We have a plan! I am so over the moon excited to have a plan to get Josh healthier and stable! It took quite some time to get to this point with LOTS of waiting and wondering if I was ever going to get the doctors to figure something out.
So that being said..... here is our plan:
Monday at 2pm Josh will be admitted at Primary Children's to have a Central line placed (or PICC line if that makes more sense). He will be starting TPN (Total Parenteral Nutrition) or IV nutrition. This will do a few things for him. First of all, it will help him get the nutrients he needs and has been needing for so long now. It will also let us do some 'gut rest' to buy us some time. While he is on TPN, his GI doctor is going to call Boston and Cincinnati Children's hospital and get a consult on Josh. We will also be doing his spinal tap on Dec. 14th to see if we can find some answers from a neurological standpoint. Our hope is that with some gut rest, and getting more tests done... we might be able to avoid a colostomy all together and maybe figure out something else to avoid surgery. We have never done 'gut rest' so this may just be something his colon needs right now. I am being hopefully optimistic that this IS going to work. I don't want to do a colostomy. I don't. I really don't.
So here is to hoping! I will update after he is discharged and I get everything set up with Home Health Care.
Biopsy and Fun
3 days ago