UPPING AGAIN

We said good-bye to Issy today. The effort he made goes above and beyond. He brought us all great joy and a little relief from the stress we have all been experiencing. Words cannot express our deep appreciation. He is a wonderful person.

The tubing that goes from Philips central vein to the medication pump got caught in a chair Philip was sitting in late this afternoon. Both Shelly and I ran to him knowing that we would either have to get it unhooked or have to close down the pump and get another started very quickly as Philip cannot be without the medication for more then a few minutes. Shelly got there first and was able to unwind the tubing so it wasn’t a real emergency. However, it was practice run. Philip now carries an emergency kit that has all of the medication and equipment we need to if anything goes sour. Accredo (the distributor or the medication and equipment has a 24/7 hot line. I have memorized the number and am grateful for all of the services they provide. Philip stayed calm even though there was a concerned look on his face. Who could blame him.

The physicians decided it was time to up the medication again. The Accredo pharmacist and nurse both called to make sure I knew what to do. I changed the amount this evening and now we wait to see if there is going to be a reaction.