Today started like many days in the hospital…early! Lucy has to have labs, labs, and more labs drawn daily for cultures, a CBC, antibiotic levels, and to check her chemistries. All of this happens somewhere between 3:30 am and 5:50 am…which is early! I learned from morning rounds that Lucy’s cultures are still positive for the same bacteria, the lumen that was negative yesterday is now positive again and the other lumen continues to remain positive for the bacteria. Apparently it is a “sticky” bug that doesn’t like to leave. Dr. R discussed a plan with me today which made me happy…having a plan that is, and not necessarily the plan, just to be clear. If today’s cultures are still positive, then the plan is to head to the OR sometime tomorrow to have her line pulled and replaced with a temporary femoral line as Lucy’s life depends on reliable access. We then have to wait two days for negative cultures, if cultures are negative then on Friday she will head back to the OR to have a new permanent line placed just in time for us to go home, pack, and head for the beach! Darn this child, she always cuts things to the last minute…I wonder who she gets that from.
Our days here have been long. Sleep is always a challenge, it seems to take a few days to get back on a schedule. Entertaining Lucy is also a challenge. Her attention span has been short, not unlike most toddlers, but she is unlike most toddlers and is confined to a bed and connected to machines with a half dozen lines coming off her body. She and I are going a little stir crazy staring at the same four walls, we have plans to head downstairs tonight to the PACU waiting area and visit the fountains. During this admission we have some fellow mito friends who are staying in the room next to ours, it has been nice to have someone else to talk to who “gets it”. Please keep Wyatt in your prayers as he is battling yeast in his line making him one very sick kiddo.
I feel a little guilty saying this, but it has been a bit of a break for me having all of the nurses on the floor taking care of the numerous daily medical needs for Lucy. They keep telling me that it is a break for them having a mom who is so involved in their child’s care, I guess you could say it is a win win all the way around. Lucy has a pretty grueling med schedule, currently she has sixteen IV med infusions daily in addition to j-tube meds, and an every three to four hour cathing schedule, she is the definition of high maintenance!
I miss Drew and the kids, we were unable to see them today as our Monday schedule is pretty full without adding a visit to the hospital in the evening. Hopefully tomorrow we will be able to eat dinner together, the newly remodeled cafeteria reopens tomorrow for the first time in nearly two months. We are definitely going to have to check it out.
Thanks as always for your thoughts and prayers, love and support, it means so much!