Monday, May 9, 2011

Hard Day...

Sunday morning Nathan's fever was gone, but he has refused his EleCare like never before the whole day. When he woke up at 6:30am he took 2 ounces and I gave him the remaining 4 ounces through his NG tube. At 12:30pm he took 3 ounces, and I gave the remaining 3 ounces through his NG tube. Normally, Nathan will drink well in the morning, and loose interest as the day goes one.

After a wonderful Mother's Day lunch with Mark's family, we came home and sleepy Nathan laid down for his afternoon nap. All was well until he woke up an hour later. Mark got him up because I was napping in preparation for working 10p-630a overnight. Nathan took 3 ounces of his EleCare for Mark... 15 minutes later he vomited it all up. I got up to help Mark clean him up. I noticed he felt like he was on fire when I was getting him into his clean onesie... he had a fever of 103.9! I immediately gave him some Ibuprofen, which came back up 30 seconds later.

We gathered a few things and hopped in the car and headed to KidMed... what a weekend for Nathan's GI doc to be on vacation...arrgh! This was our third day in a row taking Nathan to the doctor. In the last three days I have learned to expect very little of medical staff that aren't familliar with Nathan's history when mentioning eosinophilic esophagitis to them. Between KidMed and Nathan's pediatrician's office, none of the nurses we've had have ever heard of it. The doctors we've seen at these two places act like they are familliar with it, but I don't get the feeling that they truly understand like Nathan's GI doctor and allergist do. I feel very misunderstood around these people... they don't appear to understand why one episode of vomiting and Nathan not wanting to drink when he has a "cold" is such a big deal to us.

Sunday night at KidMed was a different story with the Nurse Practicioner that saw Nathan... she told us that she has a close friend who's three year old boy has EE too... she put her hand on my shoulder as she told me this and I felt compassion and understanding just pour out of her and I could see it in her eyes. I literally felt a weight lifted off of me, because I knew she understood how big of a deal this is. In two days, since I took Nathan to KidMed on Friday afternoon he has lost just under 1 pound... she understood how serious this was and knows how frustrating it is to work so hard at getting him to gain weight for it to be lost so quickly because of a virus. She is leaning towards that being the cause of Nathan's illness right now, which is entirely possible. But my motherly instinct being on high alert about any and everything that could be a sign of an EE allergy is telling myself that he has now been eating pears for a little over a month... that's near the time frame his reactions have taken in the past before the vomiting started. So, I'm thinking.. is it just a cold/GI bug? Is it a cold and his EE because of the pears causing the vomiting? There are so many variables with EE and it's so frustrating to try and firgure them all out!

For now, we will keep Nathan on Zofran to help with the vomiting, which if it works will mean this is most likely not EE related vomiting which will be great news! By the time we got home from KidMed it was 9:30pm and Nathan had only had 12 ounces of his EleCare all day... there is no way we can get all 20 ounces that he is lacking in his overnight feeding because we were instructed to mix his EleCare half and half with Pedialyte until his stomach calms. So he will likely loose more weight before he starts gaining again. I hope that by the time I get off of work in the morning he will be feeling better and will be able to drink well for me. I'll be sure to update in a day or two to once I know where this is going.

I apologize for the long post... this weekend was just way too eventful for us in all the wrong ways!


  1. How much does Nathan weigh?

    Gosh darn dumb doctors! We are blessed to have wonderful doctors who "get" it but our GI is a little more conservative than our Ped would like. There is a pretty good chance Tyler will have a feeding tube placed if he hasn't gained weight by tomorrows weight check.

    Praying it is just a virus and he will make up the weight quickly. Hang in there! He can do this and YOU CAN TOO! *hugs*

  2. I am praying that Tyler's weight is up tomorrow! The NG tube was hard at first, but it now provides relief to us to know we can get the nutrition in Nathan that he needs to grow! Seeing the numbers on the scale go up and being able to see he's getting bigger are so worth it! Nathan is doing better today... this morning he piddled with his EleCare, but this afternoon he just drank 6 ounces in less than 3 minutes! I think he is getting over this bug!!! Thanks for all the encouragement you send us!!!

  3. Hi, I am the friend of Nurse Amy at KidMed. My son also has EE and is now 3 1/2 yrs old. She has answered my phone calls in the middle of the night when I too have been worried about excessive vomiting and up to 5 lb wt loss in a single day. She is an amazing nurse and friend and I am glad she was there to help and comfort you. She was very impressed with you and your dedication to your son. I hope to continue to follow Nathans journey and would love to give help/advice where or when needed. I belong to a fantastic support group that meets bimonthly in the DC area and we get the kids together 2x a yr. Let me know if you are interested in getting info. Jenn Rath