Meeting Dr Choi at U of Iowa

My biggest fear when meeting with Dr Choi was that he wouldn't have enough information on Kevin to give us an informed decision, or that he wouldn't have the time to gather the information. Thank goodness I brought hard copies of Kevin's medical records. A nurse scanned copies and I had separated out some pertinent ones. She checked on us later, apologizing for leaving us waiting, and explained the Dr was looking over Kevin's records. I said she could take as long as she wanted.

Another nurse came to sit down and chat with Kevin and get his history from him. He began to tell his backstory and she asked, "Were you ever on 3West at St Lukes?" He said yes. "Was your first room number 316? I remember you!" Turns out that she works at St Lukes on the weekends and she remembered so much of Kevin's history and she was very helpful. I knew he had quite the reputation - it followed him to another hospital in another city!!

By the time Dr Choi came in he was familiar with Kevin and what a tough road he has traveled. The visit was all we had hoped. We still don't have all the answers, but we feel much better with the direction we are headed. Some items we discussed:

* Don't know where the fluid is coming from. We did another scan at U of I, results to be available on Thursday. We have been completely frustrated with the results of ALL scans we had at St Lukes. They all showed nothing. Ever. Three scans before Kevin's second surgery and none of them showed a bowel perforation. So. Preparing for the scan at U of I we were noticing some differences. Different contrast fluid. Different equipment. Different technique. We are so hopeful that this scan will reveal something.

* Dr Choi looked at Kevin's PICC line, his list of medications, and asked "Why are you on antibiotics?" After all, his white blood count is normal. We reviewed what we had been told, and he listed all the ways being on antibiotics too long can be problematic, as well has having a foreign body - the PICC line - in longer than necessary. And boy, are we tired of doing infusions every 8 hours. We've been doing that for about one month. Dr Choi completely hit the nail on the head when he said "They are treating your STORY and not treating you as a PATIENT." Smart observation. Yes, we know they are being overly cautious with Kevin but really don't want to be doing all this if we don't have to. We have an appointment with the Dr of infectious disease on Friday which could be...touchy. We are thinking we will keep the appointment and see what he says. If we like it, fine. If he says he wants us to be on antibiotics for another 2 weeks - we may have to say forget it.

* Kevin's pouch system that holds his fluid drainage was changed. The pouch has wicked glue holding it to Kevin's skin and it alone can cause him pain. Last week I called his nurse to come to the house because Kevin developed a wound underneath it - a pressure ulcer from the bag. The nurse changed bags and packed the wound, but Dr Choi eliminated the bag altogether and put a little bulb on the end of the drain with a safety pin at the top of it - so Kevin can pin it up under his shirt and hide it. A definite improvement.

* IF the drain doesn't stop we were not happy with our current surgeon's plan of action to stop Kevin from eating for 6 weeks and put him on TPN - all to hopefully heal the colon which he suspected might be the source of the fluid although he doesn't know that. Dr Choi again listed how problematic TPN is, with which we are all too familiar. He said he couldn't really say what he would do if the drain doesn't stop because he doesn't have complete data yet. Good enough for me. We can wait a few more days.

* One of the first things Dr Choi did was to look at Kevin's fluid drainage and put the tube in a vial to get a sample. FINALLY!!! Do you know how many times I was draining that stuff at home only to measure it, pour it down the drain, look at Kevin and say "Shouldn't someone else be looking at this??" Of course, now that we are at the Drs, we couldn't get any fluid to come out. Each of us, Dr, nurse, and I, took turns pushing on Kevin's belly, asking him to do crunches, move this way and that, to try and get fluid out. It was kind of funny. AND THEN when it did start coming out Dr Choi said "It looks like intestinal fluid." WHAT?? I cannot say what horrible things will happen if it is shown that this fluid is coming from Kevin's intestine.

The results from the CT scan will be done on Thursday. I will call the hospital then and pray there is some news. And continue praying that the fluid will stop. And thank heavens we found a good surgeon.