bummer. Ethan slept through it – Scott did not!
9:15AM - Rounds. Working on a PLAN for today.
10:30AM - Ethan is an Add-On for the procedure to place a new GJ Tube in the OR under general anesthesia. This is hospital code for “You will wait a long time before having your procedure.” Our concerns are rising as Ethan's GI system is slow to respond post anesthesia – but at this point there are no better options to replace his tube.
11:15AM - Bath Time. Might as well make good use of Ethan's day.
12:30PM - Lunch for Scott. Ethan is still sleeping – strange. Why?
2:40PM - Ethan gets the green light to head down to the OR.
3:30PM - Ethan is wheeled into the OR for his GJ Tube replacement.
4:15PM – Scott talks with the Doctor who replaced Ethan's GJ Tube. Now the fun begins. Ethan has to prove he can maintain his target feed rate of 120 ml/hr. Given the late afternoon procedure, Ethan will spend at least one more night in the hospital. Hoping he will be home for Father's Day.
Shabbat Shalom to all and Happy Father's Day to all the Dads out there.
Alexia and Scott