Today’s therapy at MFB started with Ellen being very concerned with the way Jordan sounded. She has been very wet and rattly sounding for a week or so. I asked about Jordan’s MRI and her not being able to have anything to eat/drink after 7:30 am on Thursday. Nurse Jane was concerned that she may dehydrate if not allowed to have an iv and suggested that I call the nurses line listed on the back of the brochure. Ellen and Jayne talked while Nurse Jane listened to her lungs/airway. Then they came over and had an informational discussion about feeding tubes with me. They explained that they don't really have many more ideas of what to do to safely feed Jordan. Since her appt with Dr. Burdo-Hartman is next week, they hope to avoid her having to go through all of these same steps through their program so they will be providing Dr. Burdo-Hartman with updated progress information explaining all of the different things they have tried and the ways they haven’t worked. They explained that an NG-tube would go through her nose and that it would be in for at least 2 months. It would make it even more difficult for her to swallow but that if B-H feels that they can get her eating safely in that time frame, she might go with it because it is less invasive. If they feel she needs a long-term solution, they may go with a G-tube which would require surgery and would be in for at least 6 months. They will provide all updated info to Dr. B-H before next week’s appointment so that she will know where Jordan has been for the past few months.
Jayne, the dietitian explained that after we see Dr. B-H, we will be served through the dietitian in their program so she would no longer attend Jordan’s therapy sessions.
Ellen decided to go back to spoon-feeding. We used a 1 oz medicine cup with honey/pudding thick Pediasure and within a few spoons, Jordan was sounding wetter than before. Wondering if the cause was a reaction to dairy, Ellen thickened some apple juice and we used a spoon of apple juice after a few spoons of Pediasure. Jordan loved the taste of the apple juice and was sucking it all out of her mouth. She was VERY hungry and wanted sooo badly to eat, but wasn’t swallowing well so we had to go very slowly. After about 2 oz of Pediasure by spoon we switched over to the bottle. Ellen decided to take out the valve system of the Dr. Brown’s bottle because it seemed to be getting in the way of the thick pediasure getting into the nipple. This was causing much more work for Jordan to eat. Jordan took just under 2 oz fairly quickly and would have had more. Ellen recommended that I follow this same procedure for 5-6 feedings/day – start w/ spoon feeding Pediasure and apple juice and then switch over to a bottle.
We have therapy again tomorrow so we will see if the works better for the next day...
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