winter update

last thursday n got a mini-surgery to get a port-o-catheter inserted into his chest so he can get IV nutrition since his weight has dropped so low once again. the docs and we don't know what else to try to help him get stronger in order to keep getting treatments to fight the pernicious lyme and other autoimmune/liver problems. n has a high risk of developing clots so we hadn't wanted to get a high risk line put in him unless there were no other choices. so here we are. the IV runs over 6 hours on a pump that fits into a backpack.

the surgery was nervewracking and more intense that i expected. the port is under his skin and they told us a needle would need to be inserted (by me!) into the port each time he gets hooked up to the IV. my knees got weak when they told me this. what i had done before (4 years ago when he had this same treatment) was connecting tubes that come out of his skin and using screwtop syringes and tubing with a very sanitary and precise method. the nurse trains you and then you're on your own. that was enough stress to keep me awake at nights. fortunately this nurse assured us that they would be putting a needle in that would stay all week and we just hook him up to the tubing, keep the line clean and patent, program the pump etc, etc. that's what's happening and it's going.... okay. it's a hard adjustment and n feels crummy today taking in so much liquid. they are going to make changes so he isn't so nauseated.

holding down the fort. this weekend i went to my office and abducted all of my unused plastic drawers and teaching tubs, washed them out, made labels and set up a nicely organized medical station in our bedroom for the ease of nurses, parents and myself. i am in awe that all this is going on. it's overwhelming, but full of the grace of Jesus. amazing grace. n is such a MAN.

today was a snow day so i got to stay home. actually i worked a lot here since i missed 2 days last week to help n. we have an excellent nurse who comes once a week to change the dressing, draw labs and check on us. a couple boxloads of medical supplies (including the IV formulas) arrive from coram healthcare weekly via courier. we get vitamin IVs from the doc and do those once a week. it's an intense regime.

commander of the fort and pack leader-- our hero, johnny d. no one knows how much he does for us and others; we are eternally grateful for his unending, humble service to us and to so many. he is amazing (and so is his woman, the great cho who keeps us smiling everyday) his reward in heaven will be GREAT!!!

speaking of our pack we are expecting a new addition this weekend. something special is coming our way at a time that may seem crazy, but we are ready for this most blessed distraction. most importantly n is excited. stay tuned. i will need your input.