The smallest chores are major risks for Alex right now. Since last Tuesday we have stressed over moving rooms, "brushing" teeth with a sponge, moving beds, readjusting in the bed and now moving to have her MRV. This was a huge task today. The MRV was scheduled for 9:00 and then delayed to 3:00. They began preparing for the move around 11:00. We could only take one IV pump down so they had to determine how to consolidate all of her meds. You can't travel with the ventilator so they had to have someone bag her the entire way down. They also had to move her from her bed she is on to the MRV table. The final concern was would she fit in the machine. They busted out the tape measures to make sure.
They finally came to move her. It took 20 minutes to get her gathered, 30 minutes to move from the bed to the table, 30 minutes for the actual test, and 30 minutes to transport back. When she arrived back in her room, her body was in total stress from the move. Her oxygen levels were critically low and her blood pressure was suffering. With enough meds and patience, these levels have stabilized.
As far as the results, we are not absolutely clear what they found but the night doctor mentioned some juicy veins in her groin area. Due to her skin breakdown in this area, we cannot access this directly but it is possible to access it as it branches down into her leg. They will discuss further in the morning. We would like to wait as long as possible to put in another PIC. Due to her reaction to the move today, we do not feel that her body is strong enough to have another move tomorrow AND an invasive procedure.
The plan is to dialysize at 6:00 tomorrow morning and start a regular IV for emergency meds during the procedure. Regular IVs last about 24 hours on her so we will cross our fingers. We still need PIC access for her high flow meds and TPN (protein substance) but hopefully we can make it another day without it.
We always knew Alex didn't make things easy. She's as stubborn as a mule but it's working to her advantage! She'll keep fighting!
They finally came to move her. It took 20 minutes to get her gathered, 30 minutes to move from the bed to the table, 30 minutes for the actual test, and 30 minutes to transport back. When she arrived back in her room, her body was in total stress from the move. Her oxygen levels were critically low and her blood pressure was suffering. With enough meds and patience, these levels have stabilized.
As far as the results, we are not absolutely clear what they found but the night doctor mentioned some juicy veins in her groin area. Due to her skin breakdown in this area, we cannot access this directly but it is possible to access it as it branches down into her leg. They will discuss further in the morning. We would like to wait as long as possible to put in another PIC. Due to her reaction to the move today, we do not feel that her body is strong enough to have another move tomorrow AND an invasive procedure.
The plan is to dialysize at 6:00 tomorrow morning and start a regular IV for emergency meds during the procedure. Regular IVs last about 24 hours on her so we will cross our fingers. We still need PIC access for her high flow meds and TPN (protein substance) but hopefully we can make it another day without it.
We always knew Alex didn't make things easy. She's as stubborn as a mule but it's working to her advantage! She'll keep fighting!
We hope Alex has a good day today. Let us know if you need anything. We are thinking about you guys!
ReplyDeleteJosh, Amber and Blaze