Jesse is going back on to his central line...
Published on Friday, March 13, 2015
Written by Sarah Kopacko
We have a lot that has been going on these past few weeks. As you know from prior posts, Jesse has been having more and more trouble with his enteral (J-feed) rate. He has been extremely nauseated over the past 3 months and increasingly upset as well. We have decided it is time to stop pushing his gut so hard. This has been a VERY hard decision, because we were so hopeful that we would be able to pull the central line and give him some more freedom. Well, starting Sunday night, he will be back in 10 hours a day of hydration through the central line. We are hoping to administer this at night, but that will require multiple diaper changes due the the hydration increase and if we wake him regularly at night to change him we will have to run it during the day instead. We will try for a few nights and see how it goes. He will need labs drawn for at least the first 3 days in a row, and that will be tough on him too, so please keep him in your thoughts. This is going to be a big adjustment for all of us, but especially Jesse. We have not used his central line since October 23, 2014 other than a daily flush. His new schedule will be 23 hours venting the G tube with the farrell bag, 23 hours of J feeds with formula, and 10 hours on the central line with hydration fluids.
On top of the central line news, we found out that Jesse now needs night splints to sleep in. He has horrible range of motion with his ankles (due to very tight leg muscles) and has trouble even getting to a normal 90° bend. The goal is to have him go to sleep and 90° and as he sleeps try to get his foot to a positive position (pointing up towards the leg to stretch the muscles continuously while he sleeps). This is going to be a big adjustment, and he already hates his AFOs so it will cause quite a bit of upset I am sure. We are hoping that by doing this we can give him better range of motion and prevent him from needing a wheelchair so soon. He is very off balance walking the way he does, and with this stretch maybe he will be able to control his movements a little better.
Yet another change coming is new SDO suits that the boys will both be fitted for April 3rd. This suit is meant to not only help with some of their sensory issues, but more importantly help them to sit and stand in a healthier way by stabilizing their truck with special bands that are in the suit. They will not have to try so hard to hold their trunk in the right position which will hopefully help with some of their hip, back, and neck pain. It will take some adjusting to, and we will need to make our house are bit cooler so they do not over heat, but if it helps it will be totally worth it.
We also got Colin's neuro psych eval in after 3 months of waiting. He went through very extensive testing and it came back with 89% likelihood of Autism as well as greater than 99% likelihood of ADHD. We will be working with the doctor to find the best plan of action for all of this so he does not have so much trouble with homeschool, listening to those around him, and interacting with peers. We are hoping to find a solution other than more medication.
We have an appointment with their Complex Care doctor on Monday and we will likely have labs for Colin to check his liver levels, as well as Jesse's daily lab for his new hydration therapy. We also have their first dentist appointment here Thursday and that causes a lot of anxiety for them seeing as they never have anything in their mouth other than a tooth brush. They have severe oral aversion so please keep them in your thoughts with that appointment too. The boys had their PT eval this week and are on the waiting list for 1 day a week of aqua therapy and one day a week of land PT. We are re also starting nursing care here in Nashville with a new agency, and are ready to get some good people in here helping with the medical so we can focus more on being parents and less on the medical routine. Thank you for your continued support and prayers. We hope you all have a great weekend.