Monday, November 7, 2011

G-Tube Switch Out...

Much excitement came with Nathan getting his AMT Mini One Balloon Button back in August.

But there was one thing I was dreading...

The responsibility of changing it every three months, by myself, at home. I became a pro at the NG tube and that didn't phase me a bit. This seemed different to me because of the fact there would be an open hole in  Nathan's tummy. I realized that it would be a "healed" tract from the outside directly into his stomach, but some part of me couldn't shake the thought of his insides falling out once I removed his old tube. Impossible I know, but I couldn't help but think of it. Ridiculous me.

Thanks to my dear friend Katie, Nathan's tube switch out was a breeze today. It was done and over with in less than a minute! Nathan cried a bit when I pulled out his old tube, the balloon deflated a bit unevenly and there was a slight resistance when I took it out. I don't know what, if anything, I could do differently next time to help make that easier. It wasn't horrible, keep in mind. I waited for Nathan to calm down so that his stomach muscles would relax enough to allow me to easily slide the new tube in. In it went and I inflated the balloon with saline and we were all finished! I feel confident that the next go round I could even do it alone with Nathan.

Thanks again Katie for getting excited about things like this and being so willing to offer your assistance! 

Our sweet boy makes us prouder and prouder every day! I am amazed at how tough he is!

Saturday, November 5, 2011

Boy Will Be Boys...

We had a fun afternoon with our good friends Anne and Justin at the Brunswick Stew Festival today!
Nathan found some rocks to play with!
Ah... boys!

We were all looking forward to nap time once we got home. Nathan had other plans... he was walking quickly with his sippy cup and tripped over something and fell. His head hit the rim of the cup making a fairly deep gash through his left eyebrow. We got the bleeding under control and hopped in the car and headed straight to Kid Med. Nathan was such a trooper, while waiting to be called back to see the doctor, Nathan was running around the waiting room and trying to climb in chairs and hop out of them. I tried my best to get him to sit still, but he isn't a sit still kind of boy.

Nathan got 5 stitches and was super brave getting them! He only cried when they wrapped him up to keep him still and then again when they were injecting the numbing medicine. Once that took affect, he was calm and did great! He actually fell asleep in the 5 minutes it took to place all of the stitches! I love our brave Nathan! He gave the doctor a high five on the way out the door! I guess that was his way of saying, "Thank you!"

The doctor said that Nathan's eye will likely be swollen shut by tomorrow morning, which I can already see beginning to happen. Bless his heart. We will return in 7 days to have the stitches taken out... that should be fun. I know it wont hurt him, but I'm sure it's going to bring back terrible memories for little Nathan. But like getting them, he won't remember that either one day. :o) The next time Nathan wants to skip nap time I hope he chooses a little less exciting way! 

Nathan's self-portrait in the car on the way to Kid Med.

The Culprit

Opening wide to put that binky in!

Still smiling!

All better! 

1 Thessalonians 5:16-18
Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.

Friday, November 4, 2011

What Nathan's Been Up To...

I promised pictures would come soon in my last post, so here they are! Enjoy!

These are from our beach vacation this past September:
Hanging out at the pool at the beach house !

Checking out the wild horses on the beach!

Sandy hands :o)

What's this gritty stuff mama?

Happy Nathan LOVED the beach!

Pontoon Captains! This was Nathan's first time on a boat!

Hanging out with daddy watching Mickey Mouse!

The weather was just beautiful on October 8th, I took Nathan down to the lake with his big truck! He had a blast pushing his truck around on the dock!

These were taken at the State Fair of Virginia in October:
Country boy Nathan.

Nathan LOVED all of the tractors!

Auntie Anne was making Nathan giggle!

Nathan and mommy playing at the house:

Nathan had just finished eating a banana... it was his first real food in several days, because he wasn't feeling well. This was a week and a half after we started him back on the Pulmicort slurry. 

Playing in a toy box!


Nathan dressed up as his favorite character, Mickey Mouse! Nathan had a great time at the Trunk or Treat at River Road Church!
Bean bag toss! Go Mickey!

Nathan loved playing with the balloons.

Mark has wanted a Radio Flyer for Nathan ever since the day Nathan was born. :o) We were shopping at Target last weekend and it was on a sale we couldn't say no to! Nathan was with us but wasn't paying to much attention to the big box and what was inside. That night after we put him to bed we put the wagon together so that he could be surprised in the morning! Needless to say he was super excited when he came downstairs to find his first wagon! We of course, had to test it out right away. It was a chilly morning, but we all bundled up and had a great stroll!

Big boy Nathan pulling the wagon like daddy!

Friday, October 28, 2011

Playing Catch Up...

Alright, so in the world of EoE as we have always known, things can change and they can change quickly. We were blessed to have such a smooth couple of months in a row with Nathan.

Shortly after my last post, which was on September 1, Nathan began coughing and lost his appetite. At first we chalked it up to being a cold, but when 4 weeks had gone by and it wasn't improving, so I decided to give Nathan's GI doctor a call. He suggested that we start Nathan back on the Pulmicort slurry once a day. This was a bit upsetting considering that he had been off it for nearly 12 weeks at this point and had been doing great until now. I knew that there was a chance that he would need to go back on it,  but had been so hopeful that avoiding the top 8 allergens would be all the treatment he would need.

It's a hard choice to make, either take away all of Nathan's food and feed him his EleCare formula only and stay off of the steroid, or put him back on the steroid so that he can have a handful of foods that he can eat without a reaction. Mark and I discussed it and we do want Nathan to eat food, so we are continuing with the steroid for now, although, it's such a frustrating feeling. I hate the thought that we may still be feeding Nathan foods that are hurting him, yet this steroid acts as a "band-aid" and keeps the inflammation down and symptoms at bay. But the thought of taking his food away from him again, is heartbreaking as well. Nathan LOVES to eat!

Nathan has been back on the steroid since October 5, his appetite returned after being on it for about 2 weeks, but his coughing has continued. It's not as bad as it once was, but it's still there. On October 19, I took Nathan in for his 18 month well visit ( 2 months late :o/ ) and Dr. Terry said that he heard a slight wheeze when listening to his lungs, so we started doing a combination of Xopenex and Pulmicort nebulizer breathing treatments with him once a  day since then. This has helped with his cough a bit, but it's all too much of a reminder of his chronic cough that he had before we had a diagnosis for him. So I am still worried that the Pulmicort steroid isn't quite doing the trick and something is still irritating him.

We have a follow up appointment with Dr. Williams on December 2 and I am imagining that if his coughing is still present we will be scheduling yet another scope and biopsy to see what things look like in his esophagus. Before I get too carried away with the what-if of what all that could tell us I will just be patient and wait for the appointment to see what Dr. Williams thinks.

Yesterday we finally had our Feeding Therapy evaluation appointment for Nathan at the Children's Hospital. It was a long 3.5 hour appointment, but we feel it was very informative. We met with a Nutritionist, Dietitian, Psychologist, Feeding/Speech Therapist, and their Nurse Practitioner. It was nothing short of overwhelming, but we felt that they truly have Nathan's best interest in mind and they also are very familiar with Eosinophilic Esophagitis, which makes me so happy! They all evaluated Nathan together and individually so that they could put their minds together on the best approach to help Nathan.

They determined that he has a very weak jaw and tongue, which is causing him to fatigue easily during meals, and stop chewing his food and start swallowing it whole. This is why Nathan chokes so easily on foods that we do not cut into small enough pieces. We have been shown some chewing exercises to work on with Nathan to help him get stronger and learn to chew with his back teeth, right now he uses his front teeth to chew and his tongue to mash food up on the roof of his mouth. We are hopeful that these exercises will help him become stronger so that he can chew food correctly. Along with the chewing exercises, we are to offer Nathan table food in small pieces first at meals, and as he shows signs of fatigue, take the table food away from him and offer pureed foods to him. They want us to do a minimum of 6 ounces of pureed food a day right now, while removing 6 ounces of his EleCare volume for the day. The goal is to get Nathan to get his calories and nutrition from food and not formula, it will be a slow process, but any progress is good progress with that. This is an exciting thought, as I had no idea when this time would come for us to try this, but at the same time it's scary because we know that if we need to remove food from his diet again due to high eosinophil counts on a biopsy, we will need to rely on the formula again for his nutrition. For this reason, we are certainly not finished with his g-tube, and that will remain in place for times when it's needed. We do not want to go through that surgery again!

Nathan working on his chewing exercises.
Unfortunately, the waiting list for weekly feeding therapy is 6-9 months from now. Mark and I will work with Nathan daily doing these chewing exercises 3 times a day before meals, until we can get him in to the weekly program at the Children's Hospital . They are also having the Early Intervention program for our state contact us, as they may be able to come to our home and begin working with Nathan now, instead of waiting 6-9 more months. We are praying that this will work out and be a good starting point in getting Nathan's chewing to improve.

Another concern is his speech, which they think is attributed to his weak jaw and tongue as well. Nathan's mouth and tongue can't do what they need to do to make the proper sounds to say some words correctly. They think these same exercises will improve this as well.

I apologize for the lack of posts here lately, I will work on keeping things more up to date on the blog. It's much easier for me to post as we go than to try to squeeze so much information into one post like I have done today.

We are headed to Mark's parent's church annual Trunk or Treat tonight, Nathan will be going as Mickey Mouse! I will be sure to post pictures in the next day or two!

Thursday, September 1, 2011

Results Are In...

Nathan's last scope biopsy results are in: ZERO eosinophils!!!

This is just plain amazing news! Nathan had been off of the Pulmicort slurry steroid for 7 weeks prior to this scope. This means that avoiding the top 8 allergens is working for Nathan right now and his eosinophilic esophagitis is being controlled by diet  alone at this point! From everything we have learned about EoE since this all began, we knew this could be possible, but that it would be a fairly small chance of it being the only treatment that he would need to control this. We know that it wouldn't be possible without God and all the prayers that each of you keeping up with our sweet Nathan have been feverishly praying! So please, keep sending those prayers up!

Nathan's food list is growing just about as quickly as he is! He has now passed, pears, green beans, squash, carrots, bananas, and raisins! We have moved to a meat finally and Nathan has been enjoying chicken for a little over a week now! So far, so good, and we are praying that it will continue so that he can keep eating it! We will be following up with Dr. Williams (GI) in October to assess how things are going, unless we notice Nathan having a problem with something before then.

Nathan's EoE buddy, Tyler in Arizona, had his scope the Monday following Nathan's. Unfortunately, his esophagus didn't look too good this time. He has been eating very few foods, hardly showing an interest in eating actually, and drinking/being tube fed EleCare. You can read about his story here. I have been in close contact with his mom Julia, and we have become very close these last 2 months! Thank goodness for cell phones, texting, and Facebook! :o) It has been more than comforting being able to share this journey with someone else who knows first hand what life is like dealing with a limited diet, EleCare, g-tubes, feeding pumps that go beep all night long, and soaking wet crib sheets and baby boys when things become disconnected in the middle of the night.

Another friend of mine that I know from high school, her son was just scoped this past Thursday by Dr. Williams in search for EoE. Biopsy results aren't back yet, but visually according to Dr. Williams, he has classic EoE signs. It's heartbreaking to learn of another child being diagnosed with this! I dislike that he may possibly have this doggone disease, but I am so thankful to be able to offer her understanding and support. I guess the silver lining is starting to show through in all of this craziness for me! I would have loved knowing someone at the time of Nathan's diagnosis, it would have made it feel so much less of a lonely place to be. I feel blessed that I may get to be that person for someone else.

Thanks to everyone who reads this blog and for all of your love and prayers sent our way! Please add these other two precious boys to your prayers as well! 

Wednesday, August 17, 2011

Trooper Nathan...

Nathan had his third scope with biopsies done today and also go this PEG tube switched out to the AMT Mini One Balloon Button. He did great! Thanks to the many prayers being sent our way today! Dr. Williams said that his esophagus looked good, so we are hopeful that the biopsies will second that. This will be excellent news which may mean that avoiding the top 8 allergens will allow Nathan to be symptom free! That is still a challenging diet to follow, but so much better than having him take a steroid just so he can tolerate his food.

We are so excited about the AMT button!!! We can already tell that it is going to be so much better than his PEG tube! It's so nice not having a tube constantly dangling from his tummy. Hooking him up for his feed tonight went smoothly! 

 I will post about the biopsy results when we hear from the doctor, hopefully no later than Monday. At that point we will be scheduling an appointment with Dr. Irani, Nathan's Allergist, to determine which foods may be good to trial next. It is so exciting knowing that there is such great hope that Nathan will be able to manage his EE by diet and not steroids. Please continue to pray for this as we have learned from many others that what works for a while may not always work.

Here are some photos from our day, enjoy!

Such a patient patient, waiting to be called back.

Sleepy Nathan in the recovery room.

Buckled in and ready to head home.

Nathan's new tummy!

Nathan checking it out for the first time.

All hooked up for his first feed! It went great!

Sunday, July 31, 2011

No News Is Good News...

That's always been my philosophy, at least. It's my excuse for not being very good about posting these days.

Nathan is doing well and drinking his EleCare like a champ these days, we haven't used his g-tube for a feeding for almost one whole week now! It's exciting, but at the same time a strange feeling because we were relying so heavily on his feeding tube not too long ago to get those precious calories in him. We are thankful he is so eager to drink on his own these days, but this does not mean we can get rid of the g-tube just yet. He is scheduled for his next scope on August 17 and he will also have the PEG tube switched to the AMT Mini One balloon button that day. We are praying that Nathan will continue to take all of his nutrition by mouth, but know that at any time he could revert back to his old ways and not feel like eating, so it is important for the feeding tube to remain for future times like that.

We started giving him raisins this past week, he LOVES them! It's nice to finally have an easy snack that I don't have to cook, chop, and prepare for him to eat it. It's also great since I can just throw a few boxes in the diaper bag when we are out and not worry about keeping them cold like I have to for his other foods! I sure hope that he doesn't have a reaction to them down the road, because this is truly his first "favorite" that we can tell, and he would be heartbroken if we ever had to take them away.

I was just thinking the other day that it's been about 5 weeks since we've taken Nathan to the doctor for a sick visit. This is a record since he started getting sick last September! We are hoping that this continues and that we can start visiting the doctor for well visits and routine checkups with his allergist and gi doctor only. :o) I am going to call the pediatricians office tomorrow to schedule his 18 month well visit with Dr. Terry for August. I can't believe that our sweet baby is almost 18 months old!!! He is getting so big and we are so proud of him!
Nathan sleeping with his big boy pillow!

Sunday, July 17, 2011

We're Still Here...

Our little family! 
I apologize it's been so long since my last post. Life has been busy... those of you that currently have or have had a child the age of 16 months should know the kind of busy I'm talking about. Last week was an extremely crazy week filled with dentist appointments, routine car maintenance, working, going to the storage unit to hunt for beach paraphernalia, and packing for our weekend get away in celebration of Mark's birthday!

On top of all this our sweet Nathan, has matured a bit in the way of him thinking he knows what he wants/needs better than his mommy or daddy does. Nathan has become super independent when we are out and if we try to lead him one way and he doesn't want to go, he makes sure to tell the whole store or where ever we are that we are crazy parents who don't have a clue. Occasionally, he will follow the screaming with kneeling down on the floor with his head down and bottom up crying like we are just the worst parents ever. Mark and I knew this time was coming, we were just hoping it would be closer to the age of two? Hmm... maybe since the "terrible twos" have visited us a bit early he will be back to his angelic self by the time he is two? Ha... I'm sure that's a crazy idea! All jokes aside, he is still our wonderful, sweet Nathan and we love him just the same! It's just one of many phases we will go through in this amazing journey called parenthood. 

Mark and Nathan
On Friday, we headed down to the Outer Banks for a quick, spur of the moment trip we only booked the week before for Mark's 40th birthday! We had the wonderful pleasure of watching Nathan's wonderment when he saw the beach and ocean for the first time in his life. Of course, he won't remember it, but we've got plenty of pictures to show him as we tell him the story one day! Nathan wasn't sure about the ocean at first, but he quickly learned to love it and it was hard keeping him out of it! It was a much needed break from reality, and  an exciting preview of our full week-long vacation we are going on in September with some of our dearest friends! We may have to rent a U-haul for that trip, as our car was loaded to the max for this quick two-night trip. You could tell that we were first-timers going away with a child with all that we packed, not to mention all of the extra medical "stuff" that Nathan requires and the fact that I felt the need to bring extras of extras just in case. In the end, I ridiculously over packed, but knowing myself I will do just the same come September's vacation.

Kill Devil Hills, Outer Banks, NC
Nathan has been off of the Pulmicort slurry for a little over a week now. He seems okay most of the time, but we have noticed him coughing occasionally throughout the day over the last few days. He is even gagging a bit more on foods these last few days two. We aren't shocked, as we knew he could regress once the steroid was removed, we were just hoping that he wouldn't. We wont know for sure until August 17th when he undergoes his third endoscopy and biopsy. Right now that seems like an eternity... last night something scary happened while he was sleeping, he woke up crying and then he started 

Dana and Nathan
coughing/gagging/choking all at once, we just knew he was going to vomit, but amazingly he didn't. I had my hand on his stomach and it felt like it was doing flips in his little tummy. I immediately turned his feeding pump off and disconnected it, my worst fear was that his stomach wasn't emptying properly and that he was refluxing and choking on his EleCare in his sleep. He settled fairly quickly and went back to sleep, although I can't say the same, I just laid there and listened to make sure he was okay for the longest time. He still had 10 ounces of EleCare left in his bag, which is a huge portion of his calories for the day, but I just tossed it, as I couldn't bring myself to go through that again.

When he got up this morning he seemed fine and drank his EleCare like normal, he even ate half of a whole banana for breakfast, that I cut up into very small pieces for him, as he still isn't chewing his food well at all. He did great all day, no more weird episodes of choking, until we put him to bed. He was asleep for almost an hour when it happened and he was not hooked up to his pump, so I can't blame that this time. He hadn't had anything to eat for a good hour to hour and a half before we put him to bed. But the same exact thing happened as the night before. Dr. Williams did say that reflux is a very common problem after having a g-tube placed, but I would have thought it would have shown up before now, plus this just seems too scary when it's going on to just be reflux. I am really thinking that he's reacting to something we are feeding him and this may just be the beginning sign of it... only time will tell and we will just wait to see what happens for now. Tonight he had 200ml remaining and I just hooked him up before beginning this post, we slowed the flow rate from 50ml/hour to 30ml/hour to see if that makes a difference. I'm not sure if it will since he did it tonight without being hooked up to his pump. So here's to another day in the life of dealing with EoE and I'm off to bed to lie awake and listen out for every little noise Nathan makes tonight, I swear I feel like I did the very first night we brought him home from the hospital jumping at every little peep he makes.
Beach bum Nathan
Daddy's boy!

Wednesday, July 6, 2011

G-tube Follow Up Appointment & The 4th of July...

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!