Day 197 - Dec 14, 2008

I really don't know what to say other than a lot of you have jumped to conclusions based on only what I want y'all to hear.

I will be the first one to tell you that I need a break. But unfortunately, it's just not gonna happen any time soon - if ever. The sad thing is that some of you think that is why I am screaming my head off here. So not true.

Although when we first got here I thought this hospital was awesome, every one of the family members here have seen a definite decrease in the quality of care. I am in no way saying that all the nurses and all of the doctors stink, because there really are some awesome ones here, but I will say that everyone here is overtaxed and stretched too thin. There are not enough therapists, nurses and doctors to cover the caseload and sadly, they just keep adding patients to the wing. And in the last week alone, 2 patients have left and went back to Walter Reed and one is leaving next week for Dallas because of the lack of care here. It's not just me feeling like I do. Believe me!

Now I can see this clearly, so I step in and take TOTAL care of Kevin. The only thing I do not do is shower him. I do help bed-bath him on the opposite days (not enough staff to shower the patients every day even), but I have yet to go into the shower with him. I do all of his creams, all of his garments, get him ready for all of his therapies and participate in everything. I am handed his pills and I make him take them. One day, I even had to take him to X-ray myself because five nurses stood over his bed and fought over who was going to take him. Nothing like making a patient feel like a pain in the ass, right?

So pointing all of that out - there honestly won't be much difference when we go home. And the doctors do agree with me. They see that Kevin doesn't require the care that most of the patients here do. They see that everything he has achieved has been because Breezy or I push him to do it. They see that if anyone knows when to stop - it's also us. We understand him better than anyone here and when we take him to the Fisher House on the weekends, we basically do live there. He doesn't get to sleep there, but he honestly could and it would not make a difference to us.

That being said, I am gathering that some of you think I am checking him out of the hospital the day after surgery. I am shaking my head in wonder that y'all don't know me enough by now to know that I would not risk my son. Not even to have an address. I will tell you that I was told yesterday that I can safely take him home two weeks after this surgery - but I will not be doing that. I am anticipating another 3 months or so here. We still have one more surgery on his eyes and then ONCE HE IS ALL CLEAR - we will go home.

Now I am going to tell y'all a story to show each of you exactly what I mean when I say you only hear what I want you to hear. This should make y'all stop and think before believing that you have the inside track to my thoughts.

Back when we were in Texas, the first time that Breezy went home for a while, I was very stressed. More than one of you assumed it was because Breezy wasn't there to help. The truth of the matter was that over a long holiday weekend (if you guys remember this) Kevin was able to somehow pull his feeding tube, head bandages and his trach out. Now Kevin was still barely out of his coma, so it took him some time to do all of these things - especially as he had no hand coordination. Sadly, when I went in to see him the night before, he was left unattended and was picking one of his grafts off. I mentioned it very nicely to the nurse that he needed to have his arm restrained a little better. She was very rude about it basically telling me she knew how to do her job. I saw all of this from the anteroom. So when I got in the room and walked up to his bed, the pad under him was COVERED in blood. He had scratched his back raw. This was all donor and graft site and the grafts did need to be redone.

I knew when I went home that night that something was going to happen to Kevin and sure enough it did. He was able to pull three very important things out of his body.

Well, I stewed about it all the next day, but back then I still didn't voice things too loudly. But I really was upset so while at dinner I called and complained to the charge nurse. It turns out that the nurse who neglected my son was the charge nurse. I still told her that I was upset even though I was shaking with fear at having to do it. But my son was at risk and I didn't want her near him again.

Well, it really got worse. The next morning, we apparently got a close friend of hers as our nurse. From the moment I walked into that anteroom she was on my butt. She started lecturing me about how I am nobody and they are trained nurses that know more than I ever will. She then went into Kevin's room and showed me how tight she could tie him and didn't allow us to untie him even while we visited. She worked either 8 or 12 hour shifts and never once untied him the whole time - and let me tell you, his arm was tight against the rail!! FOR THREE DAYS!!! (btw, this is against the law) She also threatened to evict me from the room because Kevin was agitated and it had to be my fault. I can't begin to tell you of the horrors that she did to us during that three days. These are a few of the major things, but it was all weekend long.

During that time - no one would listen to me. Everyone was friends and they all stuck together.

Lucky for me, Maritza knew what was going on and called a friend of hers that was a colonel. The colonel listened, talked to the first nurse (the charge nurse) and saw immediately what her attitude was like and then investigated the other nurse that did so many wrong things to Kevin because she was mad at me. That nurse did end up being fired.

So did I tell you guys about this? NO. Why? Because I don't like to complain. I try to always be upbeat no matter what life throws at me. But sometimes, when things just keep getting worse and worse - I vent.

So maybe the next time - instead of thinking "Wow! She's cracking up!" - think, hmmm...there must be something going on that she just isn't sharing with us. (although I will say that a good crack up could be good for me, lol)

Now because this post is so incredibly long already, I will explain some of what has been going on here at this hospital tomorrow night. I want to go home and see Moe and Mathew as they leave in the morning.

As for Kevin - his head is still very large. He is doing better because I believe he is adjusting to the pressure. But he is eating food anyway and drinking too. He's tough so hopefully he can keep going like this until his surgery happens in a week or so.