Campbell Update 10-22-09

On Tuesday morning we were moved from the PICU to the 12th floor, the Renal (kidney) floor of TCH. While I was very relieved to leave the PICU behind and glad for the progress Campbell was making, leaving the security of the constant monitoring was a little scary.

Campbell got to be totally unhooked when we got up here and has enjoyed her freedom. It took her a day or so to get her “sea legs” back, but she is regaining muscle strength and coordination and has been walking around, reading books, going for rides in the wagon, and enjoys the loads of attention she has been getting! Her appetite continues to improve and she is slowly putting on some weight, which makes us all happy. Girl had gotten kind of scrawny!

Yesterday they did a VCUG, a test to determine whether reflux was occurring in the kidneys. The test came back totally normal. This means no urine is going back up into the kidneys. This is GREAT news! We are still waiting on lots of lab results to come back. Most of these labs were performed last Friday and Saturday. Because many of them were fairly obscure and unusual in nature, it takes more time to receive the results. Her blood pressure continues to be erratic and went up higher yesterday afternoon. The doctors increased the dosage of her medication and her pressure became more stable after that. I asked if they were concerned about the increase in pressure and they indicated that the fact that her body responds to this medication means they are on the right track with the diagnosis of Liddle Syndrome. They want her to have stable blood pressures at no higher than 120/80 for several days before we go home.

The doctors have tentatively indicated that we are looking at early to mid week next week before we will be able to go home, but are pretty clear that is speculation. She will have another test on Monday, a DMSA scan of the kidneys. This test looks at damage to kidneys that might have previously occurred and at kidney function. This morning our insurance approved payment for the hospital grade pediatric blood pressure monitor the doctor requested for us to have at home to monitor her blood pressure. This is a huge thank the Lord, as this equipment costs multiple thousands of dollars!

And now, on that note, I must sing the praises of some incredible people. From our families who have been here constantly, literally making sure someone was here all the time while Campbell was in the PICU, making sure Russ and I ate, had clothes, got showers and sleep. To our neighbors doing our laundry, bringing us stuff we need from home, taking care of our cats. To our church family cleaning our house (that is sacrifice!), mowing our lawn, and bringing us food. To my co-workers and Russ’s co-workers stepping in to take on aspects of our jobs (or in my case, my whole job!) so that we do not have to worry about work. Truly we have never been served like this before. Russ and I are unable to express the gratitude we feel towards those who have given of themselves to love us and take care of us over this past week. These people have been Jesus to me this week, and I feel blessed to know and be loved by the people in my life. Thank you again for your prayers.

We would ask that you continue to pray for Campbell, and for us, as we walk this road.