G-Tube Update

Thanks to everyone for your prayers, emails, texts, phone calls, etc. We are so blessed to have so many people rooting for our family! Mason's G-tube was placed 10 days ago and he is doing very well. His tummy was quite tender for the first week because the procedure was done through his belly button. However, over the last few days he has been acting more and more like himself and is no longer taking pain medication.

Getting used to all of this will take awhile... there are so many parts and medical supplies are scattered throughout our house right now. The doctor has recommended that we feed Mason through his G-tube at night - over a twelve hour period. So far, we have had a lot of leaks and tons of laundry to do. However, last night was the first night that there were no leaks!!! So Mason woke up with dry clothes, dry sheets and a very full belly.

One of our current challenges is cords at night - Mason wears a night brace that is pretty constricting but will hopefully help correct the curve in his spine. However, he must also wear a pulse ox sensor on his toe while he sleeps - so that we can monitor his breathing in the brace. The feeding tube that runs to Mason's g-tube is six feet long. These two contraptions together make it difficult to relax while he sleeps. He still manages to twist and flip around so much that we need to check on him frequently during the night and untangle him as needed. I wish I could find a solution to this problem but so far I have not found anything. If you are reading this and you have a suggestion - feel free to let me know!

Next week, we will be at Mayo Clinic in Rochester, MN. This will be our first visit to Mayo and we are very excited. The Pediatric Neurologists at Mayo Clinic are among world leaders in research studying genes involved in congenital myasthenic syndromes and developing cutting-edge therapies to treat congenital myasthenic syndromes.

The picture above was taken about two weeks ago before the g-tube surgery. Henry is in charge of turning on the Pulse Ox machine at night for Mason... these brothers were really made for each other :-)