If all goes well tonight and tomorrow, we get to bring Ryan home Thursday afternoon. Two whole weeks at Children’s and the end is in sight! It’s going to be a big adjustment but at least we’ll all be under the same roof. Travis is with Ryan and I am at work tonight; we have been using face time which is fun so we can all see each other. Ryan is happy and comfortable thankfully. He had another large bowel movement this morning which just confirms that his bowels are awake finally and obviously moving. I don’t know that anyone has ever been so excited about poop! His stomach is still another story. The plan for tomorrow, at least for now, is that we will meet with home health in the afternoon to get the feeding pump Ryan needs to be on 24 hrs a day, learn how to use it and then get discharged. I’m sure home health will follow up with us once we are home but I’m not sure how often. They still don’t want Ryan eating or drinking anything by mouth and we have no idea when that will change. All his nutrition for now will go through the feeding pump directly into the j tube which feeds into his jejunum (small intestine). It’s going to be a huge adjustment having him on a pump that has to be with him all the time and even bigger adjustment not letting him eat. The poor kid won’t understand, and that simply breaks our hearts. There isn’t much that gives him joy but eating his chunks of cheese, Cheerios and eggs is something he loves and very much a part of his routine. Hopefully his stomach will start working again so we can get him back to his normal.
In the last five weeks, Travis broke his foot, had surgery to put a pin in it, Ryan had brain surgery, he’s had three stays in three different hospitals, two trips to the ER, an ambulance ride to Omaha, a PICC line, TPN nutrition for 12 days, Travis lost his job last week, surgery to put a g/j tube in, 24 nights in the hospital, only two nights as a family under the same roof, Travis and I have not even slept in the same bed since January 29th. Wow….that wears me out just thinking about it! Yet during these difficult and emotional weeks, we have been so very blessed by many of you. I can’t tell you how much it means to be cared for. We’ve received meals, cards, money, visits, encouragement, help with our older kids, prayers. It’s hard not to feel like a charity case, but we realize we are loved and can not express our gratitude for all the support. I don’t know how we would have made it this far without family and friends, even from some people we have never had the privilege to meet.
I don’t pretend to understand why all this has to happen at once but I have seen the goodness of God every step of the way and know He will continue to provide what we need. I keep saying he knows what we need before we even know we need it. And we are so grateful. There are still so many unknowns and stresses with Ryan’s health and Travis’s future employment, but hopefully Ryan will continue to improve so our coming home plans don’t change. Now that will be something to celebrate. I’ll let you know tomorrow!