Thrown for a Loop

A lot has happened since my last post! Let me just summarize January until now....

Wright graduated the NICU on January 24th! Yay!

Brendan had his ileostomy reversed on January 27th!

Brendan had his PICC line removed on February 4th!

Brendan passed his carseat test on February 13th!

We were told he would go home on the 15th.

February 14th, Brendan had a major breathing episode. I told the doctors I wasn't comfortable taking him home and something just wasn't right. They disagreed, said that I am a competent mother and can bring him out of his episodes. Thanks for the vote of confidence but no. I have another newborn and a three year old. There has to be sleep and sanity at some level. I demanded tests to be run.

Brendan had an airway study on February 21st that showed his airway was obstructed below and above his vocal chords by more than 50%. Brendan coded after this procedure. Scariest day of my life. Thank God for his primary nurse!

A nasopharyngeal tube is inserted to try to give him some relief on February 29th. No luck.

We have gone back and forth with the doctors on whether Brendan should have a jaw distraction due to his breathing and eating issues. It was taken off the table and we were instructed to give him a G-tube.

Brendan undergoes surgery to have a G-tube placed. During this surgery they also repair two hernias, he has laser eye surgery and his circumcision. This was all completed on March 4th.

Brendan graduates the NICU on March 10th!

COVID 19 Pandemic hits March 12th. Welcome to Isolation with Twin Newborns.

We are told Brendan would eat primarily through a G-Tube until he mastered bottle feeding and that he should sleep on his side until he grew out of his breathing issues. He didn't come home with oxygen or a monitor to track his vitals.

Brendan suffered in his sleep from the day he came home until present. We kept him on his side and we fought with him every night for him to be comfortable in his sleep. Honestly, I did not know that he was struggling to breathe. I just thought he was a restless baby with reflux. I was told by his doctors, on his side, he was fine. Looking back, I feel like I let him down by not realizing he needed more help.

Finally, we got a multi-disciplinary video call with a group of doctors from Sacred Heart in Pensacola.

They instructed us to do an overnight pulse-oximeter study, start him on three inhaler meds and a reflux med.

After the overnight study came back, it was clear that Brendan was obstructing in his sleep and his oxygen levels were dipping far too low.

The next couple of steps weren't handled how any mother would've liked. A nurse's assistant called me to tell me that Brendan needed to be on oxygen and to expect it to be delivered that day. No explanation. Well, I had a million questions and she didn't have any answers. I was hysterical. He hasn't been on oxygen for months! Have I deprived my child? Have I harmed him? How bad is it? This assistant didn't know.

Here comes Mama Bear. I immediately start calling every doctor, nurse, medical professional looped in with Sacred Heart that I know. After many emotional discussions, I at least get somewhere. The pulmonologist and the surgeon's nurse both tell me that the surgeon that I am dying to talk to is going to call me back by the end of the day. But guess what? It's Memorial Day Weekend and it's Friday. If he doesn't call me back today, I won't hear from him until Tuesday at the earliest. To no one's shock, my phone never rang.

Much to my surprise, Monday night around 6:30pm, the surgeon calls! He isn't sold that Brendan needs surgery until we get a sleep study and/or a bronchoscopy (upper airway exam) along with a drug induced endoscopy. Until then, we're going to get Brendan in to be seen in person ASAP with the ENT, who will schedule the bronchoscopy. Who, if I'm being honest, isn't my favorite doctor, but at least it's a step in the right direction. Now we wait what feels like an eternity for that appointment to come. I must add here, that it's been 4 days since the oxygen has been ordered and I still haven't received it. I was still fuming about that, as well. Honestly, still mad about that!

Longest story every. Sorry.. ok so I go to the ENT appointment and really get nowhere. The ENT, who I care for so much.... keeps telling me that Brendan is a "very complicated case". Thank you for the update... I KNOW THAT. That is why I'm here! The only reason I drove an hour and a half to see you is for you to order the test that will tell me what is wrong with my son. He brings the pulmonologist in who tells me absolutely nothing new, so that was a waste of my time. I figured someone may at least bring up that they really messed up sending Brendan home for two and a half months without oxygen.. no chance.

After much hemming and hawing, the ENT says that he needs to order a bronchoscopy and endoscopy. Amazing! Ok so let's order it! He sends his nurse in to tell me that another nurse is going to call me next week to schedule the procedure. Next week? No, it's Tuesday, I'm going to need to hear from her THIS week. I asked her about how long she thought it would be until he would be scheduled for the procedure and she says 6-8 weeks.....!

Goodbye Sacred Heart.