nate...part 3

If you haven't read parts one and two, you can go back and check them out.

Before I continue though, I want to back up for just a moment.

We had hung out at the NICU at the hospital long enough to know a few things. First we knew there was no McDreamy or McSteamy at this hospital. However we did meet our share of McScaries and Dr. Poorbedsidemanners. Second, we knew the routines, which was huge for me. The people that buzzed us in knew us well. The nurses let us talk on cell phones at bedside. And we knew there were special conference rooms for parents to meet with doctors. We knew we definitely never wanted to be called into one of those rooms. (Can you feel the foreshadowing?)

Yes, we had our "meeting" with the neonatologists and neurologist and they told us they'd like to transport Nate to Kansas City to the children's hospital, where there was a geneticist on staff. Up until this point, the doctors had been consulting with geneticists about Nate's case.

So on a rainy Thursday in April, Nate and I headed to KC in the transport ambulance. Only one parent could accompany him and Jeremy had classes, so I went and my parents drove up separately to meet us up there. Nate rode in the back, of course, along with a respiratory therapist and a nurse practitioner. I had the pleasure of riding up front with a driver that totally sucked at small talk. That was one.long.ride.

When we did finally arrive, they whisked Nate away to get him settled in his room. The NICU was full, so he was admitted in the PICU. I had paperwork to fill out and I wanted to find my parents. So I grabbed my cell phone and let my mom know where I was. Before I had even hung up the phone, a guy, filling the vending machines no less, scolded me for using my phone. Apparently, they have a "no cell phone usage" rule anywhere in the hospital. Remember, I was used to using our phones at bedside at the other hospital.
Well that just put me over the edge and I broke down and cried. I'm sitting in the waiting room outside the PICU in a strange hospital where I know NO ONE. My son is on the other side of the giant locked doors. My husband is miles and miles away. And I just got yelled at for using my dang cell phone.

The day got better though. I was able to get a room at the Ronald McDonald House, which would become my new home for the next several weeks, and Jeremy met me there late that night.

Jeremy stayed in Kansas City from late Thursday night until Monday afternoon. Would go home for classes on Tuesday and Thursday and then return again for the long weekend. We got into a good routine. We had several visitors. People we knew. People who were friends of friends. Relatives I didn't even know I had. My best friend Amy even came up and stayed several nights with me, which was so nice. You know who your true friends are when they are willing to have a sleepover at the Ronald McDonald House!!

So back to Nate.
He saw every specialist you can imagine. And they did every test they could think of. Everything led back to one decision. He needed a tracheostomy and feeding tube. By this point, we were just ready to do whatever we needed to do to get our baby boy home.

Then Nate tested positive for RSV. He was placed in isolation and we had to wear a gown and mask to visit him. And we were told he could not have surgery for several weeks. Fortunately, after the culture came back, we learned that he'd had a false positive so surgery was back on.

One of the scariest days in Kansas City was the day before his surgery. Not because of my fear of my child going under anesthesia. Not because of my fear of the unknown with his care. But because of tornadoes!
We started noticing the nurses running around, dropping off blankets in the rooms and asked what was going on. We found out we were under a tornado warning and the storms were headed straight for us. When I asked where they take the patients, the nurse told me that they take most of them to the hallway. But Nate was on the ventilator (yes, they had put him back on the vent the day before to allow his body to rest prior to surgery) so they would cover him with blankets to protect him from breaking glass. Now this was not something a mother wants to hear!!
Thank goodness the storms completely missed us.

Nate's surgery was on May 5. In addition to the trach and feeding tube, the doctor also performed a fundoplication, which prevents vomitting, which in turn would help with the aspiration.
It was amazing how much better Nate looked after the surgery. His coloring was better. His heartrate was lower. He was awake more often.



Following surgery, Nate was on the ventilator and was gradually weaned off it and oxygen. The surgeon performed the first trach change and then we were finally moved to a private room. We were taught how to feed Nate and do all his trach care. We took a class in infant CPR.

And finally it was time to head home. So we packed up our car with all the usual baby necessities, suction machine, pulse oxymeter, portable oxygen tank (just in case) and all the other medical supplies we might need. We could barely fit the baby in the car for all the medical equipment.

We had finally made it home!! After 7 and a half weeks in the hospital, we had Nate at home with us.

And knowing we could never fit our whole family and Nate's medical equipment in our current vehicle, we bought a mini-van the next day!!