Looking For a Whole Lotta Prayer and Just a Little Bit of Sleep and Sanity!!!

As most of you know, Sam comes with a whole lotta labels but one of the most frightening is the respiratory/immune issues. Let me describe as I did to Sam's doctor's the last 48 hours.

Sam started his first illness of the season Monday night. He had a clear, runny nose, a little coughing, no fever…basically a common cold. He seemed to be handling it fine. Last night when he went to bed his breathing was clear, no indication of any issue besides some very minor congestion. His pillow wedge came in so I put that on his bed and I ran the vaporizer as we always do when Sam doesn’t feel well. At 1:30 in the morning I heard Sam cough once on the monitor and because I have spent 8 years listening to that boy breath I got up to check on him. Sam was sitting up and was already having issues breathing. I ran and got some ice water, called for my husband Jeff and grabbed some yogurt and his oral steroid. As I listened, I knew we were either going to be racing to the ER or calling an ambulance, he was progressing into respiratory distress that quickly. The stridor was loud and he was pulling in around his rib cage along with the look of panic in his eyes. I made a quick decision to attempt to get the oral steroid in him knowing that it’s effect is not immediate and worried that he might choke or aspirate into his lungs, but again I knew where we were headed without any action. I broke the steroid into pieces and got it in him with his yogurt and drinking a little water. He continued to get worse and asked to take a shower and because he was still talking I wasn’t running or calling yet. We ran a steamy shower hoping to buy some time for the steroid to work. He spent 15-20 minutes in the shower telling me to breathe while I prayed this was going to work. He must have felt better because he asked to come out of the shower and he said he was better. He still sounded rough, so we put his pajamas on and I sat with him in his room. By this time he was tired, his breathing began to go back to normal around 3:00 a.m. when he fell asleep. I slept with him for the rest of the night until I had to get up to get his brother and sister on the bus.

A couple of concerns, okay alot of them…this is the first time I had no prior change in his breathing before he went to bed to indicate a tough night coming otherwise I would have been sleeping with him all along or had administered the oral steroid. He now is in his room alone, since his brother moved to the basement so we have ordered a video monitor to be able to check on him easier but it had not come yet. Did I do the right thing? I hope so. I wish he would just grow out of this, it scares the crap out of me each and every time. Is it better to run to the hospital for the vaponephrine…I don’t think so because of his heart and exposure to who knows what else with his weak immune system.

I have had alot of people ask me about inhaled steroids to help keep his airway open. When Sam is on an inhaled steroid or any steroid for any length of time his behavior becomes manic and erratic, even at a low dose. Sam also has huge issues with yeast which is aggravated by the steroids as well as the fact that they weaken an already weak immune system. So we use a short dose of oral steroids during times of illness but only if his breathing becomes an issue. We had tried an inhaled steroid on a daily basis for preventative purposes and to keep his airway open but his behavior was off the wall. He was described accurately as the EverReady Bunny on crack. We are only one day into the steroid treatment, his breathing was good but congested today and I know breathing is important but let me describe what else we see. One day of steroids and we are on stim fest already. He has dangled everything he can find, shoes, clothes, a toy trailer, fuzz, socks, towels...you get the idea. He tore apart his sister’s bedroom looking for hangers to, of course, stim with. At one point during the day he was laying on his back staring at the ceiling, saying repetitiously “Hi Mommy, good to be home”…”Hi Mommy, good to be home”. Had to divert that segment or lose my mind. No….I don’t think the steroids affect him at all…God help us!!!! But, I know, breathing is important. After the steroids we'll deal with diarrhea, getting the behavior back in check, addressing the yeast build up and putting good bacteria back into his gut.

And to think...we are just starting the cold and flu season in Wisconsin. So I pray and I ask you to take just a moment of your time and send up a prayer for Sam because breathing is important!!! God bless each of you tonight!!