Five Steps Forward and Ten Steps Back

Apparently February has decided that it will not be outdone by either December or January. Luckily it is more than happy to change things up a bit and keep everything interesting. If you recall my last blog post was full of roses and sunshine. Today we will talk about a few weeds. 

Saturday evening on the tail end of Friday's good news, hopeful outlook and an obnoxiously positive facebook status about David being seizure free for a week and moving back to his own room the next day....weeds started sprouting up all over my proverbial flower garden. They came in the form of a wiggling David who couldn't seem to get comfortable and wasn't straightening out his legs. I immediately checked his incisions. They were still beautiful. There was no redness, heat or swelling. Next I tried to check his legs but he refused to allow me to touch them. I looked the best I could to see if there was any swelling or redness in his legs in general and there was not. However, there was obviously pain. Pain so bad that he was screaming loud enough I was afraid passerby's on the street could hear.....and there were tears. Lots of tears. Those of you who know David personally know that there are never tears and screaming where pain is concerned. There maybe hair pulling, pinching and trying to bite.....but seldom tears.

I frantically tried to figure out where this pain was coming from. I ask him where he hurt and to my amazement he pointed to a spot just about his right knee. He was holding that spot so tightly that it was leaving finger marks. There was no swelling or redness though so I was not absolutely sure this was actually where his pain was. He was trying hard also to sit straight up which he did a lot of after his first surgery as this apparently helped to stretch his hip muscles. Because of all of this, I was beginning to wonder if during our time out on Friday that possibly he had twisted or turned something in his hip causing a muscle issue. At any rate for lack of a better solution and because I needed to be able to change and move him, I put his spika removable brace back on him. This itself was no easy task but once on he seemed to be more comfortable.

With his legs stabilized and him resting a little more comfortably, I was pretty sure we were dealing with muscle pain but neither of us were to shut an eye all night as he continued to squirm, moan and oh....did I mention he was having stomach issues that required multiple changes and multiple spika brace lifts? It was a long night.

Yesterday David smiled little and remained somewhat uncomfortable. I checked his legs regularly and he did manage to cat nap a few times so I thought that it likely was just muscle pain. By early evening though.....the squirming became worse and the tears began again. Even with his hips stabilized he was still in obvious pain and it was getting worse. He was beginning to get pale and with each tear I became more concerned. Finally I decided that a call into his pediatrician and the doctor on call might be necessary. I fully expected to hear him say keep it stabilized and bring him in tomorrow. Instead I was told to get him to the ER and have EMS take him. The doctor was concerned about infection or an issue with his hip hardware. He did not want to wait until tomorrow or risk transporting him myself.....especially when David was in so much pain. So I called EMS and once again they were there within minutes and they transported my little guy to the ER.

Once at the ER.....David was out of patience and everything made him fighting mad. He was not about to suffer us fools for one more second. First there were x-rays, followed by IV's another stick for blood work and doctors and nurses touching and trying to move his legs. The first x-ray brought to light for me that during his surgery the doctor had broken both his hips to then put plates and screws in. I had no idea that this is what the surgery entailed. It made sense but still that really got me. A double break!!!  Perhaps because I was already exhausted and on the verge of an emotional break down anyway, but news of this double break nearly had me in tears. At any rate a break was ruled out and the next concern was then infection. His white blood cells were slightly elevated but they felt this went more with the pain and not with infection. The ER doc then came in to tell me that they were going to do a hip CT...... at which point I began throwing a bit of a fit. After having two head CT's in January and having the hospitalist tell me not to let him have any more CT's unless an emergency (at least not for awhile), I was not liking the news of this new test. It was lucky the ER doc was both kind and cute. He said he understood my concern but since MRI's are out due to Davids large amount of bionic man hardware, the CT was the only way they could get a good picture of the hip and get to the bottom of what was going on. Luckily for us all, his smile and my exhaustion trumped my tantrum. David would be getting a CT. We had to stop his pain!

It seems that the cute doctor took my concerns seriously and as the nurse pulled Davids bed out of the ER room and down the hall towards CT, the doctor jumped in front of the bed and said....."Take him back!" He then pulled me over to where an xray of Davids leg was hanging. He then showed me his hip which other than having a huge plate and screws in it.....looked fine. However....down towards the knee but almost cut out of the picture (they were only x-raying the hip after all) looked to be a sliver of bone that was not connected to the rest. The doc said that before he sent David to CT he wanted to take another x-ray, this one closer to the knee. I was all for that. Within 20 minutes his suspicions were confirmed. Bad news? David had a break just above his right knee. The exact spot he was grabbing and pointing out to me the night before. Good news? No CT was necessary. We take our wins when and where we can.

I immediately felt tears again. How did we go from perfectly straight, no pain and ready for physical therapy to a broken leg in less than 48 hours? Then I began wondering what this meant for the here and now as well as the near future. Well....here and now meant a stay at Casa Wesley, surgery to repair his break and a cast. As for the near future....no PT which means his chances of walking by June are drastically reduced. This SUCKS!!!!! I am trying desperately to remember though that nothing happens without purpose and that there is a reason for this. For the life of me though, I am having trouble figuring it out. It seems like once again we move forward 5 steps....just to be knocked back 10. However, I am reminding myself that David did not have to have a CT, he is not having seizures, he is not sick, does not have a life threatening disease and as issues go.....a broken leg is both fixable and fairly small in the big scheme of things. This will all likely mean more to me once I actually get some sleep.

This morning we wait to find out when surgery is. So many questions and thoughts are running through my head. How did this happen? Did I do this moving him or did he do this to himself pulling on his own legs? Are his bones that brittle or is this common with surgeries like David had?  The questions just keep on invading my brain and so far there are no answers. David can neither eat nor drink and with the pain....he is not in a great mood. Spongebob isn't even making him happy. It is expected though that surgery will be this afternoon. They don't think that they will actually have to cut into him but they will have to manipulate and maneuver the leg to put it into place (under sedation) and then cast it. Maybe we will be released tonight but my bet is that we will get to invoke our guest status here at least one more night. Hopefully though, however this plays out, there will be relief for David, answers for me and at least a couple of hours sleep for both of us by days end.