Monday, February 18, 2013

Appt. With Dr. Williams...

Alright... so I failed to post about Nathan's biopsy results from back in November. That's partly because the news wasn't good, just as we expected based on what Dr. Williams saw when he did the scope and partly because I just thought that maybe if I didn't post it, it wouldn't be true. Silly, I know, but it was my way of thinking and then... time just got away from me also.

So the results showed 30-35 eosinophils in all areas biopsied, which means his EoE is active and not under control. His esophagus also showed furrowing which is a sign of damage to the esophagus caused by the elevated eosinophils. When Nathan was first diagnosed in March of 2011, his counts were 75+ and he didn't have furrowing of his esophagus, just another way this crazy disease makes no sense at all. No wonder it's so hard to treat. Ugh.

Today we met with Dr. Williams again to determine the next step in Nathan's course of treatment. He will have his next scope on February 28. This will be his 5th scope in two years. Since  his scope in November and removing so many foods Nathan's appetite has been terrible, at first we thought is was just him adjusting to having his favorite food (potatoes) removed from his diet, but it's continued on now for 10 weeks. Nathan will say he's hungry, we'll offer him the 6 foods he can eat and he either wants none of them and grabs his EleCare, or he'll say he wants something, takes one bite and then tells us he's not hungry. Needless to say, mealtimes, which we don't even really do in our house anymore, (because every hour or so we're offering him food in a desperate attempt to get him to eat something) haven't been fun. It makes for an exhausting day constantly pushing food on Nathan in hopes he'll want it. He lost weight in December due to this, so we have increased his amount of EleCare and he's done pretty good drinking it on his own, but we are back to using his g-tube fairly regularly again, but because of this he as regained the weight.

Last week he ate two small bananas one right after the other and then asked for a third, I was elated because he hadn't wanted a banana other than jarred baby food banana in weeks. The third one he just looked at and didn't touch, I didn't mind because he had just had two, but since that day he won't even touch a banana now. This is pretty much what he does with all of the foods he's allowed right now. It is so frustrating!!! He'll eat something pretty good for a day or two and then want nothing to do with it for a week or longer. We are at a loss as to why and Dr. Williams is also. We are hoping that the scope reveals an answer, which means his counts will still be high. Which is a double edged sword; it will explain why he's not interested in eating right now, but it will also mean that these 6 foods he "passed" last year are no longer safe.

A couple of weeks ago Nathan was begging Mark for some broccoli, Mark gave it to him out of desperation for him to eat that day even though it wasn't one of the 6 "safe" foods, Nathan enjoyed it. He's asked for it off and on and done well with it so far. Today he asked for it for lunch and he ate the tops off of two pieces and then said he was done. For dinner tonight he asked for it again, and ate 4 whole pieces, which made Mark and I happy. (It's kinda sad when your child eats 4 pieces of broccoli and you're excited and think that he ate a good dinner, but that's what we do.) Aside from his EleCare this is all he ate today, and this is what a normal day is food-wise for him currently. It's very frustrating as a parent to hear your child say, "I'm hungry" and then them not want to eat, or just barley eat and then say they are finished. Frustrating isn't strong enough of a word... it's downright heartbreaking. We hear this from Nathan daily. It's awful.

So, we've definitely moved backwards with all of this EoE stuff this winter, but Mark and I are trying very hard to remain optimistic and keep our faith that this will get better and Nathan will be able to eat without food hurting his little body one day. Some days are harder than others, but most days are good, we've lowered our expectations for him for now so that we don't beat ourselves up too much over how hard living with this really is. He did so well in the beginning once he was diagnosed and we began treatment that Mark and I kind of lost sight that this can be a back and forth process treating this disease. Despite all of this though, Nathan remains his happy, silly, energetic little self for which we couldn't be more thankful. He smiles all day long and has no idea how amazing and strong he is. He mentions a food that he can't eat because it makes his tummy hurt, and follows up with, "I'm so sorry, mommy." Bless him, he's so content with a situation that would be unimaginable to most.

Rejoice always, pray without ceasing, give thanks in all circumstances.
1 Thessalonians 5:16-18