Submitted by kim on Sun, 07/13/2014 - 22:03 in Nathaniel's Story
I started this blog the first week in July and have been so busy with medical stuff, I have not been able to finish the post. Let's see if I can wrap it up tonight.
The middle of June Nathaniel had a sleep study at Children's Hospital to determine his need for supplemental oxygen. Way back in March one of Nathaniel's private duty nurses felt his frequent oxygen desaturations and drops in heart rate when sleeping warranted oxygen. I disagreed. The doctor's only option given the differing opinions was a sleep study. We arrived at the hospital for admission onto the pulmonology floor on a Thursday evening three hours before the study. Hospital admission is not routine for a sleep study, but due to his tracheotomy, the lab requested medical support of a hospital admission. We were settled into our room and then transferred to the sleep lab for the test. The environment was very unique. I stayed in the room with Nathaniel and a lab tech monitored the test at the computer outside the room. I did not have access to his oxygen levels or heart rate through the night, but was dependent on the tech coming in periodically to let me know how he was doing, if he needed suctioned, or to readjust wires and sensors. She was in and out of the room every thirty minutes and every time she coughed. I did not think twice about it that night or even the next morning when we were transferred back to the floor and later discharged. But when Nathaniel woke from his nap the following Saturday afternoon with a fever, cough, and extra secretions, I remembered the lab tech's cough.
On Sunday Nathaniel's respiratory condition worsened. Every cough was followed by vomiting. His fever was hovering around 103 and we could not keep fever reducing medications in his tummy long enough to work. We were suctioning non-stop. We spoke to St. Louis Children's Hospital Pulmonology doctor on call multiple times that day. Around three in the afternoon we all agreed we had exhausted our resources at home; she told us to bring him to the emergency room. "Pack your bags," she had warned Rich on the phone. I had just put Nathaniel in his car seat when he vomited coffee ground type stuff. Nathaniel was admitted for four days for a common cold, dehydration, and stomach bleeding assumed to be caused by his g-tube irritating his stomach lining with all the vomiting.
He was discharged after we knew his stomach would tolerate feeds, but he still needed six breathing treatments, three nebulizer doses of antibiotics (common colds most often become tracheitis for Nathaniel and it did this time too), supplemental oxygen, and three percussion vest treatments a day. Managing a ten-fourteen day cold is a lot of work, but I would always rather have Nathaniel home. I will not even begin to write of my frustration that a visit to the hospital to find out if he needed oxygen when healthy probably gave him the cold that then required oxygen.
Waiting in the windowsill for final word that we get to go home!
The hospitalization was good for one thing - communication skills. Very quickly into the experience, Nathaniel started letting his opinion be known. He waved bye-bye the moment someone walked in the room. "Time for you to leave," was the message! I was impressed how perceptive everyone at the hospital was to Nathaniel's voice through the bye-bye sign. Most people would respond with acknowledging his preference that they not be in his room, then proceed to tell him the reason they were there, assure him that they would not hurt him, or even stay near the door if all they needed was to speak to me.
The hospitalization was not good for Nathaniel's coping with medical procedures. Very quickly into the experience Nathaniel started cowering in my arms in hysterics if someone wanted to listen to his lungs or touch him. Multiple attempts at an IV and blood draws does not help an already cautious personality. Since discharge we have done a lot of processing and talking about doctors, check ups, and medical procedures including playing with a Fisher Price Little People Doctor's Office set I picked up on Craigslist.
We have also been playing daily with a stethoscope. I felt the first step for healing Nathaniel's fears was letting someone he trusts use a stethoscope in a safe place. We have been reading books about visiting the doctor and watching video clips online of children getting check ups. The book I found the most basic and best suited for our needs was My First Trip to the Doctor. I used the text as a springboard to discuss medical experiences with Nathaniel. He had preexisting doctor appointments last Thursday and Friday. Both days I took the book along and read through it as we were experiencing our visit. When we were sitting in the waiting room, I read the pages about the little girl and her dad waiting to see the doctor. "We are doing the same thing right now!" I would tell Nathaniel enthusiastically. I pointed out that the father and daughter in the book were smiling and the way the room we were in matched the pictures in the book. I did the same once we were in the exam room.
It helped. At both visits last week Nathaniel let doctors listen to his heart and breathing without protest. He only waved bye-bye, asked someone to leave the room, once when she was exceptionally loud. Thankfully, she 'heard' his voice and responded appropriately to his request by giving him a little space. When the ENT wanted a chance at the ears on Friday, we lost Nathaniel's cooperation. But his ability to cope with being examined has improved leaps and bounds since the June hospitalizations. It has definitely been worth the time daily to talk, play, and pray through his medical experiences.
Tomorrow we return to the hospital to see neurology, stop by GI clinic to have Nathaniel's g-button stoma measured to see if he needs a larger Mik-key button, and get recast for his AFO braces. Add in a routine Monday trach tube change and it will be a very full day of medical experiences for the little guy. We will resume playing medical on Tuesday.