Alright, all you g-tube mommas out there. Please tell me this gets better!
We got discharged on Sunday with no pump. It seems social workers only work the week days and if you need DME to go home, well, your just out of luck. Unless you want to stay an extra night. Which we didn't. So I gave them pure confidence in my abilities and got an ok based on my promise to get a pump once we got home.
So, I have been gravity feeding him 100 mls every 3-4 hours. The problem? Liam is not feeling the benefits of the tube yet. In fact, I'm pretty sure he's extremely ticked off by it. He's actually torn both of his sutures out some. And, for the last 4 nights he has woken up crying every two hours through the night. He's an awesome sleeper normally!! During the day, I can't move him into certain position or he locks his body and clenches down tight. I can't even put him in his car seat! It got so bad today that I called one of the NP's from Chapel Hill and I told her that Liam seemed to be in a lot of pain and I asked her if it was normal. She said he should be getting better every day. Well, um... no. He isn't. He's worse now than when we left UNC! He didn't mind his 2 hour and 45 minute car ride home on Sunday. Right now, I can't even get him into his car seat while it's sitting in the house!
She asked what we were using for pain. Um, nothing. We were discharged without any plan for pain.
She apologized and said he should have gotten a script for something to manage his pain and she promptly called Realo and ordered up some hydrocodone (or by it's common street name: Vicodin). He's gotten two doses of it today and while he did have intermittent times of peacefulness, he still isn't my Liam.
PT came to work with him this morning. I didn't figure she would be able to get far, but it was worth a shot. She couldn't get him to do anything. Before leaving she said, "I know you are thinking that you probably shouldn't have gone through with this. But in time you'll see it was the right decision."
Uh huh. She knows me all too well.
Please, tell me this gets better!
