My Family

My Family
3 kids with CF

Thursday, March 10, 2011

Ranting and Raving

This is probably going to be my longest blog post to date and I am probably going to rant and rave like a lunatic but sometimes you have to, right? Michael is still in the hospital after a month and two days. We had a meeting with the doctors today and found out that his liver is enlarged. They have done an ultrasound of it and found nothing wrong so they are just going to keep an eye on things for now. They don't believe that he has developed CF related liver disease and feel that it is due to his rapid increase in weight. They are going to be doing an echo on his heart before he is discharged because of all the drops in his saturation. They want to make sure that he hasn't developed "Cor Pulmonale" or pulmonary hypertension due to his heart having to work so hard to pump blood to his damaged lungs. His X-rays look worse this time than they did last time and there is no doubt of a double lung transplant in his near future. That being said, we need to work on his nutrition and get him to gain weight on a steady basis before they will send us for consultation with a transplant team. We want to have as many factors in our favor that we possibly can before we go down that road. He will also be coming home on oxygen (he has been on oxygen at night, but now they want him to have it when he is out playing) I am just disheartened by it all. I hate watching him slowly decline over time and I want so badly to just scream, cry, beg God to make him better, but most of all, I just want to take his place and suffer through this for him. I feel so desperate to be doing something more for him. I ache with the need to make things better for him. I don't even know how to put how I am feeling into words because I have never felt this way before... I guess it is just sheer desperation because I just can't lose him.

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