The Fever that Changed the Journey Part Three: Calling Nurse Number Four

Calling Nurse Number Four

Throughout Rhyse’s 20 months of life he has had numerous platelet transfusions, more blood draws than I can count, three bone marrow aspirations, a gtube placement, several sedated EKGs, and of course a sprinkle of unscheduled ER visits and nineteen days in the NICU. IVs are a ‘normal’ part of his life. But Rhyse’s body isn’t so obliging. Between Rhyse’s small stature, petite bone structure, hypersensitivity to pain, and veins as curly and winding as his gorgeous, red hair IVs are a terrifying experience.  What’s more, finding a nurse who can stick a vein and get a successful flush in less than three attempts is next to impossible.

On this day Rhyse endured the worst experience with IVs to date.  Already screaming from the effects of a high fever, complete with shivers and tremors, nurse number one scanned his limbs over and over,  careful to choose the best site; his left arm.  Historically Rhyse’s left arm has indeed been the best donor. But after a year and a half of donations the veins can no longer hold a flush, and I warned the nurse as such. Nurse one tried anyway.

After nearly twenty minutes of fishing for a vein in two, left arm sites and watching them blow, Mr. Nurse number one gave up. I reminded Mr. Nurse Rhyse was a hard stick.  I think he was actually relieved I wasn’t upset with him for failing: most nurses do. He bandaged up the two holes and called nurse two from Peds Transport for help.  When nurse two and her helper arrived they were confident they could “save the day”.  I wasn’t impressed with their enthusiasm.    We needed skill, not pride. True to form nurse two and her helper were overwhelmed with the challenge and gave up as well.  Now two more sites were bleeding, and two more kiddy bandages were applied.

At this point I noticed Rhyse’s blood was unusually thin. I knew from experience his platelets must have dropped to about 50k.  Only three weeks prior they were 93K, and had been holding in the 90s for nearly a year. I didn’t say anything to the nurses. I have also learned that if I come across as too knowledgeable, nurses get offended.  I just tucked that notion in the back of my mind and concentrated on cuddling Rhyse throughout the ordeal, though by this point my nerves were shot and so was Rhyse.

With continued screaming and still no Tylenol I was getting overwhelmed with emotion.  I held Rhyse close to me throughout every attempt, but no amount of mommy love can take away such fear and pain. I can’t even say, I’ve ‘been there too’. I haven’t.  I can’t understand. I can only hold and love.

When nurse two failed a NICU nurse was called in.  Rhyse was now beyond the point of no return.  Each time someone slid open the sliding glass door and walked in he pointed at them, looked up at me with eyes filled with fear, and shook his head no.  That was the first time I had ever seen him put two communication pieces together: and the last time. And when they stepped towards him, he screamed for all he was worth.

NICU nurse three spent an inordinate amount of time trying to find a vein that looked straight enough and large enough for an IV.  After much fumbling she made her two attempts, and failed.  Now we were up to six bleeding sites tightly covered with gauze and daffy duck band aids.

Nurse one came back on the scene asked if I knew anyone in particular from Hematology who could help. I told him, “Mary”. Historically she was the only nurse on the tenth floor who was successful during his twice a week platelet transfusion days.  Nurse one called Hematology, but Mary wasn’t on the floor that day. Another nurse came in her stead. She tried. She struck out.  She left two more holes to bandage.

Nurse one now at his wits end got the OK to give Rhyse Tylenol orally. Finally.  I still don’t understand why someone let two hours lapse before agreeing but those aren’t answers you get in the ER.

After two and a half hours of IV attempts Rhyse still needed an IV line. Honestly I don’t remember where the fourth nurse came from. The first stick was a bust, but the second—in the temple—finally held the flush; at least for a few hours.  The nurses left the room leaving behind trash, a bloodied blanket, rolls of medical tape and used scissors sitting on the gurney.  I cleaned up after them, as usual.

With IV placed, Tylenol administered, and blood draw sent to the lab the ER doctor arrived with his game plan.  Mind you it was now 6pm, three hours after arriving and both Rhyse and I were beyond exhausted.  I don’t remember the doctors’ name.  And it doesn’t matter. This ER doctor lit up when he saw Rhyse had Noonans. Early in his career he had interned with Dr. Noonan herself.  Finally a doctor who didn’t have to look up Noonan Syndrome on wikipedia before coming into the room!    By the way doctors, if you want to solicit complete distrust in a patient’s mom, just keep telling them that you had to look up Noonans on the internet!  At least pretend you know.

Dr. ERs plan was to start eliminating possible issues from the top.  He ordered a chest x-ray for pneumonia, CT scan for possible stoma infection, and antibiotics for just in case.  In truth neither I nor the ER Dr. believed anything would come of the tests. Rhyse probably had a virus that overtook his fragile, petite body and needed more powerful drugs than I could give him at home.

After a time transport arrived and wheeled Rhyse and I to the x-ray room.  Just the movement alone distracted Rhyse and he began to calm down just a stitch.  By the time we were in the room he was interested enough in his surroundings that I was able to put him in the x-ray chair without any fuss.  The tech quickly took two pictures and then wheeled us back to our tiny, stale room with the ugly pastel curtains with lines and circles.

Within minutes Dr. ER had the computer images in front of him, and a report from the tech that said, “slight thickening in the lungs possibly due to lung virus.”  Regardless pneumonia was ruled out—as expected.

The Fever that Changed the Journey Part Four: The Dreaded CT