Tuesday, September 29, 2009
Saturday, September 19, 2009
Wednesday, September 16, 2009
Sunday, September 13, 2009
Thursday, September 10, 2009
Wednesday, September 9, 2009
Sunday Sept 20th we will be having ....
performing for us at
Ojai Valley Baptist Church.
11642 N Ventura Ave
Sunday, August 30, 2009
Wednesday, August 26, 2009
At the ER we learned that he had a collapsed right lung and more going on then we even knew. Micah was transported to Cottage Hospital in
Micah came home with a hospital room full of machines and tubes to support his everyday functions. Here are the machines and a brief description of each.
Suction: when ever it is needed, part of Micah's disease affects his ability to swallow and has to be watched closely because he could aspirate and cause more problems. The tip, tubes and canister need to be rinsed daily and disinfected weekly. The battery needs to be charged every couple of days.
Feeding: Micah had a feeding tube surgically placed in his abdomen and this is how he eats. During the surgery he also had part of his stomach wrapped around his esophagus so he cannot spit up and aspirate. Feedings are at 10am, 1pm, 4pm, and 7pm with a continuous feed throughout the night from 10pm to 7am. Before each feed I must flush the tube and this is also how I give his meds am and pm, and after the feed I must flush the tube. Feeding bags are changed daily and rinsed between feeds.
CPT: The vest machine, Cough Assist machine. Chest physiotherapy is done 2 times daily. We start with a nebulizer treatment of Xopenex, and then he gets suctioned. Next is the vest treatment, then he gets suctioned. Last are the cough assist treatment and more suctioning. There is an electric percussor and I have rubber manual percussor if the previous things do not get the job done. I also work on positioning with Micah sitting up and on his belly to loosen up the junk in his lungs and work it out.
Micah has a pulse-oximeter which tells us how well his lungs are oxygenating his blood and his heart rate, I usually only use at night of if he falls asleep off his Bi pap.
We have an oxygen concentrator, and oxygen. We haven't had to use the oxygen yet, knock on wood.
Micah is now a 14 month old happy boy. We have gotten a medical grade stroller to accommodate all of his machines so we can do outings. He laughs and smiles all the time. He talks with coos and grunts and he is learning to make choices with his eye movements. We still do physical therapy once a week to push his range of motion and work on new positions and strengthen what little muscle he has. Right now he does well off the Bi pap for about 3-4 hours but definitely needs the help. He does not lift or turn his head, move his legs or roll over, but he does move his feet and arms. He has lost a lot of strength in his swallow and tongue and lower jaw, and we have noticed he is loosing his smile on one side too.
Micah loves to be outside; he loves his brother and running around the house to chase him. Yes we chase brother and play hide and seek with him. Micah laughs so hard. He is getting used to sitting up a little more often now and he has just learned how to blow raspberries. It is hard for him. But our life is getting more normal, what ever that is, and enjoyable. It has been very hard to learn to live to enjoy the day at hand and not be upset and wonder when Micah is going to die, but if we focus on here and now life is manageable with lots of prayer. Micah is an amazing child and we are so blessed to have him. We know he is an angel put here by God for us to love and enjoy and take care of to the best of our ability.
Thank you all so very much for all your support and prayer and love. God is amazing and we have no idea how long he plans to let us keep Micah but we will do our best to enjoy every minute of it, good or bad, easy or difficult!!!