I have been waiting, very patiently I must admit, for several months now to discuss the results of Nathan’s first Pulmonary Function Test (PFT) with his specialist. Being that I had to cancel his appointment that was scheduled for yesterday (Change…) I am still waiting, only somewhat patiently now.
Today I reminisce about a very stressful day, January 15th, 2009. Nathan was only 5 months old and was scheduled to have his 1st PFT test done at the CF clinic at Morristown Hospital.
First major anxiety: arriving on time
We needed to arrive at the hospital to check in and register by 8am. Taking traffic and inclement weather into consideration, we left the house at 6am.
Second major anxiety: not feeding a hungry baby
Nathan had his last meal at 2:30 am and was not allowed to eat anything past that point because of the oral sedation he would be receiving. He was however, allowed to drink Pedialyte until 7am.
After registration, we settled into our room and I dressed Nathan in his hospital gown. It was adorable. Pink elephants. Pink whales. Pink dinosaurs. Of course I loved it, it was Pink. Pop Pop was not as happy as I was with this hospital gown and requested a blue one instead.
Third major anxiety: consenting to the unknown
I was then offered explanations of what would be occurring and presented with consent forms. By the way, I think it is completely unfair that there is written proof that I personally consented to everything unpleasant that Nathan has undergone since birth – from tests, blood, shots, etc.
We waited and watched Baby Einstein – Baby Neptune while we waited for the team to arrive and the equipment to be calibrated.
Fourth major anxiety: sedating my baby
The nurses recorded his vitals and by 9:30 am administered the sedative (Chloral Hydrate). He fought it. It tasted disgusting. He screamed. I rocked him. He lost. Sedative 1 – Nathan 0. He went completely limp in my arms.
Fifth major anxiety: The “Maiden Voyage” of the PFT Machine
First let me preface that I trust and respect Nathan’s CF team completely. That being said, this where the majority of my anxiety comes into play. There were 5 people administering the test and monitoring him.
The chamber was calibrated with one blanket inside to act as a cushion under him. For his next PFT I will request that they calibrate the chamber with two blankets inside because he little legs were cold. Each time they opened the chamber between tests I covered him with a blanket.
Then they put the mask on and sealed it to his face with putty before connecting it to the machine. I believe that the correct order of operations would have been to connect it to the machine before sealing it to his face. This way my sedated son would not be irritated or disturbed at all.
There were several different steps including forcing air into his lungs and forcing air out of his lungs. At one point when they were inflating his lungs with air, I noticed that his cheeks puffed out appearing to have taken his breath away. Nobody else noticed this because all 5 people were watching the monitor. The tests were then repeated after his Albuterol treatment.
I would also like to emphasize that I was informed this test would take 10 to 20 minuted to execute. This may be the case in the future when the instruction manual is not necessary to complete the PFT. 2 hours later, upon completion of the PFT, I discovered that this particular machine was brand new and this was its “maiden voyage”
I held him for about a half hour and then tried to wake him up to see if he could swallow some Pedialyte. After he was able to swallow I fed him. The good stuff. 10 hours after his last meal.
__________________________________________This PFT was performed in order to determine his current lung capacity and to be used as a benchmark for future comparisons. I would just like the results and instead I am waiting, only somewhat patiently. I am waiting to receive his insurance card so I can reschedule his canceled appointment and discuss the results of the PFT. Obviously no news is good news but I would like to have the results regardless.
I would also like to mention that I researched Pulmonary Function Tests before going to the hospital January 15th. The only information that I could find were technical explanations of the actual tests done and not what to expect as a parent or a patient. It is my goal to create an informative guide for such procedures and unknowns. Give me time and it will be done.
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