We have yet to go a week since April of 2009 without having a medical appointment, or two, or more, or an urgent need of some sort in which we had to go to the hospital. We almost made it a week this week, when suddenly things changed. Lucy’s central line broke when an accidental trip on the line caused the line to snap!
Things became very urgent this afternoon when this happened! Within seconds the line was clamped, medical supplies were gathered, Sophie ran and buckled herself in the van without socks and shoes on because she did not want to waste any time looking for them bless her heart, and plans were made to get to the DuPont ER STAT. Our biggest fear, aside from her bleeding which was under control once the line was clamped, is Lucy’s hypoglycemia. Lucy cannot be off her TPN for longer than a few minutes before her glucose levels begin to plummet. When we left our house her glucose level was 105, when we arrived in the ER twenty five minutes later her level was 50. Dr. R notified the ER that we were coming and once we arrived they were ready and waiting for us.
Once in the ER a peripheral IV (PIV) was necessary, because obviously we had no central point of access anymore. Finding a point of access was a struggle, as usual, and even our backup go to spots are no longer options for us. Eventually, the IV team was able to find a spot deep in the bend of her elbow, and although it was a rather uncomfortable spot for Lucy it allowed us to give her D10, the highest dextrose solution that is able to be given in a PIV. Lucy was given a 60cc bolus of D10 straight into her IV, and was then started on a continuous drip at a little more than twice the maintenance rate because our girly is used to a much higher concentration of dextrose than you can give in a PIV. Once things with her glucose stabilized, we could get on with the next big problem, repairing her line. Because of where the line broke they were able to repair her line in the ER with a repair kit, another prayer answered. I kept thinking on the drive over if we needed an OR time slot our chances of getting one on a Friday afternoon were slim to none… and our chances of getting one over the weekend were even less. I chose to stop thinking beyond that point. Of course nothing can be that easy for our girly, the size of the the line that Lucy has did not fit with the size of the repair kit. For all you knowledgeable central line people out there reading this, Lucy has a 5 french(fr) single lumen Broviac, we had to use a 4 fr repair kit to fix her line because the 5 fr was just too big to connect to her line. We glued the 4 fr repair line on and were told that we had to wait four hours for the glue to dry before we tested the line to see it worked.
(I took this pic tonight so that I had a visual reference to look back on for future reference as my memory is not what it used to be, it also happens to be a very befitting pic to post here:)
Dr. R met with us in the ER and jokingly asked, “So who did it?”. We also talked a little about a conversation that I had with Dr. Shoffner’s nurse earlier in the week. Dr. S is looking into trialing a medication not typically used for motility but for hypotonia, Neostigmine. Dr. R is going to give Dr. S a call next week to learn more about this, but it doesn’t sound like Dr. R is a fan of this med for our Lucy for several reasons. Instead our conversations have been more focused on the need for some sort of bowel surgery for Lucy. What surgery is the question and would Lucy be able to recover from a surgery of this magnitude. We have a lot to think about, but for tonight we were just focused on getting her line repaired and going home.
While literally waiting for glue to dry, we were visited by some of our favorites in the hospital, and even went upstairs to meet another fellow mito family that I “met” online on a mito forum. I just so happened to read their blog last night and commented to Drew about so many of the similarities between their child’s issues and Lucy’s that I felt compelled to get in contact with this mom. Who would have guessed that this opportunity was going to happen tonight. There is something so comforting when meeting others who can really relate to what you are experiencing. The mito community is really and truly amazing , and we are so grateful to be in the company of so many amazing families!
After another very long day, prayers were once again answered and Lucy’s line repair appears to have worked. We signed the discharge papers at 9:30 pm and headed home to gather the rest of our family from the Puff’s, who once again took care of our other three children like they are their own. What would we do without the Puff’s… I don’t want to begin to imagine.