Day 70 - Today I give praise to the LORD for showing me the way, for giving me the answers to the problem we faced, for HIS comforting us all in our time of need. Yesterday was another one of those days that broke our hearts, and many tears were shed, but today is a new day filled with joy and we are thankful for all the blessings. Solving Daniels tube feed problem has been a real challenge and has lead to much frustration and yesterday evening we all reached our breaking point. He had one successful gravity feed yesterday at 5:30pm with no stomach pains. Then at 9:30pm gravity feed he had stomach pains and nausea. He really was feeling bad and said some words out of frustration which really broke our hearts. We shed a bunch of tears last night, spoke, comforted him and prayed until he eventually fell asleep. Because of the late evening events I stayed at the hospital and left around midnight to try and get some sleep. Although I only slept about five hours I was blessed with the most restful sleep that I have had in a long time. The answers to all the tube feed and stomach pain problems came to me is a dream and suddenly I knew what needed to be done. The problem has not been the formula but rather the delivery method and why I never saw or picked up on it before is beyond me. Suddenly it dawned on me that his stomach pains only come when I use gravity feed method which gives him a large amount in a very short time. Whenever I fed him overnight by pump (low and slow) he never had stomach pains, but the formula is so thick it would clog his feeding tube, or clog the pump side, and on two separate occasion we had to have his feeding tube replaced, which caused me to shy away from using the pump. A set of numbers repeatedly came to me in my dream and then I realized there is a simple solution to the problem. I needed to give him his feeds by pump at a slow rate, and not use a large volume of formula, periodically shake the bag to keep the formula from settling, and flush with water at a set interval. Kept seeing the rate set and alarm buttons of. The pump in my dream which told me I could control the feeds even overnight while sleeping to wake me in before his tube would get clogged. I awoke refreshed and ready to put this plan to action and rushed back to the hospital excited for the first time in a long time. When I arrived at the hospital I told SAY and Daniel about the dream and the answers that I got. I started feeding him by pump at 7:40am and now at 6:40pm and things have been going well with no pains or nausea, he has had three successful feeds with no pains or nausea. YES its a little early, but for some reason I have the confidence that this is going to work and we will be able to manage this. I did get a slight scare around 2:45pm when one of the doctors was examine him and accidentally caused his feeding tube to become disconnected. Before reconnecting something told me to flush with water and imagine my fears when I realized his feeding tube was clogged. I hit the nurse call button and I went into action trying to unclog his feeding tube. Panic did not set in and I called on the LORD to help me, with the help of some warm water and a little suctioning action I was able to get it unclogged just as the nurse was entering the room. After reconnecting his tube and things are back to normal and feedings continue. Feeding by continuous method will require him to be on the pump for about 22 hours of the day with only 2 hours off pump, but we know this is the only way to get him the nutrition he so desperately needs. When the doctors made their rounds today they gave us the nicest compliments as his parents.They told us that there are no other patients like Daniel in the world, with the complex medical condition and history that he has. They are no medical journals to tell them how to treat, or what works, guess thats why its called practicing medicine. They are basically learning as they go and told us they have learned a wealth of information from us and that we do an excellent job with his care. Daniel is the STORY and he is writing the medical journals and he will be the guideline and is setting the bar for others to follow. Daniel got out of bed early today and is in great spirits. We played a few hand of his favorite card game Vanguard and he has been sitting up in a chair (not in bed) and weve been watching Anmine movies all day and of course doing the normal hospital things. For the last few hours he has been looking at all the menus of his favorite restaurants like Olive Garden, Red Lobster and Subway I dont know it of he is tour turning himself. Well its 7pm and we are going to play another game of a Vanguard. Good night to All and God Bless.
Posted on: Wed, 24 Dec 2014 01:07:21 +0000