It has been a rough week , but the past few days have been terrifying as we have watched our little one decline faster than we ever thought possible. Mito is a baffling disease, there is no guide book on how to treat these kiddos as each and every one of them has different issues. There are similarities, but no two mito patients are the same. That being said, Lucy likes being different, heck she is our only red head, blue eyed baby after all.
This morning when Dr R came in he was surprised, I believe that is the appropriate word, to see Lucy the way she was. We talked about what we wanted for Lucy and discussed putting in a central line as a last resort. We kept referring to the a central line as “the enemy”. Central lines and mito kiddos are complicated to say the least, the risk of infection is so great. As the day progressed Dr. R kept checking in on her and we kept having to make decisions as to how to keep her comfortable and get her gut functioning. We want to preserve organ function, he explained it to us this way, “if you don’t use it, you’ll loose it”. We agreed to try and force feeds but Lucy’s body had other ideas. She was unable to tolerate her feeds and her glucose started taking a dive. Lucy’s life is dependent on having peripheral IV access. Lucy’s body had no access points left.
This evening before Dr R left for the night we agreed to place a PICC line in Lucy tomorrow. We chose a PICC over a central line because with a PICC line you can be put under with sedation instead of general anesthesia. Well, we learned several hours later that was not really the case for Lucy as they use Versed for sedation. Since Lucy can’t have Versed she would have to be put under with general to have the PICC placed. To make matters worse, we could not get a PICC placed tomorrow because there would be no radiologist available to do the procedure. She could however be placed on the schedule first thing Wednesday morning. That was no longer an option as Lucy lost her fourth IV in six days at 9:15 tonight.
This brings us to where we are right now. it’s 1:30am and Drew and I are sitting in the PICU waiting room waiting for Lucy and the doctors to be done placing her line. This will be a temporary central line, as she will need to have another one placed within the next week for more permanent access. It buys us time to plan and schedule a line procedure for sometime in the next week. It was deemed critical to get this line tonight, her life depends on it.