(please keep in mind, I have glossed over a lot, and left out a lot, and forgot probably even more. Short of shuffling through medical records, this is what you get)
When he was in the hospital, he had a little trouble breathing, but a lot of newborns do. It was considered normal.
When he was about five days old, I rushed his sister to the hospital, because she had a fever of 104. She was sent home with a diagnosis of pneumonia later that evening.
She and I got home, and I had to turn around and take him in, because he was blue, and was barely breathing. You could hear him trying to breathe from across the room. He was admitted immediately and we were told that he had RSV. After being there for a day and a half we were sent home, even though his breathing was still very, very loud.
Less than 24 hours later I took him back. He was blue, and would not wake up. It took five tries for the nurses to get an IV in him. He never opened his eyes.
That time we were there for a week. We were discharged with an "I don't know. give it a week or two and his breathing issues should resolve, he's a newborn"
His primary care doctor was not happy with this and put him on an apnea monitor and sent us to an ENT.
The apnea monitor would not stop going off, but that was expected. Then it started going off for low heart rate. That was unexpected. So we took him back to the hospital, where we sat for a week while test after test was run.
He had a bronchoscopy, and a laryngoscope, where we found out that he had laryngomalacia and Tracheomalacia . He was also Diagnosed with GERD, They did a sleep study while we were there, but the nurse unplugged all the equipment on accident, so the sleep study was botched. The pulmonologist read it anyways, and said that he could be taken off the apnea monitor, because the small window of time that the equipment was plugged in showed a minimal amount of apnea.
After being discharged, his primary care said to leave him on it. I am very, very glad we did.
I woke up one morning to it going off for both heart rate and apnea. Eddie was blue and making a horrible noise like he was choking. I Grabbed him and flipped him on to his stomach and started to call 911, but by the time I had punched in the number he was breathing again.
He was hospitalized again after talking with his doctor, and more tests were run. He had a PH probe to confirm the GERD. He had ultrasounds of his soft spot , and an ECHO. The Echo showed he has a hole in his heart. He set the alarms off constantly. His breathing would stop, his heart rate would go as low as 50 beats per minute , and his 02 saturation would drop in to the 70's while he slept.
It was so bad they hung the ambu bag on his crib and kept the crash cart outside his door. After his roommate was discharged, they left that side of the room empty.
We were sent on our way with another set of "We don't really knows" Along with "Keep him on the apnea monitor"
At our health insurances request we got a second opinion.
He went to another hospital. He had another surgery, a supraglottoplasty to help open up his airway.
It did not work.
He got a referral for another sleep study .
We went to Children's of orange county and checked in overnight for their sleep study.
The results came back that he has both obstructive and Central apnea , mostly Central . We were referred to a pulmonologist.
His pulmonologist did another surgical procedure , and told us that it was beyond his scope of practice. After, while in the recovery, his heart stopped. For a few brief, very scary seconds.
Central apnea is neurological. Obstructive means he needs more surgery on his throat .
Eddie was put on oxygen, because his o2 sats are low enough when he sleeps to hurt his brain.
His medication takes up a whole section of our fridge.
So now, we wait. Next week he sees the next set of specialists, where we hope to find answers, and help for our little guy.
