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