Another update

I'm sorry to go so long between updates, we couldn't get the internet to work in her room anymore and the computers in the Ronald McDonalds house room were busy most of the time.

Sunday 12/21/08
Last night (Saturday night 12/20), sometime before 3 Katie's IV pump beeped with a message of "infusion complete." This usually means that the nurse didn't keep track of her pumps and how much time they had left so that she could get in and reset it without waking her patient. So when it beeped again around 3 I was annoyed, I didn't even look at what it said I just pushed the nurse call button (which we almost never do.) Well it said "patient side occluded." Sometimes that just means she needs to kind of shake out her hand or straighten it and then the pump needs reset. This time... not so much... the part that goes inside of her vein had backed out and was in the shape of a Z, so it was ruined. So I got up to start negotiating on Katie's behalf to not restick her right then in the middle of the night. I figured since her next abx dose was due at 5am and her Prograf level blood draw was due at 6:45 that we make the abx a little late and just do one stuck and wait until 6:45 to do it, particularly since her fluids were due to be discontinued today anyway. I had to argue a bit ut we got there.

Two residents showed up at 7:15 (grrr) and missed the first stick all together. So I agreed to let them just do a regular blood draw so that her Prograf level wouldn't be any later than it already was and we would regroup. The resident doing the sticking was clearly "done" because after the blood draw stick (which was thisclose to going badly) she said "well I'm off duty now so another resident will be back to try again later." Oh, nice, sorry to have bothered you. One of the nurses on the floor had been following along with us and had help me convince them about delaying the orginal restick, and she asked to try to put another IV in, and I let her... that one "blew." When you place in IV you check it by using a syringe of normal saline to "flush" the line, if it flushes and flushes easily then you have a good IV. If it's hard to flush it's a bad IV, or you see a bump form under the skin as you flush it's "blown" and the fluid is now collecting under the skin instead of going through the vein. At this point we had a freshly lost IV site in the left hand, a failed IV placement attempt in the right arm inside the elbow, a fresh blood draw site in the left arm inside the elbow and a freshly blown IV site in the left hand (yes that's two in the left hand because we're trying to keep her able to do crafts.) So we asked for a PICU nurse as usually they’re more skilled and experienced at placing IVs in kids and babies. Later, at close to 9, a very nice, experienced, skilled PICU nurse came over. Getting another IV placed was really hard on Katie because that left hand is so sore, and she cried and cried, but we got it in and if flushed beautifully. We had a small snafu with it not being tightened together strongly enough but we held it together, cut away some of the tape and retaped it.

And that’s where we are. Her antibiotics schedule is now 9am and 9pm which is actually a good time schedule to go home with and it makes it more likely that we can get sprung tomorrow afternoon since the next dose won’t be due until 9pm.

Childlife is supposed to come by any time now to talk to Katie about the PICC placement process. I hope I won’t have any more updates for you until tomorrow afternoon.

Wednesday 12/24:
Let me bring up to date from where I left off above...

Lisa from Childlife did come by to talk to Katie about the PICC placement. Sunday night was uneventful thankfully. Katie's left hand was very sore from all of the sticks, her original IV was there, then the blown IV attempt was there, and the replacement IV was there also.

Monday came around and we were told we would go down for the PICC at 10:30, and our nurse already knew that we needed childlife and had notified them of the time. At 10:15 Marisa from childlife came to our room. At 10:20 the sedation nurses came in to put EMLA (numbing cream) on Katie's arm to help with her not feeling the lidocaine sticks. At 10:25 the doctor team arrived. I told them we were due to leave shortly but they came in anyway. I had a rather fun moment with them though. They had a new (new to us not a new doctor) pediatric attending with them. The resident assigned to Katie was doing her report and when she read Katie's input and output from the day before it was "off" saying that she had peed more than 2 liters more than she had drunk (drank?) So the attending stopped her and was asking questions, among them was "what was her underlying original kidney disease." The resident said something like "unilateral kidney agenesis" which firstly doesn't answer the questions and secondly is odd phrasing. The attending looked at her and looked at me (I was behind the resident) and said "even Mom is behind you giggling." I was hysterical inside! I helped them along with some info but then I kind of cut them off saying that I was concerned we would lose our spot downstairs for the PICC placement.

When we got downstairs and Marisa walked off with Katie... that was tough! She left us at almost exactly 11am. Since the sedation nurses had told us that the entire procedure from prep to clean up takes 1 hour so when the clock struck 12 noon I started to panic. I asked Steve how long I had to wait before I could officially worry and he said 15 minutes. During that 15 minutes I was of course imagining the worst. (I don't think I mentioned on here about the "code" that took place in the ER when we were there. A code is short for code blue when someone's heart has stopped beating and an entire team of people responds to try to revive the person. The event in the ER had the worst possible outcome.) I was pacing the hallways down near IR asking Steve if they always announced throughout the hospital when there is a code as they had done in the ER that day (and I'd heard another one announced since then too.) At 12:15 I went to the desk in the waiting area to ask for a status. The girl called someone and quickly hung up the phone saying that Katie was still in the procedure, but that wasn't good enough for me I wanted to know what the delay was, she gave me possible reasons but those were just possibilities that could happen I wanted to know what the delay was with MY child. She sent us down to the IR office but the doors to go in there were locked so we paced for a few more minutes and someone saw us and asked if they could help. She knew that they were just getting ready to bring her out of the procedure room so we waited. She was crying when she came out but she stopped quickly when she saw us. We hung out in the little recovery room for a bit then went back to her room. She was in pretty good spirits and happy that nothing had hurt during or after the procedure. Later it got pretty sore and still itches her quite a bit at times.

Not long after we got back from there we were told that we weren't going home that day. Dr. M had decided since we were due for her next cytogam infusion on tuesday that we should just stay and have that done as an inpatient and then head home. I was concerned about the floor having the right tools to do the cytogam, and I was concerned that the nurses would have time to do what needed to be done. The cytogam has to be filtered and run in particular tubing, and it gets run at 3 different rates changing every half hour, and vitals have to be taken every half hour. The attending told us how all of those things would be handled, and oh how I wished she was right... but she wasn't. It eventually all got worked out but of course there was stress involved for me. We had also asked the attending to please be sure our discharge papers were ready by the time we were done, and they were but not without some additional prodding from us and and our nurse.

In the end we left the hospital around 12:30. When we got in the car we called up to the middle school and told them we needed to pick James up early. We swung by there on our way home and all four of us got home around 1:30 or so.

The nurse came by that evening to teach us how to administer the meds at home. It was pretty invasive with lots of questions but we got through it.

This afternoon we went to our home church for 2 Christmas Eve services, the first family service with candlelight and communion, and then the children's service that Steve usually plays guitar for. Now we're home enjoying some quiet family time.

Thanks again for everyone's thoughts and prayers.