Last Thursday night, we pressed his nurse for a time frame. Her best guess was two more weeks. While we weren't happy with the length of time, it was something we could hang our hat on.
Saturday morning, Brian went for the early feeding, and his nurse dared to mention the "D"-word...
Not only was she talking about discharge... she was certain it would happen within the week!
Holy cow... WOW!
At some point in the last few days, Connor has turned a corner. He's a totally different baby. Saturday night, his nurse went to NG tube feed him, and as she's getting the pump ready for his feeding, he yanked out his NG tube. He got so upset, he wouldn't settle down until she put the bottle in his mouth. By Saturday morning, he went to PO ad lib (all feeds by mouth, whenever he's hungry). BIG step towards the door.
Since then, he's fairly consistently taken 2 ounces at each feed, every 3 hours. He always wants more than the 2 ounces, but as we've painfully discovered, his tummy gets overfull and must.empty.immediately. Sometimes we're quick enough, sometimes we're covered in puke. This will change in time, as soon as his stomach grows a little more.
His reflux seems to finally be under control. He still spits up easily, but his pain is a lot less. He's still sleeping on an incline, which we'll have to continue here at home.
His cannula was weaned completely by his nurse on Thursday night, and he's been doing great. Desats are few and far between, and usually occur only when he's upset and crying... just like any other baby.
He's lost a little weight over the past few nights, but that's to be expected since he's been weaned from his IV nutrition. As of 30 minutes ago, he's finished up his 14-day course of antibiotics due to the last infection. They will take a urine sample 48 hours from now to make sure that his UTI has disappeared. This sample will be cultured over 24-hours to see if it grows any nasty bacteria... we're hoping for a negative on Friday morning. That will be Connor's ticket to freedom!
He's got a busy week ahead of him... priority #1 is no more setbacks! He'll need to continue to gain weight, start some new prescriptions, and have a few tests run.
One of Connor's primary nurses (those nurses we love so much) has recently graduated with her Bachelor's degree and the school paper wants to interview her. She requested to have her picture taken with Connor, and we were more than happy to oblige. Oftentimes, these college stories will get picked up by the very local papers around here. So, tomorrow morning is another photo shoot for Connor!
On Wednesday, he'll have an MRI to follow-up on his IVH. We'll sleep-over at the hospital with him that night... all 3 of us, sleeping in the same room... sounds heavenly, doesn't it? Friday morning his PICC line should be pulled.
Connor will likely come home on 4 different prescriptions. But, he won't come home on a cannula, an NG tube, or a monitor.
Connor will have follow-up appointments with specialists up the wazzoo... he will need to see a neurologist, an endocrinologist, an ophthalmologist, a nephrologist, a gastro-enterologist (are there any -ologists I left off the list??), follow-up clinics at the hospital with therapists, weekly weight checks with his pediatrician, and likely home visits with therapists from Early Intervention. Luckily for us, the first appointments are scheduled for us by a social worker at the hospital. I just can't imagine trying to keep all of that straight right now!
Needless to say, we're a little swamped right now. Trying to get as much as we can done before we begin our hibernation.
For now we're praying so hard that nothing delays his homecoming any further - we can hardly believe this ordeal is nearly over. We're so ready to move on... to have our little family under one roof.
It's going to be a Good Friday!