Strong Memorial, June 2012

Well, here we are...Rochester. Strong. PICU. I have a love/hate relationship with this place. On the one hand, I thank God that it's here for us when we need it. On the other hand, I hate that she needs it! Yet again. So, here's a rundown of what has happened since we got here.

Friday June 8, 2012- After a pediatrician visit, Dr. Leonard wanted us to head up here. Her neurosurgeon was on call, and they were expecting us in the ER. We got here, they got blood, started an IV (she was severely dehydrated, after only 2 days off of IV), and took her for a CT of the shunt. I am not allowed to go into CT with her right now, so I was waiting in the small playroom. Josiah had left his toy in her room, so I went back to find it. I walked in to a Dr. I didn't really recognize, getting a sterile procedure area set up. He told me he was with neurosurgery, that the CT showed her ventricles had enlarged, and as soon as she got back he needed to do a shunt tap. Talk about a blow!! She wasn't even back from CT yet. I signed the paperwork an went over to CT to wait for her. I was having a very hard time believing that she was in shunt failure. Neurologically, she was right on the money. They got her back to the room, and did the shunt tap. Thankfully, it tapped easily. The CSF was clear and completely uncloudy and the pressure was perfect. After breathing a huge sigh of relief on that end, we waited. I knew there was something wrong with her, and I knew it was bad, and I was scared that they were going to just send her home. However, she was badly dehydrated, so they admitted her for that. Up to 4-1600 we went.

Saturday June 9, 2012- I met the Rochester Dr. Leonard for the first time, and knew immediately we would get good care. This man listens. He didn't even touch her belly and she winced. He told me then he was calling in  pediatric general surgery. Her appendix looked fine, but the first thing he noticed was that her pain seemed to be RIGHT where the shunt tip was. Saturdays and Sunday's around here, not as much happens unless it becomes emergent. However, first thing Monday morning, we were going to do a CT of her abdomen with contrast.

Monday, June 11, 2012- CT day. I was told that she would have conscious sedation so that she could get the NG tube and get the contrast. We got down to the CT room, and the anesthesiologist came in. Next thing I knew, we were talking 2 hours of total sedation PLUS intubation. For a CT!!! I became very unpopular right at the moment, but I went ahead and told them I felt like I hadn't gotten the information right and didn't want to do it that way. We went back to her room, where I explained to the doctor that I wasn't comfortable with that much sedation for a CT. So, we did the NG tube with her awake. It was difficult, but she did fine...except it came out an they had to o it again. NO FUN. Thank God we did that CT though, because about an hour later the doctor came in and told me there was a large pocket of infection directly below where her shunt tip ends. Wow. That was scary, BUT it was an answer. Next step was two antibiotics- Flagyll and Cipro.

IV count-3.