Update 12/22/08

I wish I could tell you that today was smooth and Katie is home but, those would both be untrue.

ChildLife did come by yesterday (Sunday) to talk to Katie about the PICC placement process, and by the time she left we had lots of ways to reach someone to go down with us today. Even so when our daytime nurse stopped by this morning I mentioned it to her and she already knew and it was all lined up. She came by a bit later and said we would be going down at 10:30 and that Marisa from ChildLife had already been told. At 10:30 the sedation nurses from IR came up and put EMLA (numbing cream) on Katie's arm and said she didn't need to come down until 10:45 which worked out well as the team was just about to "round."

The whole team came in with a new peds attending that we hadn't met before. A resident gave report on Katie and when she got to intake and output and the numbers were off so the attending started asking the resident questions. Here's where it got fun for me. The attending asked what Katie's underlying kidney disease had been originally. The resident said "unilateral kidney agenesis" and I must have made a face that reflected my thought which was "that doesn't answer the question." The attending agreed, told the resident that, and then said "even Mom is giggling behind you." I wish I could have laughed out loud the way I wanted to. The resident got drilled a little more and then the attending asked me to answer her questions. A bit further in the conversation they were talking about increasing Katie's fluids and I mentioned that that concerns me because of her bladder being man-made. Later in the afternoon the attending came by again and mentioned how astute I was to bring that up because that was indeed one of Dr. M's concerns about increasing Katie's fluids also.

And thus ended the bright spots of the day.

We went downstairs to IR, Katie's face was full of fear when she had to leave us but we did our best to put on brave faces. We had been told the procedure would take an hour including sedation and prep and dressings and such. She went in at 11 so at 12 I started to panic. Steve made me wait until 12:15 before we said anything. We asked at the desk and the girl dialed the phone asked about Katie and hung up and said "she's still in the procedure." I said "but you didn't ask if there was a problem or complication or another reason they were going long." She spouted possible reasons they could have taken longer than expected. I said "well those are theories and not the actual reason that *my* child's procedure isn't over yet." She tried to direct us down to the IR area (that was a general radiology area I think) but we couldn't follow her directions, luckily someone saw us and asked if we needed help. She knew that they were just finishing up with Katie so we were right there when they wheeled her out of the procedure room. She was crying but quickly stopped when we got to her and into the recovery area.

We didn't stay there long and went back upstairs to her room. Dr. M just about followed us in. She told us how she wanted Katie to have another ultrasound while we were still there and that plans were underway for home health so that we could go home. Shortly after she left our nurse had gotten a call from ultrasound that they wanted us to come down. Molly from ChildLife was our transporter which was nice. Unfortunately the meds Katie had gotten during the the PICC placement started to wear off and her arm started to get sore and she resumed her complaints about her peripheral IV (it was still in place and that hand was pretty swollen and bruised.) It was probably inevitable, it was manipulated quite a bit, and she had lidocaine injections and two stitches. She got mighty cranky and really frustrated. Of course we had to wait and wait and wait down in ultrasound. The actual treatment room down there was cold so she was upset about that, and she was just crying about wanting to go home.

We no sooner arrived back in her room than a resident came in to tell us we weren't going to get to go home until tomorrow (Tuesday afternoon.) It seems (although I came to this realization after much frustration of asking lots of people and getting no answers) that Dr. M decided that since we were scheduled to have the Cytogam infusion tomorrow that it would be just as easy to keep us inpatient overnight and give her the Cytogam as an inpatient and send her home after it. In the middle of me trying to get answers about that, the home health coordinator came by saying that she had things lined up for a visit tomorrow morning, well or course tht wouldn't work but at this time it was 4:40 the place closes at 5 and she wasn't sure she coudl get it changed to tomorrow evening. She she went to make that call and thankfully was able to get everything rescheduled.

I wish I was conveying every frustration or irritation of the day but please know I'm leaving things out because it's just impossible to put it all in.

Katie wasn't happy that I left this evening but Steve was insistent. I wanted to keep James out of school tomorrow and take him to the hospital with me but he has a presentation in one of his classes.

Hopefully I can post tomorrow that we're home.