The last four days have been rough getting Nathan to drink his EleCare. He could care less about it. I really think that if we didn't offer it to him he may even be happier... I can tell he's getting frustrated that we are constantly offfering him his sippy cup all day long. I have tried a million different cups, and nothing entices him. He will take it from a spoon which is good, but oh so ridiculously slow and just proves to me the fact how much he misses eating food! So we have been constantly feeding him through his NG tube every 4 hours or so. I give him 20 minutes to drink it on his own, then it's down the tube it goes. His virus/cold/cough seemed to be better until this evening. He is starting to cough his little head off right now as he sleeps... I am fearful that another virus is lurking and will make it's full fledge appearance in a day or two. I would give anything to be able to trade places with Nathan right now! What he is going through is just too much for any one, let alone a 14 month old! Our visit with Dr. Williams next Tuesday can't get here quickly enough... we will schedule his biopsy that day for the beginning of June. We are anxious to see what his esophagus looks like and what his eosinophil count is on the biopsies.
Most days Nathan eats like this right now:
Sometimes is nighttime feeding runs into the morning and he's stuck wearing this huge backpack with his feeding pump in it until the feed is finished:
I've said it before and I'll say it again... I don't want to have Nathan grow up too fast, but I can't wait for the day when he can talk and tell us what he's thinking and feeling. But even with that I am realizing that this darn EE is just a very difficult disease to live with and manage and the fact that when he can tell us if something hurts or why he doesn't want to drink won't unlock any of the many secrets of EE. We are becoming more accustomed to the in's and out's of it, but it never fails to throw us for a loop every now and then. There are so many other "EE moms" I have met through this blog and on facebook and I am forever grateful for their willingness to offer advice and tell me that things are going to be okay when times are rough for us.
Angie will be here tomorrow to weigh Nathan and to help me put a new NG tube in on his opposite nostril so that his left cheek can have a break from the tape that is constantly covering it holding his tube in place. I hate when it's time to change his tube... he hates it and it hurts me because he can't understand why we are holding him down and putting a tube down his nose. He really does handle it better that I think I would, but it's just stinks because there is no explaining and reasoning about it, we just do it... he gets mad... and then he gets over it, but it's something that no child should have to endure, especially over and over again like he has to. When Nathan was in the hospital getting his NG tube for the first time, Dr. Williams said that he only likes to use them for 4-6 weeks then it's on to a G-tube. Next week will be week number four nearing week number five. When we meet with Dr. Williams on Tuesday next week, we will be talking about it with him and discussing when to do it. Mark and I have talked and we agree that when he has his next endoscopy in a few weeks that it should be done then so that he won't have to undergo an additional anesthesia to have it placed. It's hard enough having to have him under anesthesia several times a year for his scopes we don't want to do it more than it has to be done already.
It's amazing how quickly Mark and I are becoming okay with the things we are dealing with. I remember watching various videos on the internet about EE the night before Nathan's first endoscopy. I saw kids both with and without feeding tubes and I cried at the overwhelming information I was learning about EE. I was in shock at the depth of seriousness of what Nathan was being checked for. Originally, when Dr. Williams said he was going to check Nathan for eosinophilic esophagitis, I was so happy to have an answer for what might be wrong with him other than "he's just got a bug", that I didn't even ask Dr. Williams questions about it until after the diagnosis was confirmed by biopsy. Dr. Williams is a very optimistic doctor, which I do appreciate. When I asked him about the kids I had seen in the videos about EE with feeding tubes, he said that some do end up with them, but most don't. That gave me hope that Nathan would be in the most don't category. Well, now we are in the midst of living our worst fear for Nathan... the feeding tube. No parent wants to see their child like that, no parent wants to feed their child this way either. I will say that knowing Nathan is getting adequate nutrition makes it a bit better, but it's still a heartbreaking way to feed your child.
I try to remind myself often of different medical issues others have with their children and know even with all of this chaos, we still have it pretty good. We still wake up every morning to our smiley baby Nathan and we still get to give him hugs and kisses before going to bed every night. Yes, learning you have a child with a life long chronic illness that currently has no known cure is devastating. However, I know their are numerous parents out there that have lost their kids to cancer, or other terminal illnesses that would give anything to be in our shoes right now.