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!