Croup cough strikes Naaman

Today became another sober reminder at just how touch and go things can be and how things can change very quickly. Yesterday we were celebrating Naaman having completed the first 14 day cycle of his clinical trial drug giving us a 14 day window with no clinical trial drugs. Today things went completely different.
Naaman sleeps while mom holds him
Mom smiling out of sheer exhaustion. That giant tank is oxygen/helium

Today became another sober reminder at just how touch and go things can be and how things can change very quickly. 

Yesterday we were celebrating Naaman having completed the first 14 day cycle of his clinical trial drug giving us a 14 day window with no clinical trial drugs.  Today things went completely different. 

Nicole took Naaman in for a somewhat routine visit (if you can can anything Leukemia related routine). He was to have platelets and a blood transfusion to replace depleted numbers from his treatment and he was to have another lumbar puncture. 

He was already fasting since 6pm the night before and on no liquid since the morning. The first treatment, the platelets didn’t get started until late morning, well behind schedule. Then they started the procedure for the lumbar puncture and when in the process of the mild sedation he became restless, had rough/congested breathing and developed a barky cough. They decided to cancel the rest of the procedures for the day and they are on hold until he recovers. 

The family has all been suffering from colds this week so the medical team seems to think it may be a virus that somehow turned into what they are calling Croup cough. Naaman sounds horrible and was extremely agitated. He was given calming medicine, a dose of steroid to help reduce the swelling in his airway and a oxygen/helium mixture to make the air flow easier. He is not on necessary oxygen for breathing thankfully.  The doctors have not been concerned to date but Naaman and Nicole are both in the hospital for the night.  When I left this evening they were testing not having him on the oxygen. Hoping that he rests and gives mom some sleep. 

Nicole is a trooper and the best mom. While I was working she was with Naaman in this visit and soldiered on through the unexpected even during all the medical delays, nonstop staff in the room and while holding an oxygen mask on Naaman while he slept. It’s very difficult to try to explain to a child that doesn’t understand and make them see that what you are doing is to help them.  

More to come. 

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