Yesterday....I Forgot to Breathe

I am constantly amazed at how much life can change in a 24 hour period. You can go from completely happy to completely sad, from holding a grudge to forgiving, life to death and in my case go from feeling like the sky was falling to feeling like things are going to be okay. To be truly honest....I did not reach this destination without the help of two very kind individuals who talked me off my self imposed ledge and gave me back some peace of mind last night. I told them both my thoughts and fears on the whole situation. Mainly my fear is that after all this pain and suffering David has gone through that because I got no real training with him....that I don't have the first clue of what I am doing and therefore I could cause him more damage or at the very least unnecessary pain. I have no idea what I am looking at when I see his hips and legs. To me they look like they are healing okay but I really don't know for sure. The thought of him having to go through another surgery to fix something that I might inadvertently have caused was eating me up inside.

The first individual actually came and looked at David. After a once over and some gentle physical therapy, my mind was eased that we were on the right path. Apparently everything looked really good and I found that we didn't have to constantly keep his legs elevated and that we were fine to go without the stabilizer permanently and the splints could be used only at night. That was a relief. The only somewhat bothersome finding was David's left foot that seems to just lay to the side. He obviously has feeling in it and the doctor originally told me that this would take care of itself. However it is believed that the foot should continue to be watched. The really great thing is that even without his feet elevated...they still look pretty pink and the circulation seems to be much better. Thank God!

The second individual talked to me by phone. This person gave me hope for future medical help this summer and with somewhat of a medical background they gave me peace of mind about my parenting skills being just as important as any medical skills and assured me that I was likely doing things right. Both individuals made me feel better and also made me realize that sometimes a mother can be as beneficial as a doctor....especially when she knows her child well. Thank you both if you are reading this.

Today is also a better day as David appears to feel much better. Maybe it was the putting him on his stomach yesterday. He was crying so much and appeared to be in so much pain that I called Shriners. They asked me if I had been putting him on his stomach to help stretch his muscles. It struck me that maybe someone had said that to me at the hospital. I said no and they told me to start. It was literally HELL! You could tell that laying on his stomach was stretching him and hurting him. Before surgery he was no fan of his stomach and now it was pure torture. Even through all the crying though...I managed to get two "tummy times" in for about 15 minutes each. Perhaps that is why he is feeling better today or maybe yesterday was just a bad day for him which translated into being a bad day for me. Whatever the case....this morning he is happy and the diaper and bed change only took about 3 minutes. That is definitely a record for us.

For anyone thinking of taking their child to Shriners and having surgery done....don't let our experience scare you off. Ours was not the norm by any stretch of the imagination and honestly....if I had it to do all over again....if it meant he could be more mobile and independent....I would do it in a heartbeat! The reason I am so flying by the seat of my pants right now is because when we were at Shriners...we were about to go through the physical therapy and the therapist was going to show me everything I needed to know to work with David during his recovery. It was at that point that he got so ill and had to be transferred to St. Louis Children's. Once out of PICU they did put us on the Ortho floor but because his surgery was done at Shriners, other than take care of his health...they did little else. One day a PT came in and asked me if I could lift David from his bed to his wheelchair. I told her that I thought I could. She asked me to show her and after I did she left the room never to be seen again. I asked the nurse where she went and upon looking at the charting notes it said that since "mother can lift child to wheelchair"......her work was basically done. So the extent of training I got on David was the 15 minutes the PT at Shriners saw him before he got so sick. Most cases are not like that and the parent is sent home with a great deal of information on what to do. I just missed out.

At any rate....today I have had sleep. I am working through my insurance issues and my home health care situation and David is feeling much better. To top it off I actually have volunteers who are willing to start coming in so I can do errands like taking my dog to the vet, picking up Rx and paying my van payment. It is also looking like next week I will be back in the saddle again baking cheesecakes. Things are much better today. What I am learning is that in most cases when things look bad....if you just stop and breathe...things always look better. Yesterday I just forgot to breathe!