Getting some help..

This is obviously the week of blogging as I usually don't blog but once a week but this has been a busy and draining week for us. Today was especially notable though because it is the first day in quite awhile that I felt something good might happen to help us care for Sam. I met with a company about getting full time nursing care for Sam. YAY!!! I hate to have to bring someone into our home but I think I am reaching a point where I am spread far too thin and frankly emotionally and physically exhausted. I look in the mirror and don't recognize myself anymore..I look the way I feel for sure! I can't believe we have gone 8 months without getting this kind of care arranged before. As it is not yet approved by insurance I am not wanting to jinx us but I may soon actually be able to concentrate on one of a million things that have been set aside in doing all the daily tasks that independently seem not so bad but all together are rather overwhelming. Here are pics of some of Sam's equipment..just knowing how and when to use them require a set of skills I wish I did not need. It will be good to get a break from some of it if possible.

suction machine - sam does not cough or manage secretions well

mobile O2 Tank

O2 compressor - produces O2 out of the room air



Enteral feeding pump - pumps food through Sam's MicKey extension tube to his G Tube in his tummy



Nebulizer for breathing treatments



Heart - Lung (apnea/ bradycardia) moniter



humidifier

medical cart of medicine, syringes and all the "junk"

They are talking about a nurse who would come 7 am to 7 pm and take over with everything Sam needs. I would be able to leave the house if I needed to or work with the girls on their projects.. wow.. the thought of even having clarity of mind enough to sort bills and make those necessary calls regarding all sam's medical junk.. priceless. I might even be able to work in some capacity to make a dent in all the medical financials.

Sam is doing pretty well this morning with some periods of respiratory struggling. He is very distended in his abdomen with all his usual constipation and slow gastric emptying. But he was smiling and happy and more playful than he has been for days..so maybe he is getting a little better. It always amazes me how this bright and beautiful baby boy is able to smile even with the tubes and all his struggles. We just can't let him get sick because one illness is like a total crash of everything for him.

Bella has a half day and so I am going to put the girls to work on something constructive before they go stir crazy. I got busy with Sam and peeked in on the girls after lunch and they were playing puppet show with each other. At least they have great imaginations to keep them busy!

Just as I was posting the last picture and talking on the phone with one of our contacts at Early Steps (who provide his early intervention therapy sessions) about the nursing care info, I heard Sam's brady alarm and went running to find Sam was bradying again, clamped down and not breathing well..it has been a several time a day occurance while he has been sick. Finding your baby greyed out or blue and in distress even once is like some kind of nightmare but having it happen over and over is indescribable. My heart must be beating off the charts during these episodes and I feel a little like a crazed animal trying to get the O2 on him. I have so much adrenaline racing through me that once I get him stable on the oxygen and stimulated and then calmed down I feel like I could pass out. That is why we need a nurse here. I hate being alone during these scarey times. I have to tell myself that God would not give us or Sam this life without a master plan even if I can't see it clearly right now. I read this scripture recently and it really fit with what I keep trying to remember.

John 9:1-3 NIV
As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither, this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

I really want to find the answers to why Sam has to struggle, but if he has been given more health challenges than most, I have to believe it was so that others would see the work of God displayed in his life. Through him we witness God's love every day.