Christmas is coming, and with four little ones in our house you can imagine the excitement brewing around here! Letters to Santa have been written and rewritten, finalized, and sent. We have a visitor from the North Pole who has taken to hiding in various places around our house. Jack thinks he is a spy of sorts, Sophie asked if he was a tattle tale, nobody wants Lucy to touch him because it is believed that he will loose his magic with the touch of a child’s hand, and Megan believes in the magic so much that she was upset when our little Elf on a Shelf was found to be in the same spot two days in a row. She thinks that I ruined the magic because I set him on our mantel the first day he arrived, but what she didn’t realize is that the magic is not lost if a grown up touches the Elf on a Shelf, right!?! Apparently, the Elf on a Shelf returns to the North Pole every night and then returns back to our house only to be found in a new location, his mission is to report back to the man in the big red suit all of the good, the bad, and the ugly. So far, so much fun!
Most of our shopping is complete, our house has been decorated since the Saturday after Thanksgiving, and believe it our not I have most of our packages wrapped(a first for me). I was on a mission, and a bit of an adrenaline high, after coming home from the hospital with Lucy the day after Thanksgiving. I knew we had to get things done because you never know what life will be like in our house.
We are feeling the holiday rush in the medical world, even though sickness never takes a vacation, the people that treat it do. We have made some decisions for Lucy this week that are impacted slightly by the holidays. We are scheduled next week Thursday to have Lucy transfused. We are putting off doing it this week because we want to be home for Christmas. She has been anemic for a while but is showing more and more symptoms of anemia, and at this point we all feel that there is the potential to alleviate some of her symptoms with blood transfusion. Lucy’s body is not able to make enough new blood to make up for the loss from weekly blood draws. This decision has not been an easy one to come to for us or Lucy’s doctors. Our biggest concerns are vein access, her hypoglycemia, and the risk of reactions. Our hope to is to do a directed donor blood transfusion, which means that Lucy will receive my blood. This is a process, that’s stating it mildly, but if it means that the potential for fewer reactions is there then we are willing to jump through the million hoops to get it done. Of course the holidays fall right in the middle of our five business days to get things processed. I have faith that things will work out…they have to!
In addition to a transfusion, we started Lucy on oxygen therapy. I know…just what we don’t need more tubes! Her pulse ox numbers are all over the place and her behavior has been…um…unusual for Lucy. She is acting more antsy, shaking and bouncing her head on things, waving her arms in the air, and pacing back and fourth on her wobbly legs, we think that she is doing this because for some reason it helps her feel better. Dr. R and I have had several conversations about this and we feel that her increased activity is moving oxygen through her body faster; therefore,we are starting oxygen therapy to see if it helps her to feel better and also stabilize her pulse ox numbers. Mito is a disease in which the body does not convert the food you eat or the oxygen you breath into the life sustaining energy your body needs to function. Anybody have any suggestions on how to get a two year old to keep on a nasal cannula?
Yesterday, we had an impromptu visit to DuPont to get Lucy’s belly scanned yet again, and also to have her blood typed and screened, one of the many hoops that needs to be jumped in order to get her transfused. While we were at day medicine getting blood drawn from her line, Dr. R came over to take a quick look at our girly and her bile output. On Monday Lucy had close to 600mls of thick, dark green, smelly, bile pour into her drainage bag. We are again dealing with small bowel bacterial overgrowth(SBBO) and this time it is back with a vengeance, we have only been off of an antibiotic for one week. We are putting Lucy on a new regimen of antibiotics, what Dr. R is calling the “big guns”, these meds are generally given as IV meds but we are going to be mixing them and administering them via her j-tube. Speaking of her J-tube, another KUB scan of her belly revealed what we were afraid of, her J-tube that she has had in place for all of six days had migrated out of her jejunum and into her stomach. We suspected this because of the dramatic increase in bile output and also because when we administered Lucy’s meds through her J-port meds came pouring out her G-port into her drainage bag. Ugh…for the third time in three weeks, we had to have another J-tube replaced in IR. This placement was by far the worst we have had to go through, as Lucy’s belly did not empty at all for the procedure and they had to suction out the contents in her stomach all the while trying to place a new tube in position. We are going to discuss with Dr. R what our options are for tube placement and come up with a better plan than what we are doing currently, weekly trips to IR.
In addition to all of the medical drama around here my parents, my brother, sister, brother in-law and the twins came for a visit. We have thoroughly enjoyed their visit, in spite of Lucy’s newest medical issues and Megan being home sick with a fever since Monday morning. Tomorrow morning if Megan’s fever still persists, then I will take her in to have her looked at.
Tomorrow is the last day before Christmas vacation for our kiddos! We are planning a surprise for our kiddos tomorrow night that I will tell you about later. For now, I am going to leave you to digest all that I have written, and thank you all yet again for all of your thoughts and prayers.