10 days

We are at the end of our tenth day at Texas Children’s. Eleven days ago we brought Campbell to the Emergency Room, thinking nothing was wrong other than a virus and a case of dehydration.

Campbell’s blood pressure has stopped responding to the medication for Liddle Syndrome. Over the past three days the doctors have increased the dosage about 400%, spread out the medication into two doses in order to insure she has the medication active in her system throughout the day, and yet her blood pressure has continued to remain erratic. Over the past few days it has been on the high side and has necessitated an additional blood pressure medication to lower it immediately. Today her blood pressure continues to rise, despite a small dose of an alternate blood pressure medication. While the doctors have not completely ruled out Liddle Syndrome, it seems they are definitely moving away from that as the diagnosis of choice, as she is just no longer responding to the medication.

Which kind of brings us back to square one, in a sense. The doctors are seeking to determine why Campbell has such extremely high blood pressure, rather than to just send her home on blood pressure medications without determining the cause. The initial blood pressure medications she was on, which stabilized her dangerously high pressure, are not medications that she could remain on long-term anyways. We are scheduled for the DMSA scan of the kidneys for tomorrow. This evening they started an IV that is needed for this nuclear test. We have high hopes that this test will show something that could be causing her high blood pressure. There are still a lot of lab results that have not come back yet, but we have been told that these labs (which were done on the first day in the PICU), could possibly shed some light on what is causing Campbell’s blood pressure. There is also an additional test of the kidneys that may be done Tuesday, depending on the results of the DMSA scan and labwork.

So basically we wait. While grateful for the things that we know are not wrong, I feel frustrated with not knowing, frustrated with the pokes, bruises, and bloodwork, frustrated that my sweet daughter has to go through this at all. And as much as I know God is trustworthy, I feel scared. Scared of a life for her that involves a blood pressure monitor every day. Scared of more hospital stays. Scared of answers not coming.

I do feel so grateful that Campbell has taken all this in stride. While there are moments that are definitely bad for her (who would like to be woken up at 5:00 am everyday with a blood draw?), she has been the sweetest, happiest girl for the most part. Sometimes I wonder if she thinks about home, her bed, her toys, and her cats, but she seems thrilled to spend her days surrounded by and attended to by all the people that she loves the most.

I know so many are praying. For that we are so grateful. Please continue to ask God to provide answers. Please pray for Russ and I, and our families, for endurance. I want to choose faith, to choose to believe in God’s power and purpose in this situation, however there are many moments in the last few days where that seems so hard.