Visit to General surgery for Tucker’s mickey button proved ‘Yup it leaks”. No burning of the tissue was done, just a new script for reflux medicine to help with the acid in his tummy that is making the skin so raw. And some new ointment to put around it to help protect the skin. Two full boxes of poly mem because we are going through it so fast with the leaking. They could only explain that when illness or a cold hit that the buttons tend to leak more. No rhyme or reason to it, don’t know why, but they do. You just have to try to minimize the leak and keep the skin dry so more problems don’t occur. YA well, more problems occurred because we couldn’t keep up. Now we have a very sore tummy and a button that Tucker constantly tugs at. Hopefully these things that will minimize the acid and help protect the skin will work and it can start healing.
So for now, we are on Zantac and a heavy diaper rash ointment mixed with some Nystatin powder. Change dressing every time it is wet (ALL THE TIME) and a follow up in two weeks.
Next Wednesday we have a cardiology appointment. It will entail an echo of his heart and EKG. This is the appointment we will be discussing the heart cath and next surgery. I will also be discussing the option of tonsil surgery and what that means for his heart. Should it be done before next heart surgery or should it wait, those kinds of things. That visit I will also see what his weight is. As everyone is aware, or not aware of, we lost our nutritionist on Tucker’s 3rd birthday. She was monitoring Tucker’s weight and making sure we don’t lose or gain too much and helping us move from Mickey button feeds to mouth. We have accomplished that however we don’t know if we are gaining or losing. I will get a good weight on Tuck that day and figure out if we need to work with Nutrition again to keep in the right direction. It is my understanding from todays visit that they will not take out the mickey button until he is eating and gaining by mouth for 3-6 months. Tucker is not consistently gaining so we need to watch carefully and make sure he is getting the proper nutrition to keep him growing correctly and healthy. This may be something we have to pay for out of pocket as our insurances (believe it or NOT) will not pay for nutrition. Wait; let me correct that, nothing to do with nutrition. Not feeding tubes, not food for the feeding tube….NOTHING!!! Gotta love it!!!
The Twelve Mile Bike Ride
6 days ago