Well, we had a bit of an exciting night last night. On Friday, one of the lumens or ports on Lenah's picc iv line stopped working. So, whenever I needed to give Lenah a dose of medication, I would have to detach and re-attach her TPN fluid. Last night, a while after midnight, the other lumen stopped working as well. So we had to take Lenah to the ER in Nacogdoches to see if someone could get her line to work again.
Our triage person (I'm not sure of his actual title or designation) was extremely kind to us. I was afraid that once we arrived people would freak out at Lenah's appearance and vital signs. We arrived there about 2:45 in the morning and there were no other people in the ER. We were pleasantly surprised at this. We got back to the farmhouse a bit before 5am. I am so thankful that James had taken a long nap in the afternoon before this all happened. He was alert driving us there and back. I, on the other hand was brain numb from lack of sleep. Lenah woke up while we were there and showed her sweet little personality. They were able to get Lenah's line going again, but we will probably have to take Lenah back to Houston to TCH to have a new line put in. James called and spoke to one of Lenah's doctors and we were told that they would start the process Monday morning of trying to get her scheduled for a new picc line. Lenah must have a good long term line as she is not able to take anything by mouth because her digestive system does not work well due to low blood/oxygen supply. She has to have IV fluids/nutrition and medications all the time. Her line had been acting up before we left Houston and was re-worked on Monday.
Lord willing, James will probably drive back Wednesday night. Then,
he and I will drive Lenah to Houston early Thursday morning. Hopefully,
I will be comfortable with changing Lenah's IV fluids by then as we
will be gone all day and she will need her TPN replaced at some point
during the day.
She has been breathing well and her heart rate and oxygenation have been within her proper range. Today, though, she has seemed out of sorts and cries easily. She just seems like she is feeling unwell.
James headed back home this evening and Papa will drive to Houston in the morning. Please pray for us as the children have seemed restless and are acting out a bit. I'm sure they are feeling the stress of the situation as we are. They are all aware that Lenah is very ill and that she is dying. We have been given quite a few books and resources for explaining things to them and the hospice social worker has resources for us if we need them.