This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Tuesday, April 15, 2014

An Update:

Once again, here I am posting an update that is very long overdue. We have been so unbelievably busy. Jonathan and I have just decided that is our new norm for now. We have a teenager who is looking to graduate high school in Dec. and possibly transfer to a university in Jan., a very active 8 yr old who is too busy growing, playing, and having fun to slow down and relax, and our sweet boy who is almost five and counting the days until he can go to school! We joke with each other that when we are too old to remember our own names, we will have the time to enjoy each other's company. Maybe someday... :-)
     So, on my last post, I explained that Lydon was having some increased GI symptoms. We went for the gastric emptying scan and as we expected Lydon was not able to consume the amount of food required for the four hour test. We were all a little disappointed because the four test is the most accurate test and can generally detect even mildly delayed gastric emptying. One thing we've learned in the last four years is to just roll with the punches. So Lydon consumed what was enough food for the 90 min test and was amazingly brave as always. He was taped and strapped to the scanner table and was so anxious because the room looked like a surgical suite to him but he relaxed and did a fantastic job of staying calm and not vomiting. We got the results back around the end of Feb that showed moderately delayed gastric emptying. His stomach takes about twice as long to empty compared to normal emptying times. Can you imagine what it must feel like to eat and feel the same fullness in your stomach hours later? That's what Lydon feels nearly everyday. We have seen that evidenced. He is eating less, less frequently and complains of a lot of stomach pain. After we received the results, we discussed them with our motility specialist. We decided to treat Lydon for bacterial overgrowth of his intestines and also try Erythromycin which is commonly used to increase gastric emptying. We are rotating the use of these two antibiotics and monitoring him to see if there is any improvement. At this point, I do think it has helped some with his stomach pain but we haven't really seen a difference with his eating. Most of the time lately, he is too full from what solids he has consumed throughout the day that we have to tube his formula. We will be following up with our doc again soon and discuss the plan moving forward. I am content with keeping things as they are for now as long as Lydon's weight is stable and his other GI symptoms do not get any worse.
     Pulmonary wise Ly is ok. He definitely needs his oxygen when he is active, sleeping or extra tired. We've been able to catch him with the pulse ox during or immediately after a couple of activities lately and he was somewhere between 88-92%.
     We saw the eye doctor back in well. We had been noticing his left eye seemed to be turning inward. After his eye exam, the ophthalmologist told us that his eye is turning in and he is more significantly far sighted than is normal. So he picked out bright bright blue glasses! Our handsome boy is even smarter looking now! We followed up with the eye doc last week and his vision is even worse in that eye. So, we are now having to patch his right eye for two hours everyday in hopes of restoring the vision in his left eye. :(
     Our other concern for Lydon as always has been his endurance, fatigue, and frequent colds in relation to his hypogammaglobinunemia or low immune system.  We've been able to keep these symptoms well controlled with our daily use of meds, supplements, fluids and oxygen. However, that is much harder to do with him being exposed to the public school environment. Especially after his frequent colds and hospitalization earlier this year. So, after much discussion, Jonathan and I decided to add another doctor to our list of specialists and consult with immunology. Our appt was very positive. We are all on the same page of trying to achieve the highest quality of life possible in allowing Ly to go to school. We are waiting on the blood work to come back before any decisions are made regarding treatment. We did start him on an inhaled steroid.
     We fought through some challenging issues with our insurance and formulary coverage for Lydon's formula. It was an absolute nightmare but for the moment, that is all worked out. We are working on Lydons increased sensory issues with noise, textures and smells that trend to greatly effect his GI symptoms. We have an amazing team that does an incredible job of daily management for an even more amazing little boy. His strength is inspiring. He keeps going when he is literally blue and vomiting. Lydon strong...we will never stop fighting for him. Our next big challenge... Pearland ISD and Kindergarten!! Stay tuned... :)

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