But For Now....

Three weeks ago, the morning we were going home....

As many of you know, Henry is still in Philadelphia. I have jumped in, from Ron being here for two weeks. Our "Game Plan" from now on, for whenever Hank is here and we have no idea for how long, is to alternate as much as possible, IF possible, to give each other equal time between here and home. It must be stated once again at this point how incredibly accommodating and caring our Wegmans family and supervisors have been with us. I mentioned to a friend that sometimes i feel like our situation is getting "old" to everyone; the constant trips back and forth to hospitals and never being home and always having to be out of work (at least one of us). Kind of like how the novelty of a newborn wears out after a few months. But she said that was ridiculous and it's not like that, it just feels like that from my perspective. Perhaps she's right. I still find it very important to acknowledge how giving, thoughtful and wonderful everyone in our lives has been.

At the time of this post, it is 8:30 Memorial Day Monday. My plans are to spend a lot of my day with Mr. Hank and attempt to rock him. I tried to do it last night when i arrived. He was sleeping and I thought it'd be nice to snuggle up, as I've done in the past. However, he woke to start fussing and if he could talk, would have said, "MOM! Look! I'm really in a lot of pain, please put me down, this is not comfortable." Fair enough, little guy. He just got brought over to the 'step-down' unit after being in Intensive Care for four days after his nissen surgery. I had mentioned previously that the nissen was going to be performed laparascopically. Ron informed me on the day of surgery that it could NOT be done that way and was performed in a more traditional, slightly more invasive surgery through an incision on his belly. I would like to ask today why that was chosen and what that means, if anything. Right now, i know it means pain for Henry.

I'll admit, I'm a little leery about seeing his surgery site (he was swaddled last night). The nurse explained to me that his GJ tube site has been leaking a bit and they think it is due to his nissen incision being so close in proximity and that all his stomach tissue (inside and out) is irritated and inflamed. It's not so much the physical appearance that i dread. I'm cool with that by now. It is seeing him in discomfort over yet another THING that needed to be done to him to keep him comfortable and 'functioning' and we have yet to even get to The Big Heart Surgery to FIX his heart. That is due in several months. And his cleft lip surgery has obviously been put on the back burner as well. I've heard that this first year is easily the hardest. At this point, as i type, i'm eager for this year to be over. In my mind, I keep coming back to how Henry looked the 5 days in a row before we came home this last time three weeks ago (it's been THREE WEEKS ALREADY!??!?!): he was vibrant, alive, alert, clear, happy and SMILING. I do hope i can see that smile again VERY soon!......