5 1/2 weeks

This week has been quite the emotional roller coaster ride. On Wednesday, the doctors said they were going to do more tests, wait a few more days. Josh and I were frustrated by this. We feel like at this point, more time and more tests doesn't seem to be helping anymore. We are still no closer to an answer nor to a solution. Josh and I met with the head doctor and expressed our concerns. Honestly, we came out of the meeting teary-eyed (ok, just me) and confused. We talked about it later and we couldn't really remember what we talked about with him or what plan of action they were going to take. I'm not sure much got done in that meeting!

So the next day, the nurse practitioner calls and says they won't be making changes, just waiting a few more days. I express to her my frustration with their process and that I feel like nothing is being accomplished by him staying there, we could feed him through a feeding tube at home. She talked to the head doctor and relayed what I had said. She called me back a few minutes later and said he gave the okay to send Bennett home in a few days. So they started the process-finishing up tests, teaching us how to use the feeding tube, switching him to the oxygen tank we will use at home, switching him to the monitors we use at home, and finally, having us sleep over last night and take care of Bennett and all of the machines all night.

The night went well. Bennett was pretty tired because the day before, they gave him a heart echo and had to sedate him for a few hours so they could get an accurate reading. (I was NOT thrilled about this, but we did try other things to calm him down enough to perform the echo). But he ate ok, started eating better as the night went on. He woke up, we fed him by bottle, gavaged him the rest through the feeding tube, then put him back to sleep. He made cute little grunts and squeaks.

Then, when the nurse practitioner came in to discharge him, she felt like he was "head bobbing." That means she felt like she was breathing extra hard. He did look like he was breathing a little harder than normal but head bobbing is a normal thing for him. So she said she wanted another doctor to look at him. She came back 30 minutes later and said that doctor was busy but they had decided to keep him another 24 hours and do more tests.

Josh and I are frustrated, perplexed and heartbroken. We have been so close to getting him home now 5 times. We know that he will come home in the right time. And we want him to be healthy. And we don't want him to stop breathing at home. But we're not sure the doctors at UVRMC know what to do anymore. They talked about transferring Bennett to Primary Children's hospital in SLC. We feel like that would be hard logistically with Nolan, but it would be nice to have a different set of doctors look at him. They might have an idea of how to help him.