What happened to Baby Ethan?!

Over the month of February Ethan would randomly have these crying spells where he would cry really hard and 'tire out'. His body would go limp for 15seconds to a minute (while still breathing) and then he'd snap out of it and start whimpering/crying again. I didn't know how to describe it and it happened at random times. Sitting up playing, eating, while I was reading to him... I finally caught one of his spells on video (2/19). The next week when we went to weekly feeding clinic (2/25) at the hospital I felt impressed to just stop by the cardiology office in the other building and show them the video because to me it looked heart related. The cardiologist wasn't in so I showed it to his medical assistant who said she'd tell Dr. Chang and call me back. No one called me back.

The next day Ethan threw up towards the end of the day, something we had resolved with the GI doctor and medication a month earlier so I made note of it on my calendar. That whole weekend he threw up every feed just like he did earlier and we tried to figure out what was wrong. We didn't change anything and he didn't have a fever. Monday morning I felt impressed to call his pediatrician, explained the throwing up, and also asked if he could look at a video of this weird crying thing. It was confirmed that Ethan was not sick with a flu and that I should contact GI. When I showed him the video after discussing his throwing  up, the pediatrician was concerned and told me to show it to cardiology. When I told him I had, he expressed his concern again and called cardiology himself. Ethan's cardiologist wasn't in and so the pediatrician spoke to another cardiologist who wrote the order for a 48 hour heart monitor. We went in the next morning (3/1) and got all set up (that cute picture of him sitting in the office). Ethan had a couple small spells during that time that I recorded. When I took the equipment back Thursday (3/3) I was told it would be 7-10days to process the results. I needed to schedule that appointment.

Back to his throwing up problem, I was talking with the advice nurse twice a day and was adjusting his feed volume, feed rate, feed frequency, and mixing breast milk with pedialyte. He was still throwing up and the nurse kept asking if it was better and what made it better. By Thursday I was frustrated because he wasn't throwing up as large a volume so it was a little better but there were so many variables I couldn't say why it was a little better! And he was still throwing up! The nurses weren't calling me back and when I called I only got the answering machine.

OK, now it's Friday (3/4) and he wakes up screaming again because his tummy is upset and he's throwing up. I gave him some anti nausea med GI prescribed the day before and that helped a lot!  3 hours later he's sitting up playing while I pump and he goes into his crying spell only this time he has seizure like symptoms and stops breathing for 5 seconds. After he came back, I called the pediatrician and got an error signal. After 4 tries I called cardiology. By that time he was acting normal and the medical assistant sent an urgent message to cardiologist. I called pediatrician back. They said it did sound like a seizure, told me to call cardiology and sent a message to pediatrician. Pediatrician called back first. (I LOVE HIM!) asked about cardiology and told me to contact GI as well. Called GI and left a message asking to call me back right away. Cardiology called back and started setting up a referral for an EEG with neurology next week. GI called back and I had a list prepared and said this has got to stop! It's been a week and he is not much better and we have changed so many things I don't know what has worked and what hasn't. I want to get him into the office. This calling thing isn't working. She said she'd talk to the doctor and call back.

Michael gets home for lunch and I just started crying and explain all that's happened. He takes Ethan for me and changes his diaper while I try setting up all the appointments I just called about. While on the phone with cardiology trying to schedule the heart monitor results appointment 7-10 days out they tell me the cardiologist is booked and that he wants to see Ethan beginning of April. At that point Michael yells- AMANDA HE'S NOT BREATHING! He starts turning blue Michael's ready to do CPR I'm telling the receptionist that April will not work he needs to be seen NOW because something is very wrong. Ethan starts breathing again, the cardiologist is on the phone, I start crying and hand the phone to Michael. They talk about what happen and mention that he could be holding his breath and having blue spells which is common at his age. Ethan does it again 15min later but he came back... Maybe it's just breath holding.

Michael goes back to work after I've calmed down. I'm playing with Ethan and he cries for no reason, stops breathing, turns blue,  only this time it was longer. He came back but was so tired and moaning. I called the pediatrician and he told me to just go to the hospital, we needed it resolved now and he called over to the cardiologist to explain his concern. I threw together a quick overnight bag for Michael and I, grabbed Ethan's emergency things, threw pillows and bathroom stuff in the car just in case and went to the ER at 3:30pm. He did his blue spells twice in the ER and was admitted to the PICU.

They did an EEG last night, no seizures and no residue seizure activity so he did not have a seizure that morning (cross that off the list). We did an echo and things looked bad. Severe pulmonary hypertension and they said he might need a breathing tube but the anesthesia to put the breathing tube in was risky with pulmonary hypertension. We waited until morning. He did one more blue spell in the PICU (so 7 total). I held him in the morning trying to calm him down because he was crying and wouldn't settle. His nostrils were flairing, he was struggling to breathe, his bnp was 2,000 and it should be below 99 so we knew we had to intubate.

Intubation yesterday went really well and his central line placement went well too even with all the scar tissue. His echo looks MUCH much better after intubation and milrinone so we are stable again. His lungs are saturated because of the build up of blood from pulmonary hypertension which is why he is struggling to breathe. This also explains why he was throwing up so much because his heart couldn't work to digest the food in his stomach. Everything is making more sense.

I am so grateful for Ethan's pediatrician who responded quickly, listened to my concerns, called the cardiologist and got the ball rolling, and finally told me to go to the ER when I wasn't getting anywhere with cardiology and he too felt it needed to be addressed now. I am grateful it was Friday instead of the weekend but also that Michael was home for lunch when I needed him most and that he could take off the rest of the work day and go to the ER with me. I am grateful we made it to the hospital and that we are in the ICU rather than still at home. It is a relief to be here where the doctors are working together rather than the load being all on me to figure out what is wrong and be calling everyone leaving messages with nurses and assistants and never talking to or seeing the specialists. We are all together this weekend and are with our friends again in the PICU. They know Ethan and love him. We are so blessed with how nicely things have worked out getting here when we did and how we did. I am at peace and though I miss Ethan's smiling face and voice, he is getting the help he needs. Hang in there little buddy. We love you and so does your Heavenly Father and Savior Jesus Christ who is with you. <3

Ethan and mommy in the ER.