The doctors have decided that any other testing they are monitoring can be done outpatient. Jacob has held steady at 30% coverage for his CGD while off immunosuppressants, so we will just watch to see if he needs a boost of donor cells or not. His doctors are happy with 30%, so we hope and pray that he holds onto that. He will have a lot of restrictions once he's home, like following a special diet, not having children visit, avoiding the sun, not being in public places. We basically have to avoid germs and conditions which could flare up his graft versus host. We are excited to have him home, but nervous about the extensive care he requires. He is coming home with a double lumen central line which needs to be cleaned and flushed daily. We also have to change the dressing at least weekly. He's coming home with his NG tube and a pump to run his formula, so we will have to learn how to set all of that up. Not to mention his myriad of medications to keep track of: antifungal, antibiotics, antiviral, appetite increaser, folic acid, etc. This is an exciting, yet a little scary, time, as I become his full time nurse.
1 comment:
No sweat! As I have read your blog over the past several months I have been so impressed by how well you have understood everything that is happening to your son, and it appears that you have taken it all in stride. Now I am sure there are up days and down days, but what you need to hear is YOU CAN DO THIS. It won't be easy and you will hit a snag or two but I believe in you!!!
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