Friday, last week Nathan had his follow up appointment with Dr. Williams 2 weeks after getting his G-tube placed. Dr. Williams was pleased with Nathan and how he has adjusted to his tube so well! Nathan was cleared to take real baths again and also to go swimming! We discussed the possibility of taking Nathan off of the Pulmicort steroid that he has been on since his diagnosis in March... Dr. Williams agreed that it would be appropriate to wean him off of it over the course of two weeks and continue on with the top 8 elimination diet and Prevacid.
Nathan will have another endoscopy with biopsies on August 17 to see how removing the steroid affects his esophagus. Some patients with EoE can control symptoms by diet alone, but many cannot we are praying that Nathan will be one of the "lucky" ones that can. On August 17, Nathan will also have his PEG tube switched out to a AMT Mini One button... we are looking forward to that more than anything. Having to constantly be aware of his feeding tube and where it is and what it might be getting caught on is tiring and the "button" will alleviate a great deal of worry! Nathan had some granulation tissue (GT) forming near his stoma and Dr. Williams treated it
|AMT Mini One button|
with some silver nitrate it worked wonders... until he spent all afternoon in the pool on the 4th of July. Frustrating, yes, but as with most aspects of EoE being a constant back and forth, we are just dealing with it. It doesn't seem to hurt him thank goodness, but it sure isn't pretty to look at! I will give Dr. Williams a call in the morning to see if there is anything else I can get from the pharmacy to treat it from home. It's only about the size of a pencil eraser right now, which isn't too bad compared to photos I've seen, but we want to stop it from getting worse.
We had a wonderful cookout with some of our dearest friends on the 4th of July! Nathan loved playing in the pool and getting in and out of it constantly over and over again. Fun for him, but exhausting for mommy and daddy! Needless to say we all slept like babies that night!
|OooOOooo... check that out!|
|Hanging in the pool!|
|Cooling off with some water!|
|Thinking about getting out...|
just to want back in 30 seconds later
|Drinking water from Auntie A's cup!|