Wednesday, April 27, 2011

Allergy Testing...

58 pricks and 15 minutes of waiting is what it took to tell us that Nathan's only "immediate-response" allergy is PEANUTS! Nathan didn't like it, but calmed quickly once they were finished pricking him.

It is a wonderful blessing to learn that Nathan doesn't have a long list of typical food allergies, as that would only further complicate things in trying to find him safe foods. As if it isn't already complicated enough. However, it's not exactly helpful in telling us what makes his EE worse. He never ate peanuts a day in his life, so we know that they weren't the culprit in irritating his esophagus. I kinda feel like we are back at square one with figuring all this EE stuff out. It's highly possible that some of the things Nathan was tested for today are in fact irritating his esophagus, but there just aren't any standardized testing methods to test for "delayed allergic responses", which are how EE operates.

The only avenue we have at this point is to continue food trials and see how things go and continue giving Nathan his Pulmicort mixed with Splenda once a day. Pears have worked now for two weeks which is encouraging. We will try a new fruit for two weeks at a time until his next endoscopy/biopsy the beginning of June. Dr. Irani feels that Nathan will have many food options if he stays on this medication, but it is a steroid and they aren't good to be on for long time periods. If we chose to take Nathan off of the Pulmicort, he would likely only be able to consume his EleCare formula. Talk about being between a rock and a hard place. A cure for this can't come soon enough... it just doesn't make sense that the only way our child can tolerate foods is to take a steroid for this entire life! I can't even begin to describe how frustrating this is!

For now we will see how that apples go, and hang in there the best we can. I know this will get easier at some point and I thought we were getting there. But today's visit with Dr. Irani sends us back to the reality of EE and how difficult it is to treat and that has knocked me back a bit.

Tuesday, April 26, 2011

Exciting Day...

I woke up this morning to Nathan standing in his crib staring at me with a long yellow NG tube hanging down from his cheek to his belly.... it finally happened, Nathan pulled his feeding tube out. Luckily, we already had an 11:30am follow up appointment with Dr. Williams today, Nathan's GI doctor. Dr. Williams was so pleased with Nathan's weight gain (he's up to 23lbs!)that he felt we could leave the tube out and re-assess his weight in 4 weeks to see whether or not he would need the NG tube again. We are praying for good news when we go back! Also, Dr. Williams said that when we see him in 4 weeks, he wants to go ahead and schedule Nathan's next endoscopy and biopsy for early June. Now that I know that, I am scared at the thought of Nathan being under anesthesia again but anxious to learn what his little esophagus looks like since we have been treating his EE.

Today was somewhat discouraging as Nathan only had 23 ounces of his EleCare and one jar of pears. So tonight I am wishing he still had it in so that we could give him 9 more ounces. As much as Mark and I hated him having a feeding tube, it gave us peace of mind on days like today, knowing that no matter how little he took on his own, we had the ability to give him the rest while he slept. It's hard going to sleep at night knowing your child hasn't eaten enough food/calories for the day and there is no way to get them in them. I hate obsessing over each and every little drop of EleCare. I look forward to the day that I don't feel like I have to do that anymore.

Tomorrow we have an appointment with Dr. Irani, Nathan's allergist. We will finally be able to get his allergy testing done! I am anxious to see the results even though I know it's not going to unlock many answers in helping treat Nathan's EE. It will be able to tell us definite things to stay away from, but it wont really help with what to try next. From what I've researched it sometimes comes back with no positive allergies, and you are right back to square one. As the allergies related to EE tend to be delayed over day, weeks, or months, and the test checks for immediate reactions. Food trails seem to be the best bet when finding foods that are safe for EE sufferers, yet they are time consuming and frustrating when something turns up to be an allergy. We are praying for patience as we continue with the food trials.

Here is our sweet boy and his sweet cheeks free from his feeding tube:

I was so happy to see his entire sweet face today, that I decided to do a random photshoot at the lake near our house with him.

Here are a few of my favorites:

Thursday, April 21, 2011

32 ounces...

Nathan drank all 32 ounces of his EleCare on his own today! :o) So proud of our baby boy!

Tuesday, April 19, 2011

Angie's Visit & A Visit From An Angel...

Nathan's home health nurse, Angie, with Kidz Kare at Home, came by this afternoon. By the way, she is amazingly wonderful. :o) Nathan has gained 6 ounces in the last 5 days... AMAZING!!! :o) I had the lovely pleasure of removing Nathan's old NG tube so we could switch sides to give his cheek a break from all of the tape. I told Angie, that I want to do as much as I can myself, so that I will be comfortable handling this NG tube 100%. Surprisingly, after the tape was removed, his cheek was just as beautiful as it always was, a bit red, but that faded in a matter of hours. Angie, put the new NG tube in on the other side explaining everything along the way. It wasn't a pleasant experience, but it wasn't the worst either (for me, at least). Nathan did cry, but he sat there and took it like a big boy, I didn't have to hold him with the super mommy grip, that I was preparing myself for. After the new NG tube was in and taped, Nathan calmed down and went back to business as usual... playing and dancing to Mickey Mouse. :o)

Mark and I were hoping for the possibility of leaving the NG tube out, but Angie explained that even if Nathan eats 2 jars of pears during the day, he still needs all of the nutrients from his 32 ounces of EleCare right now. She said that it's important for Nathan to gain weight, so that once the tube comes out for good, he will have some extra weight on him in case he happens to drop of few ounces then. That makes sense to us, so we will keep on doing what we are doing. So, if Nathan drinks 30 ounces in one day, that's great and exciting, but we will need to give him the remaining 2 through his tube. We are on board with this way of thinking now, because we want to do all that we can to help Nathan out with gaining weight.

Nathan's new NG tube:

Earlier today, I surprised my dad, (Nathan's GP) with a visit at his work. We went out to lunch at Jason's Deli... yumm! As we were leaving dad was carrying Nathan out and I was behind them. A man I will never forget wearing a blue button down shirt and khaki pants stopped me. He said, "Can I pray for your son?" I said yes, thinking he would just turn around and pray for him. The man asked what Nathan's name was and I told him, "Nathan". I gave him a 15 second run down on why Nathan had a feeding tube. The man then turned and followed my dad outside, and I was right behind him. I called out to my dad so that he would turn around. The man never sad his name, just that he wanted to pray for Nathan. He put his hand on Nathan's back as my dad held him and prayed. I have never been so touched by a stranger in my life. We thanked him graciously, but probably not as graciously as he deserved, and as quickly as the man came he left. I can't believe the kindness that was shown, as most people tend to just look and stare at Nathan and his NG tube when we go out. Yet, here was a man I didn't even notice looking our way during our entire lunch, and he wanted to pray for Nathan and for him to get better. I am convinced that there are angels that walk this Earth every day, and I am convinced that we met one today.

Finally Caught Up...

This morning I finally got my internet working on our desktop, which holds all our pictures. Please look back a few days to see pictures that I've added to the posts. As well as a new post or two I snuck in. :o) Have a wonderful day!

Monday, April 18, 2011

So Exhausted, But So Worth It...

Let me begin by telling you a bit about my crazy schedule from yesterday leading in to today. I woke up at 8am yesterday morning. (Thanks to Nathan letting me sleep in that late!)Mark, Nathan, and I ran errands, to include going to Target and purchasing half of the store... I LOVE Target! :o) When we got home from all our running around we were all tired, so we all napped. I slept from about 3:15pm to 4:30pm, normally I wouldn't complain about that, however, it's never a good thing for me to sleep that early in the day on Sunday, as I have to go in to work at 10:00pm Sunday night until 6:30am Monday morning. Usually, I try not to lay down until 4ish, and sleep until 8:30pm. It's still not a lot of sleep, but it's hard to sleep much longer than that as it's the only night of the week I work overnight. So basically, by the time I left work this morning at 6:30am I'd been up 22.5 hours.

When I arrived home this morning at 7am, Nathan was still asleep, so I quickly changed clothes and snuggled up on the couch to get quick nap in before he woke. That lasted about 30 minutes. Nathan and I played until 9:45am when it was finally his nap time. (Thank goodness for morning naptime!) He had consumed nine ounces of EleCare by this point! I was so happy to be off to such a good start today! We both napped until 12pm. :o) When Nathan got up, he drank six more ounces of his EleCare! WOW! I thought, 15 ounces and it's barely lunchtime! So, again, we played and read books, then I decided I've got to get myself together to run a few errands before too much more of the day got away from me! It was near 1:30pm when I was finally decent enough to go out in public, I decided to offer Nathan some more EleCare before heading out, and he drank four more ounces, plus and entire six ounce jar of pears! I feel like I've got my old Nathan back along with his appetite too, I thought to myself! So we go out and about and return home around 3:30pm, how convenient... it's afternoon nap time! Nathan takes one more ounce of his EleCare before laying down, a bit discouraging after how he drank this morning, but I reminded myself that one ounce at a time all adds up. I slept until 4:30pm when Mark called to tell me he was on the way home from work. I quickly prepped some things for dinner before waking Nathan up at 5pm. He drank 3 more ounces and ate 1/2 jar of pears. At 6:05pm, Nathan had 2 more ounces, and right before bed he ate the remaining 1/2 of his jar of pears.

Nathan's total for the day at this point was 25 ounces and 2 jars of pears. I was happy about this, but I began having second thoughts of should we do a 7oz. feeding over night tonight? He really is supposed to have a total of 32oz. of his EleCare through out the day. Was it wrong of me to be so happy about him drinking so well yesterday (26oz.) and not give him the remaining 6oz. while he slept, justifying it because he had 200 calories worth of pears that day also? So tonight, even knowing he had, again, 2 jars of pears totaling an additional 200 calories, I decided... he needs to hit his 32oz. of EleCare for the day, I will give him a feeding of 7 more ounces over 4 hours tonight. So we put Nathan down at 7pm, and he's wide awake... I decided to let him play in his crib for a bit and fall asleep before hooking him up, as the tubing connected to the feeding pump on the IV pole has become somewhat of a fun thing for him to play with, to the point of pulling the IV pole over. Fun for Nathan, obnoxious for mommy and daddy. All I can think about it crawling in the bed and going to sleep, but alas I decided to work on laundry while waiting for Nathan to fall asleep. At 7:45pm, he was finally quiet. (He had been having full on conversations with his stuffed animals up until that point.) I go in his room to find him lying down, but still wide awake, I decided to go ahead and hook him up and start his feeding because this mama was tired and ready for bed herself! Needless to say, it was a bad idea... I fought with him and the IV pole and the pump alarming because he wouldn't stop playing with the tubing... at 8:30pm I turned it off and said heck with the last 7 ounces today! It's not worth this struggle tonight being as exhausted as I was. So I go to bed. That lasted all of 5 minutes before Nathan began crying. So I got up and took him downstairs, I thought, maybe he's hungry...hmm.. how ironic, I'd been fighting to feed him via his NG tube for the past hour almost and he was going to have nothing to do with it. So we go downstairs and I offer him his cup... he eagerly drinks 5 more ounces!! Yes, that's right... Nathan drank 30 ounces of his EleCare and ate two jars of pears today!

We are still downstairs 45 minutes later so he could play a bit more and I could write this horrifically long blog post. He just rubbed his eyes, better get him back to bed, and I'm going to be right behind him! Oh yeah... and HECK with those last two ounces for today! :o)

I'll take a day with no rest after being awake for 22.5 hours if it means Nathan drinks 30 ounces of EleCare in one day for sure!

Sunday, April 17, 2011

Best Day Ever...

Nathan managed to squeeze in 2 more ounces of his EleCare before going to bed tonight! Bringing his total for the day to 26 ounces, plus 2 jars of pears! This means no overnight feeding tonight for sure! We are praying for another good day tomorrow, if so, when the home health nurse comes out on Tuesday this week, when we pull Nathan's NG tube to switch sides, I think I will tell her to just leave it out. If for some reason he starts going backwards later on in the week, she is only a phone call away to have her come out to the house and put it back in. Which I am hoping we won't have to do, but it's nice knowing that it won't be a big deal to put it in again if need be. :o) So proud of our tough little cookie!

p.s. So sorry for the lack of photos lately... my computer that has all of the pics on it is acting up, I'll get them posted soon!

What A Wonderful Day...

Nathan has had 24oz. of his EleCare by mouth today as of 6:30pm, plus 2 jars of pears @ 100cal each! That means no feeding overnight tonight!! What a happy day!!

Saturday, April 16, 2011

A Fun Day...

Today, Nathan and I went to the new Children's Museum of Richmond, in Short Pump with my friend, Kat, and her daughter Brooke. We had a blast! Mark had to work today, so he missed out on all the fun. :o( I can't wait to go back when Mark can go with us!

Friday, April 15, 2011

Awesome Reminder...

21 ounces...

Today was my first day back to work since Nathan got his NG tube. Therfore, it was his first day back to daycare. (If you can call him being there from 2:45pm-6:15pm a day.) I felt as if I was leaving a 6 week old baby for the first time when I left him. I knew he would be fine, but it's just the feeling that I'm not the one watching him and making sure his NG tube is safe.

Everyone at the daycare has been so wonderful with Nathan through all of this. They have accomodated every request that we've had in trying to figure all of this out for Nathan. We could not ask for better people to be caring for our child while we are at work!

Of course, I couldn't wait much more than an hour after leaving him before calling to check in on him to makre sure he was doing well, and that his tube hadn't gone anywhere. :o) They said he was doing great and had 5 of the 8 ounces of EleCare I sent for him to drink. That made me so happy, knowing that brought his total for the day up to 18 ounces! His best day in a while! :o)

I talked to Mark once he and Nathan got home and Mark told me that Nathan had taken the last 3 ounces of his EleCare before he left daycare! I could have done a cartwheel! Nathan drank 21 ounces by mouth today! Woohoo! :o) This was great news because I was a bit discouraged yesterday afternoon when Nathan wouldn't drink and I had to give him a bolus feeding via his tube. It's a strange feeling feeding your child through a tube with a feeding pump while he is asleep... it's an even stranger feeling feeding your child through a feeding tube with a giant syringe connected to the tube taped on his back while he sits in his highchair watching Mickey Mouse Clubhouse. Thinking about the nutrition he was getting helped make it better for me though.

Another great tidbit of the day, is that the home health nurse, Angie, came back out today to do a weight check on Nathan. He's gained 2 ounces in the last 2 days! That means Nathan is finally getting the calories his body needs to grow again!

Praying for a repeat of today tomorrow! :o)

Tuesday, April 12, 2011

Our New Normal...

So Mark and I survived our first night getting Nathan to bed and connected to his feeding pump. Just to give you an idea, here is what our new bedtime ritual will look like for now.
Nathan's total daily amount of EleCare per day is 32oz. He only consumed 15oz. by mouth throughout the day, so that meant we needed to prepare 17oz. for him tonight to run from 8pm -6am. Once the formula is mixed, it can only be hung in room temperature for 4 hours at a time, that being said we can only hang 200ml at a time. (It takes 4 hours to give him 200ml at 50ml/hour.) Yes, we will be waking up every four hours to add fresh formula to the pump. We took Nathan upstairs and Mark primed the pump while I changed Nathan's diaper, only to realize it had leaked onto his onesie. So I had to untape the feeding tube from his onesie and clean him up before putting on his jammies and re-taping the feeding tube to his jammies on his back. Apparently, once you prime the pump you only have a certain very short time frame before the pump begins yelling, okay, beeping loudly at you and telling you to hit "run", and I was too slow for that due to being overly mindful of Nathan's NG tube. Next, we sit Nathan up on the changing table and listen to his stomach with a stethoscope while putting a small amount of air in the tube to verify the NG tube placement. It's not as easy as it sounds when Nathan is busy trying to fly like Super Man off of the table. :o) Thankfully, I remembered to crimp the tube before uncapping it to attach the syringe, gastric juices on fresh jammies would have made me cry. Finally, we are ready to hook Nathan up to the pump. Success! Well, I must add that I put an additional minimum of a half roll of tape to his nose and cheek to make sure that tube wouldn't be going anywhere tonight. I may have even taped his left eye shut. :o) It sounds better reading it on here, but honestly, it was about a 45 minute not so smooth endeavor. I am sure we will be pros at it before we know it, and the every 4 hour wake up call will become routine as well.
The home health nurse that came out today was wonderful! She will be back out Thursday morning to weigh Nathan to make sure he is gaining weight. After that she will just come once a week, or as needed if we need help re-inserting Nathan's NG tube. She said that Nathan should be gaining one half to one ounce per day.

I'm sure I've got much more to share, but I am zonked and need to get some sleep. After all, 11pm will come quickly when Nathan's pump is due for it's refill. :o)

Monday, April 11, 2011

Finally Home...

Nathan was very happy to be home!

One More Night...

Nathan's GI doctor, Dr. Williams, came in to see him today, he is going to contact Dr. Irani, Nathan's allergist, to develop a plan for Nathan, and hopes to discharge him sometime tomorrow.

So not ready to take on this feeding tube at home right now... I pray that once we get home with it, it stays put so this mommy doesn't have to put it back in! Yipes! They haven't instructed us with it yet, I am hoping to feel better about it once I learn more.

Nathan is hanging in there... he has taken 11oz. of the EleCare formula in by mouth so far today... still not great since it's 3:30pm, but that's what this feeding tube is for, he will get a continuous feeding overnight tonight from 8pm-6am.

I am so looking forward to Mark getting here tonight after work... I have a hard enough time keeping Nathan entertained at home and not going on any outings during the day. It's been super difficult entertaining him here. They do have a nice playroom where we went for a bit this morning where they have what appears to be thousands of toys... Nathan loved it, but I wasn't a fan... I had only a hundred or so toys to put away when he was done. :o) Not to mention all of the germs all over them I couldn't get out of my mind! A friend from high school's son was here just down the hall from us.. he is only 5 months older than Nathan so it was nice to have a friend for him to play with for a bit! :o)

Not So Sweet Dreams...

Nathan's first night with his NG tube was/is a success, if you can even call anything related to being fed through a tube that. He slept "like a baby", just like he always has.

I can't say the same for myself... I didn't even lay down until close to midnight and I am now wide awake and it's barely 4:30am. I kept waking up every 45 minutes or so almost as if I was trying to wake up from a really bad dream. However, each time I awoke to realize that this is not a bad dream... it's our real-life playing over in my head. I'm not going to lie, this is most awful, terrible, horrible, painful, experience I have ever been through. I wouldn't be human if I weren't having those feelings, or even a mother for that matter. It's amazing how quickly life can change from a child who is the picture of health to a child who is sick, yet doesn't look sick, to a child who still doesn't quite look sick, but has this NG tube taped to his face, which I'm pretty sure makes him look sick now, and will create stares, comments, and ridiculous questions from people who lack understanding of what it feels like to have a child who has a disease that there is currently no cure for. I pray that Mark and I will find patience in these circumstances and try really hard to remember, there is no way they could understand if they haven't walked where we are walking now, and I pray no parent or child has to go through anything like we are going through ever!

I apologize for the no so positive post this morning, yet, I've been very positive through all of this so far, minus a couple of bad days here recently, and I told myself when I began this blog I wouldn't write about those times... then I thought about it. I wanted to create this blog as a source of information to keep family and friends updated on how Nathan is doing. But, I also wanted to write this blog so that another family going through this same struggle could have insight on our experience in hopes that it will be a source of encouragement to them to know that they are not alone and to be matter-of-fact so that they can know what to expect along the way.

I have met some wonderful mothers of children with eosinophilic disorders by this blog and on Facebook as well. They have been a huge part in me keeping my chin up on most days since receiving this diagnosis for Nathan. They completely understand what it's like to be told to take food away from their child, knowing that their child is hungry and would probably eat anything you put in front of them. But you can't cheat and sneak something to them because you don't know what foods are hurting them and you don't want to make your child hurt because you fed them something. They know what it's like to battle with getting their child to drink enough special formula every day to make sure their child will continue to thrive. Some of them also know what it's like to have an NG tube placed in their child and the awful feeling that comes when you watch your child being fed that way. Many understand even worse than Mark and I do right now too, like having a surgical procedure performed on their child to place a more permanent feeding tube called a G-tube or a J-tube. They even understand what it's like to finally find a few safe foods for their child to eat just to find out that their latest endoscopy and biopsies showed damage to the esophagus and they must now take away all foods and start from square one all over again.

The best advice I've gotten is to take it one day at a time. When I start thinking about all of the unknowns in Nathan's future it's upsetting. Like, will he ever be able to enjoy another homemade birthday cake created my his mommy? Or, is our little family ever going to be able to sit down to dinner together and have a meal? I can't waste my time and energy thinking about things like that right now. But if I just think about the things I need to do to get us through one more day it's not so overwhelming anymore. I can't promise I wont have anymore days where I want to kick and scream out of frustration, but I will do my best to take it one day at a time, so I can have fun and enjoy life with our precious baby boy each and every day!

One Day at a Time
One day at a time, with its failures and fears,
With its hurts and mistakes, with its weakness and tears,
With its portion of pain and its burden of care;
One day at a time we must meet and must bear.

One day at a time to be patient and strong,
To be calm under trial and sweet under wrong;
Then its toiling shall pass and its sorrow shall cease;
It shall darken and die, and the night shall bring peace.

One day at a time - but the day is so long,
And the heart is not brave, and the soul is not strong,
O Thou pitiful Christ, be Thou near all the way;
Give courage and patience and strength for the day.

Swift cometh His answer, so clear and so sweet;
"Yea, I will be with thee, thy troubles to meet;
I will not forget thee, nor fail thee, nor grieve;
I will not forsake thee; I never will leave."

Not yesterday's load we are called on to bear,
Nor the morrow's uncertain and shadowy care;
Why should we look forward or back with dismay?
Our needs, as our mercies, are but for the day.

One day at a time, and the day is His day;
He hath numbered its hours, though they haste or delay.
His grace is sufficient; we walk not alone;
As the day, so the strength that He giveth His own.

Annie Johnson Flint

Deut. 33:25 ...and as thy days, so shall thy strength be.

2Cor. 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.

Sweet Dreams...

Finally asleep, while his formula pumps away! Goodnight all! :o)

Sunday, April 10, 2011

Such a Tough Guy...

Nathan did great getting his NG tube... fought it a bit, but who wouldn't!? Once they brought him back to us he settled quicker than I thought he would. :o) They just started his feeding about 20 minutes ago, he is tolerating that fine, I'm just worried about him playing with the tube and pulling the connection apart while I am sleeping tonight... the feeding will continue overnight until 630am. It breaks my heart to look at him and watch his "food" flowing through a tube taped in a swirl on his back crawling over his shoulder and up in to his nose. But at the same time I remind myself that he is receiving the nutrition he needs to grow and that takes a bit of the sting away.

Before we leave the hospital they will pull his NG tube out so that they can show us how to put it back in and check for placement of it to make sure it's in is stomach and not in his lungs. A place we definitely don't want to be putting his formula! This is certainly not something I ever thought I would need to learn to do... especially on my own child. But like all things we go through in life, this will become our new normal for us and it will be second nature before we know it.

Most of his blood work came back already, and it's all normal so far except for his iron levels, they are low and have been since he was diagnosed with strep throat a couple of weeks ago. Looking back at his records, his iron has always been on the low end of normal, but still in the normal range nonetheless. We are thinking it's due to his lack of nutrition over these last few months and are hoping it will return to the normal range once these tube feedings are well established.

I can hear Nathan playing in his crib talking to his friends, Curious George and Scout behind the curtain right now. I hope he falls asleep soon, it's way past his bedtime it's after 9pm! He took a late nap and was awakened to have his tube put in... maybe he's afraid to sleep, because he doesn't know what he will be waking up to? At least he's happy for the moment and hopefully, I can close my eyes here soon and get some much needed rest myself.

NG Tube...

Wow... totally not prepared for this day to come this soon. We are st St. Mary's waiting for 8pm to come along. That's when they've decided to put Nathan's NG tube in and begin his continuous feeding overnight tonight. He's just refusing to drink his EleCare, they tried Neocate as a last resort, and he wont drink that either. He's even refusing water.

Mark and I have talked and honestly it's been a constant battle that's been getting harder as these last few days have gone by trying to get Nathan to drink the amount of EleCare that his body needs to thrive. As hard as this decision was on us, we know it will give us peace of mind knowing that Nathan is finally getting the nutrition his body needs to grow. We are ready for this next step, because we know it's bringing us just one step closer to finding a food that our little boy can eat that won't hurt him.

Right now this is planned to be a temporary thing, at least lasting over the next three weeks until we can get his allergy testing completed and get his appetite where back to where he wants to drink.

It's been a long and exhausting day trying to keep a curious 13 month old entertained in the hospital room, he's finally asleep for the moment. I apologize for how poorly put together this post is and for any grammar or spelling errors.

Thanks for the love, prayers, thoughts, and well wishes! They mean so much!

Friday, April 8, 2011

Many Thanks...

Just wanted to say a quick, "THANK YOU!" to all of the EE mom's who have reached out to me via this blog and on FaceBook! It is so nice to feel so cared about and by "strangers" nonetheless. Although, I now consider many of you our new EE family! I can't tell you the comfort I have felt knowing that we are not alone in this battle for our son! To hear advice and tips about the doctor's appointments to even just something as simple as, "take it one day at a time". It means a lot and I wanted you all to know that! Thanks for the story sharing and encouragement! :o)

Thursday, April 7, 2011

Back to Square One...

Dr. Irani wants us to resume the elemental diet, and cancel the food trial for now. She will re-assess things when we go back to see her in three weeks to do the allergy testing. It's possible that his esophagus still hasn't healed completely, and that is what caused the broccoli to come back up... or he's allergic to broccoli? Arrgghh!

I'm sure I'm not the first mother of a child with EE to say it, but a cure for this can't come soon enough, and if a cure is asking too much, a more reliable treatment plan would be good for sure! I know there are people out there right now researching and doing the best that they can with this, so patience is what we will have to practice!

I'm reminded of Romans 5: 3 We also have joy with our troubles, because we know that these troubles produce patience. 4 And patience produces character, and character produces hope. 5 And this hope will never disappoint us, because God has poured out his love to fill our hearts.

I will be reminding myself of this often these next few weeks, there is good in everything God plans for us even when we cannot see it.

Wednesday, April 6, 2011

One Hour and Twenty Minutes...

That's how long Nathan's tummy could handle the broccoli. :o( I guess we can add that one to his list of foods he can't tolerate. At least we didn't waste a whole week trying it on him. I am, however, very puzzled at how quickly he reacted to it. This is just the beginning of us learning how frustrating EE can be. We are praying for patience to overwhelm us as we tread on through these food trials. I can already see it's going to be a long and not so easy journey. I am going to call Dr. Irani tomorrow. We don't know if we should try another food tomorrow, or if we need to give him a few days for is esophagus/tummy to settle.

By the way, I forgot to include this in my post earlier about the visit with Dr. Irani. In order for a diagnosis of EE to be made the biopsy results must show 15 to 20 eosinophils on a single high powered microscopic field. Dr. Irani told us today that Nathan had 70+ eosinophils in each of the three areas of his esophagus that were biopsied. And that was after being on EleCare for almost a whole week, which she is certain that helped reduce his numbers prior to the biopsy! That really put it in to perspective for me, Nathan doesn't just "kind of" have EE, he most definitely has EE. I know that there is no thing as "kind of" having EE, but as a mother, I was just having wishful thinking that things were on the minor end of the spectrum.

Week 1 Food Trial: Broccoli...

The broccoli was a success, for now of course. We are praying we will be saying the same thing a week from now! Allergies connected with EE are delayed responses so only time will tell if it's truly a success. But for now we will eat broccoli morning, noon, and night, and we will love it!

Allergist Appointment with Dr. Irani...

We went to see Dr. Irani, an allergist who specializes in EE, this morning. We loved her! Unfortunately, we weren't able to to the allergy testing because of the cough medicine, Hydroxyz, that Nathan has been on over the last week prescribed by his pediatrician is an antihistamine. I was upset about this at first, but after speaking with Dr. Irani about the treatment of EE, it seems that allergy testing although always done, isn't very useful at times. She took some cells from way up high in his nose to determine if his constant congestion was due to chronic sinusitis or the eosinophils. Thankfully, there were no eosinophils, pointing to chronic sinusitis. She prescribed a 3 week course of antibiotics to try and get rid of it!

We will see her in 3 weeks to do the allergy testing. For now, she recommended that we keep Nathan on the EleCare and stay away from the 8 most common allergy related foods, dairy, egg, wheat, soy, peanuts, tree nuts, fish and shellfish. Dr. Irani wants us to start with fruits and veggies first since they are the least likely to cause an allergy. One at a time, for a week at a time. This is a very restricted diet for anyone to follow, but it's so much better than no food at all! We are going to start with broccoli this week! She also reduced the dose of his Pulmicort that he is on to 1mg once per day. This makes me happy because, the least amount in my mind, the better in the long run. The side effects of Pulmicort when being inhaled is well known, however, the side affects when swallowing it aren't so clear, since it isn't an approved use for the drug at this time. Our goal for Nathan is to get him off of the steroid and control his EE by diet alone, if his body will allow. Dr. Irani is very well educated of this disease, yet she was very honest about how little is known about it at the same time. Currently, there is no cure for Eosinophilic Esophagitis, and this will be a life-long battle for Nathan. He is a strong little boy and we know he will do well!

Fun with mommy while waiting for the doctor:

Being a patient, patient:

Peek-a-boo with daddy and Curious George while waiting:

Happy Nathan:

Nathan was zonked when we left:

Tuesday, April 5, 2011

A Double-edged Sword...

The Internet... I love it and I hate it. I love it for the endless information available to me at my fingertips. I love it for the social networks and blogs that keep my in touch with my family and friends. I love it for the ability for me to reach out and find other families dealing with a child with EE. I hate it however for the additional worry it causes me when I read too much into things.

Today a thought wondered into my mind about growth charts and Nathan's weight. His GI doctor, Dr. Williams, wants him to have 34-36oz of EleCare every day. Nathan has been averaging 25 ounces per day. Of course this has me worried. I talked to Dr. Terry about this yesterday and he said that 25 ounces was sufficient. At his doctors appointment yesterday Nathan weighed 20.10 pounds fully dressed. I looked back in his binder where I keep all of his doctor's visit papers and on February 23rd he weight 20.9 pounds, undressed. So technically, in 6 weeks time Nathan has lost a bit of weight. Of course, I am now scouring the web looking for growth charts to see where Nathan is, and of course I have created more worry for myself. I took all of his weights from every well visit and figured the percentiles. I don't like seeing that he is in the 6th percentile right now. :o(

Age / Weight / Percentile
2 months: 10.13 (6th percentile)
4 months: 12.8 (6th percentile)
6 months: 16.8 (28th percentile)
8 months: 18.2 (20th percentile)
12 months: 20.9 (18th percentile)
13 months: 20.10 (6th percentile)

Interestingly enough, I stopped breastfeeding Nathan at 6 months. That is the age he was at his highest percentile, and then it's dropped ever since. I don't think it's a coincidence. Nathan's occasional vomiting began sometime in September, when he was 7 months old, but it didn't hit full force every time he ate something until November.

Well, I can't do anything about this right at the moment, so I'll try to stop worrying. We are meeting with his allergist tomorrow morning, so we are on the right path to find out what he may be able to eat, so that he can start taking in more calories.

Monday, April 4, 2011

Visit with Dr. Terry...

Just got home from Dr Terry's office. Nathan had a low-grade fever last night and he has continued to cough and sneeze non-stop ever since he was diagnosed with strep throat last weekend. Thinking back he has been coughing and sneezing for weeks now, with this past week just being worse than normal. Fearful that the strep had returned we took him to the doctor this morning. The good news is that his strep test came back negative today. Dr. Terry thinks that Nathan just caught a cold virus right after getting rid of the strep. :o( Poor Nathan. I hate that he is constantly sick these days. But like always, he is a trooper and still manages to smile in between coughs, sneezes, and us chasing him around with a tissue wiping his nose at least once every five minutes. Dr. Terry said that we should be able to go forward with Nathan's allergy testing on Wednesday as long as he isn't running a fever. I pray that nothing delays this allergy testing. We are all so anxious to be able to offer Nathan a food of some sort and we can't do that until we get this testing done and the results back.