Waiting For My Real Life

Dreams of walking on a beach,
Barefoot in the sand.
Sounds of sea gulls and waves rolling to the shore.
The smell of salty sea air.
Dark clouds follow in eerie silence.
Trying to stay a step ahead.
Remembering when walking was such a simple thing.

Nick continues to make a slow recovery from his latest surgery. His numbers are better, with his counts returning to normal levels. Nick has been without a fever for many days now...a good sign that the anti-fungals and antibiotics are doing their job. Wednesday should bring us news of the drug sensitivities for the fungus. Nick has not been feeling real great for the past four days or so. He keeps telling us he feels so tired and does not have any energy. He spends much of his time sleeping and trying not to have a "breathing fit," which can be brought on by anything and nothing. The breathing fits can be mild or quite severe, there is no predicting which it will be. His latest was last night when he became nauseous and then threw up some nasty brownish stuff from his belly. The tube feedings were stopped. Nick has been complaining about belly pain for approx. three days or so. The doctors had switched his stomach medicine, so I told them I wanted them to start Nick back on Protonix.

Nick's lung continue to be a problem, despite improvements in the CT scan post surgery. Why Nick continues with the breathing spells is hard to say. Is this just a continuation of his original lung problem or is he still fighting the fungus and the bacterial infections? Nick remains on the ventilator via his tracheostomy tube and it is yet unknown when he will tolerate weaning of the vent settings.

Nick's left arm has been extremely swollen. After bringing this to the attention of doctors, they wanted to attribute this to the dependent edema he has been experiencing in all of his extremities. They did get an ultrasound of his arm and neck anyway and it was discovered that Nick has a clot in one of his arm veins on that side and that is why his hand and arm are so swollen. The clot does not completely block the artery so for now the plan is to monitor, use warm compresses and elevate.

Nick's poor body is just covered with bruises and an assortment of wounds. Some are healing and some are not. He still has his PICC line in his right arm and an arterial line in his left arm.
He hasn't been able to tolerate his tube feedings. Nick threw up yesterday and then he had a breathing fit that was quite difficult to break. After getting some sedation medicine, Nick was able to calm down and go to sleep. I was very worried about Nick and I did not want him to be alone, so Glenn came down to spend the night and I went home around 1:30AM. We are both very tired and I need to go to bed now. The main thing that has helped is having some really wonderful nurses taking care of Nick on a somewhat consistent basis of late. Having someone who know Nick and cares about him make all the difference in the world. This gives me great comfort when I have to go home and leave my beautiful son in the care of others. I pray for God to guide their hands and their hearts and give Nick comfort through the night. I hope this is not to disjointed, if so, I apologize in advance for I am too tired to redo. Goodnight all.