Wednesday, August 31, 2011

A routine

School has been back in session for a week and a half now, and you would think that I would have tons of free time now that 2 of the littleuns are gone for almost 6 hours a day. Well, at least that's what I thought would happen...lots of walking around the house twiddling my thumbs, scrubbing the baseboards for fun, and figuring out that there is only trash on TV in the middle of the day. And although I did gawk and totally laugh my rather large backside off while catching a few minutes of the Jerry Springer show the other day as I was folding laundry, these days have not contained any strolling around the house with nothing to do. (P.S. Who knew that Springer still came on daily? I mean, I know we all probably have some Springer action deep in our family roots, but who in their right mind wants to actually be on that show?)
I do have to say that it is so nice to have both girls at the same school with the same hours...there is not nearly as much running around dropping off and picking up as there was last year when Em was in preschool. And we are all really enjoying having a set schedule again. The house is so quiet in the mornings, and it is so much easier to keep it somewhat clean now that there aren't as many people here all day.
Nate has started having to learn to play by himself some...tough for a kid who has had "his girls" at his beck and call so much lately. And I have learned the art of role playing once again as he calls on me so often to play "Old grandpa and doggy" with him being the old grandpa and me being the doggy...can you tell he loves the movie "Up"? Never being that great at improv in drama class, I have restricted this role playing game to just a couple of minutes and only twice a day...and never in public. Nate has agreed to these terms.
The girls are loving school! Emma is learning to eat quicker during lunchtime and trying to figure out who her best friend will be this year. I am anxious to see how she interacts in the classroom and who all these kiddos are who she talks about each day. She really loves being there. Her only struggle these days is picking out what to wear each day, as having a fairly strict uniform policy prevents her from wearing "the most beautiful clothes in the school". Being the true girly girl that she is, she requests to wear skirts most every day, and we seem to always fight over what shoes she will wear. I truly hope that the uniform policy will stay in effect until she graduates from high school.
Abby is also enjoying this year and seems to be in another great class. Even though she is split up from a few of her best friends, she is making new friends and acquaintances really well. She has always loved school, and she seems to do better overall when her mind is constantly stimulated with new information and experiences. The older she gets, the more I am amazed at how her brain works. The only downfall to second grade and "growing up" is that for the first time, my little first born who used to follow me around like a flea and cry when someone else picked her up, has refused to kiss me goodbye outside her classroom each morning. Oh, the travesty! She'll kiss me if I drop her off in the van, but when I walk her in...nada. And there went my heart.This week started the new soccer season for the oldest, and next week will be the beginning of a new year of dance for Emma, where she will be taking ballet and jazz this year. And just to make our life even more crazy than it currently is, the girls are also in a music/craft/games program for a couple of hours on Wednesday afternoons with a lot of their friends. We seemed to have joined the rest of suburbia with their silly antics of being on the go at all times. No wonder these years seem to fly by so fast.The times we are all together these days are precious. With the few hours of a break from each other every day, our relationships with one another seem better. The girls enjoy playing together again and its rare to hear them fight or become cross with one another. Its easier to be patient with each other again, and the time together seems to be better quality time. Yes, schedules seem to be wonderful things for our family.

Friday, August 26, 2011

A bathless summer

In the past 3-1/2 years, we have never had the chance to be excited or hopeful about any of the medical aspects of Nathan's life. When you hear such things as "no cure", "progressive", "degenerative" and "life shortening" attached to the diagnosis of your child, it's difficult to be encouraged by medical interventions. We don't have a treatment that will keep the disease tolerable, nor a drug that will put it in remission. We simply treat each symptom as it surfaces, throw supplements and cofactors in that we hope will help in the long run, and pray that better treatments or a cure will happen in the lifetime of our children.

Its the life to which we have become accustomed to, but there are still times where it all seems too overwhelming to process.Even though no 2 kids with mito are the same, the treatment options and plans seem to follow the same route. Each medical intervention to give help and relief to your child is met with heartbreak at the realization of what has been lost. Its hard to be hopeful in these circumstances.

So when our surgeon presented a potential new treatment for Nate a few months ago, it was the first time in quite a while that I truly felt excited and hopeful about this intervention in the life of my son. The question was if it would work.

Nate is doing amazing...simply amazing. He feels great, has incredible energy, and is eating more than he has ever eaten (on top of still getting a ton of calories through his tube feeds...he has a lot of catch up growing to do). This GI stimulator has truly been life-changing for him, and it has been incredible to witness this transformation.
We know it works, but we really wish we knew why it works. The inquisitive part of me has an innate desire to know why things work, so it has been difficult knowing that we simply don't have the data or research showing us how and why it works exactly. The docs and researchers are fairly confident that it changes something in the interstitial cells of cajal, which are the cells found in the GI tract (esophagus, stomach, small intestine, and colon) that are the pacemaker cells of the gut. I find it no coincidence that these cells also contain an abundance of mitochondria (usually meaning that the function of the cell requires a lot of energy) and to quote this journal article, "mitochondrial Ca2+ handling may underlie the dependence of gastrointestinal pacemaking on oxidative metabolism." In my very unprofessional opinion, I wonder if dysfunction in these cajal cells are truly the catalyst behind mitochondrial disease-induced gastrointestinal dysfunction and failure, especially since they work as the intermediaries between the nerve cells and smooth muscle cells in the GI tract. As these cells succumb to apoptosis, it seems that the gut will lose its pacemaking abilities, thus creating the failure to move food through.

And to further that thought process, I wonder if the high frequency/low energy stimulation Nate is receiving from this device could be reducing the workload of his mitochondria in his cajal cells, thus decreasing the oxidative stress in these cells and allowing them to perform more optimally. If this is the case, the patient would need to still have a good amount of cajal cells for it to work, as they know through past biopsies that the stimulation does not work if the cells are depleted or severely low in number. Obviously, these are just theories circling around in this rattly ole' cranium of mine. We need research...we need understanding.Pending insurance approval (this is a very, very, very expensive device that will be implanted internally...think in the ballpark of a Hummer with blinging rims and a deafening sound system), Nate will have the permanent GI stimulator placed on October 11th. The device will lie in a subcutaneous pocket in the abdominal wall, and the leads will be screwed into the stomach muscle.

Right now with the temporary stimulator, the leads are screwed into the mucosal lining of the stomach, but since food hits them and there is so much movement at that part of the stomach, the leads migrate and come loose easier...thus the reason why it is a temporary placement. The leads of the permanent one will be in a place where this shouldn't happen, although due to this, the response of the stimulation usually takes a lot longer than the temporary one, and it isn't usually quite as effective. He more than likely won't get as good of symptom control and treatment as he is currently getting with this temporary stimulator...but it will still be a whole lot better than it was before. Its another one of those questions that don't have answers to yet...why does the temporary vs. permanent placement of these leads give varying reactions? Hopefully we can get answers as research continues and tailor the treatment as we know more.
This summer shall be known as the summer when Nate didn't have a real bath for a full 2 months. Believe me, that kid can have all kinds of funky smells emitting from his body. It will be nice to plop him in a sudsy bath again and give him a good washin'. There's only so much you can do with sponge baths.

But I also hope that when we look back over the past few months, we also realize that it is the summer where Nate made a turn-around. I pray that this treatment continues to work and that my little man continues to improve and can get several more years of use with his stomach and intestines. We have been blessed with many incredible opportunities in regards to Nate's medical care, and we are abundantly thankful.

Monday, August 22, 2011


My dearest Emma,

You popped out of bed with a smile on your face the moment I stroked your cheek to wake you for this big day. You were so excited! You quickly dressed, tried your new backpack on, and ran to check your new look out in the mirror. I have to admit, you were mighty cute.

Your goal this summer was to drink as much milk as you could so that you wouldn't be the smallest kid in kindergarten. I'm not so sure you succeeded, as you looked so tiny walking through those halls to your new classroom. You said you were nervous, but it never showed at all. You walked with an incredible amount of confidence as we dropped Abby off first and then made the trek to your class.

You knew exactly where to place your lunchbox, and you found your cubby to hold your backpack. While sitting quietly and thumbing through a book, you looked up at me one last time and smiled your squinty-eyed smile. I look at you so often and still see you as my baby girl, but this morning, I realized how old you have suddenly become.

You are pretty amazing, my sweet Emmabear. You have the innate ability to adapt to any situation you are in with such an amazing attitude. You tackle these big milestones with ease and are excited about the adventures that lie ahead with each new step in your life. Your laid-back personality makes walking this journey with you so much easier on us as well. I know you are going to enjoy every single aspect of this time in your life. These are some of the best days! I love you, Em. Happy first day of kindergarten.
Make a video - it's fun, easy and free!

Link to Abby's first day of kindergarten this time 2 years ago: here.

Sunday, August 21, 2011

In review...

As we approach the evening on the last day of summer break, its impossible to understand how quickly our summer has passed. Those emotions are duplicated each and every year around this time as we buy copious amounts of classroom supplies, set backpacks beside the door, and lay out brand new clothes and shoes for the first day of school. Summer break seems to always speed by at record levels, and this year was no exception. But despite the obvious "big" things we experienced this summer (Marco, grandparents, and quite a few days in the hospital), we had a lot of little pleasures that filled our summer days the past couple of months...We got a lesson in why it is never safe to stand near a cow when it raises its tail. One kid was completely grossed out by the reasoning behind the "raised tail", where the other two hooligans thought it was mesmerizing and totally cool. Life in the country seems to be so much more interesting and educational than life on the culdesac.
We perfected our cannonballs, pencil dives, and belly flops. Emma perfected the art of swimming in the deep end without the need of floaties and worked hard on her pirouette dive.
The girls learned to spend copious amounts of time with each other with minimal fighting most days...well, some days...well, every once in a while. They also realized that in order to be lipstickless once again, it would require the removal of several layers of skin via a good ole' fashion scrubbin' by the mama.
We were entertained by the colossal-sized edible growths on the ends of Aunt Bethany's phalanges. Each child erupted in a series of gags and highly dramatic sounds of disgust at the insistence that they taste the fun, edible appendages. What kid doesn't like black olives? Obviously all of mine.
We enjoyed a much-needed girls day overlooking the Atlantic...
...and we tried to dig a hole deep enough to send Emma to China. The only thing that stopped us was her unusual inability to breathe while being completely encased in sand. Well, and the hot molten lava that is seemingly at the core of the earth. She would have loved China. Maybe we'll try again next year.
The littlest Ferrell ended his 3-1/2 year run with the highly addictive act of sucking on a pacifier. He decided to drop it cold-turkey, mainly due to the nationwide shortage of paci patches that would have made his detox prolonged but a bit easier. The first couple of days were met with the tough withdrawal symptoms of tears, regrets, and pleadings for "just one more time". But I am proud to say that the little guy stuck with it through the toughest times and is now a full 2 weeks sober.
We watched copious amounts of TV through the summer, much to the chagrin of the mother who had a clear set of TV-time guidelines at the beginning of the break that was quickly thrown out the window. Through the wonderfulness of Netflix, the chilrens learned to love the old school cartoons of Popeye, Inspector Gadget, and Ghostbusters.
We have one tree in our yard. One little lonely tree in the front yard. But that tree has been the playground to 2 little monkeys most evenings after dinner, after it has cooled enough to be outside without succumbing to heat stroke in 2.3 minutes and before the hoard of mosquitos decide to feast on anything that has a heartbeat. That gives us about 13 minutes outside each day. Summer in Florida is like winter up north.
It was a good summer. Stressful at times, but we had great company, some relaxation, and good memories created that will last us through the craziness that will engulf our life over the next few months as school and extracurricular activities commence once again.

Yes, it was a good summer.

Tuesday, August 16, 2011

A mini Doogie

He's made the unconventional trade-off from long, white coat to wife-beater and undies, but I dare say that he has one of the best bed side manners around...

Sunday, August 14, 2011

And life blows by

In one week, we'll once again walk to halls of our local elementary school, waving to friends and acquaintances while catching up with the latest tales of summer vacation. The familiar smells of construction paper and glue will remind us of days past, and we will once again be giddy with excitement and anticipation of the year ahead. We are used to this scenario...but this time, it will be different.

This year, as I walk my oldest daughter to the second grade building, we will take a small detour while dropping off her little sister to her kindergarten class. This year, everything will be different.

Emma feels like she owns Talbot Elementary School already. She has spent a good fraction of her life mingling within the beige colored concrete walls, as we have tried to be apart of the school as much as possible in the past 2 years. She was 3 years old when she started trying to keep up with her sister and all the other big kids as they participated in the morning ritual of running during the school's "morning mile". A tiny 3 year old, whose itty-bitty legs could barely run one lap...yet a determined toddler who continued to try to keep up with the rest.

As a 4 year old, she carried Abby's backpack on her back all the way to her big sister's classroom most mornings...trying so hard to look like she belonged among the grade schoolers. The bottom part of the backpack landed under her rear as she wore it on her back, and it was always quite comical to see her trying to act so old.

And in one week, she will walk the corridors of the school she has known and loved for 2 years...only this time, she will indeed belong there. She will walk her tiny self into a classroom she is already all too familiar with and into the arms of a teacher she already loves, as she has been blessed to have Abby's kindergarten teacher as well...the one she has begged to have for the past 2 years. She will soon be indoctrinated into the land of fiskar scissors, lined paper, PE, and centers. She will soon realize how quickly she is required to eat at lunchtime, thus practically starving for the first month of school...if I know my extremely slow eater at all. She will soon make new friends and learn new rules and feel so much older while walking through the halls with the "big kids".

My little Emmabear will soon be a kindergartner.

So why can't I get the image of her chubby-cheeked babyness out of my head?

Friday, August 12, 2011

The little things make the biggest impact

I was talking to a dear friend today about going through times in life where we are bewildered and a bit disappointed about the difficult paths we sometimes have to encounter...wondering why it is seemingly God's will for us to have to face some of the obstacles and trials that we really don't want to face. But we both ended the conversation talking about the amazing blessings we had received going through those trials...the way we have grown, the way we have changed, the incredible people we have met and the blessings they are in our lives...Right before Nate was being wheeled to the 2nd floor for his procedure early this morning, one of those "incredible people we immediately fell in love with on this journey" popped into our room with flowers, cupcakes, and a precious heart-warming card as a birthday gift. My heart was swelling with love and gratitude and my face was lightened with a smile as we wheeled my little-un to the pre-op holding area.When we came back into our room a few hours later, a sweet hand-made sign was taped to the wall by another one of our favorite nurses wishing "Happy Birthday". I can't even describe how wonderful it felt to look up at that sign every few minutes and know that our dear friends there took the time to make this day special. It meant so very much to me. These incredible people, who we wouldn't have the wonderful privilege of knowing if it weren't for this crazy journey we are on, made this birthday one that I will never forget. I am so thankful for each and every one of these precious souls.Nate did great today! The procedure was very quick since they knew exactly where they needed to place the leads this time. The great thing is that the last 2 times he has gone in the OR, there were no additional cuts to be made...they have merely used the preexisting stoma from his g-tube to place the leads. I have nothing but great things to say about our surgery and anesthesia teams. They know Nathan quite well now, and that makes things go by so smoothly and comfortably for everyone. I had a really great talk with our surgeon this morning about the coming weeks for Nate. We want to get as long of a trial with this temp stimulator as we can for several reasons...reasons that I hope to explain more in depth when this trial is over. Hopefully we can get a good accurate picture of the day to day life of Nate with this stimulator as opposed to him without it.
It was a good, quick stay this time around. After the little guy took a good nap this afternoon and woke up looking a lot better than he had been all day, we were discharged late afternoon and home by 5. Oftentimes you make that trek home from the hospital with a feeling of defeat, sheer exhaustion, uneasiness, and being overwhelmed. But every once in a while, everything goes perfectly...and that ride home gives nothing but smiles.

Thursday, August 11, 2011

Where we stand now

Tomorrow, I'll turn 30 years old. The smells of the cake my sister and the girls are currently cooking waft through the house as they hurriedly put together what they had planned to do later. The sweet card and gift they gave me made me cry. But the best gift I have had was having my little sister here for 2 weeks. We've laughed until it hurts to laugh, had some really great conversations, and just genuinely enjoyed each other's company. I will miss her greatly when she heads home.
30 years old. I have high hopes that I will now no longer be referred to as "the baby" among the group of moms we spend so much time with through the school year. And maybe now, I won't be gawked at when people find out my age and the fact that I have 3 kids...2 of whom are now in school. 30 just seems so much older. There are days where I still feel like I'm 12. But there are also days where I feel much older than I am...continuous stress will do that to you.
Its funny how life goes on despite the seemingly momentous milestones that take place. Tomorrow, we'll be in the hospital once again. Actually, we'll start that way in just a few short hours...

It took a few days, but Nathan responded very well to the temporary stimulator. He started eating so much and not complaining of pain or nausea or discomfort at all. He had more energy and seemed improved overall more than we have witnessed since starting oxygen therapy 2 years ago. He was a different child...happy, playful, not sleeping as much, hungry, and so very sweet. He felt great!! With Jay and I being each other's checks and balances to hopefully keep the placebo factor at bay, we both were in complete agreement that it was indeed working well for Nate.However, something had happened within the past day. He just didn't seem as good last evening than he has this entire week. And when he woke this morning, he was really bloated. I felt a bit defeated and really confused going into our appt with our surgeon this morning, but I also could not deny the fact that he has had one of the most incredible weeks he has had in a very long time. We also couldn't ignore the fact that he has gained .8kg in a week...almost 2 pounds. Granted, I think some of that was due to his bloating this morning, but I know from weighing him at home that he has gained a good pound at a week!! Eating will do that to you! And that's something he hasn't done much of in the past few months.Our surgeon checked the pacer and realized that the impedance had changed quite a bit and was almost at the level where the pacer would stop sending electrical signals. This could be one of the reasons why he is so bloated today. A couple of things come into play here...when he placed the temporary stimulator last week, he noted that the angulation of Nathan's stomach was unusual and made placing the leads rather difficult. This could be why the leads are coming loose. But also, Nate took a big fall yesterday morning directly on the stimulator taped to his belly, and that could have jostled everything enough to loosen the leads. Regardless, we know it is about the stop working entirely and could potentially be seeing the effects of it losing its signal already.However, we need a little more time and information to make sure that this stimulator is working as well as we need to warrant the placement of the permanent pacer. The placement of the permanent one is a bit more in depth of a surgery that we don't want to put Nate through unless we know without a shadow of a doubt that it is working really well for him. This type of treatment is usually done on older kids and teenagers in the pediatric population, and they can give numerical values to their symptoms to be able to accurately portray how they are responding. Obviously, Nathan can not do that, so we are hoping that giving him longer time with the temp can help all of us tell completely how he is doing for more consecutive days. Additionally, since this treatment in pediatric patients is still in the experimental phase, insurance coverage is a bit difficult to achieve, so we need a longer trial to warrant the coverage.
Since his current pacer is almost kaput, we would need to insert a new one to continue with this trial. So, Nathan will once again be admitted to Shands this evening and go in tomorrow morning for the placement of a new temporary stimulator. Since our surgeon is familiar with the odd angulation of his stomach now, it should be easier to apply the electrical leads. Hopefully this will be a quick 2 day stay and be home by Saturday.

One thing we have learned since having Nathan in our lives is learning to fly by the seat of our pants fairly regularly. I think that's how that saying goes. But the emotional roller coaster of doing so is tough at times. Nathan is doing great! Sad to say, he was so excited when I told him he was going back to the hospital today, as he started talking about all the movies he would watch and the toys he would play with in the playroom and being able to read his favorite books the hospital provides. This would all be infinitely harder if he weren't so adaptable and easy to please.

Tuesday, August 9, 2011

Partners in Crime

Thursday, August 4, 2011

The problem with making friends...

I have mentioned in the past that our stays in the hospital are made easier by the people we encounter...people who we deem as friends...who have become integral parts of our life over the past few years...who we love as individuals.

In the medical world, doctors help fix you and nurses help nurture those "fixings" until you are able to be part of society once again. Doctors get a lot of attention in our "world", but I think nurses and other caregivers need just as much attention...
Nathan was discharged from the hospital today...just a few hours before one of our favorite nurses was turning in her Shands badge and adjusting her life compass for a state quite a bit west of us for a new beginning and a start to nurse practitioner school. I have to be honest in saying that my heart is broken saying goodbye to this dear person, but I am also elated on the adventure she has ahead of her.
After she removed his IV and was walking out the door, Nate started to tear up while saying that he would miss his favorite nurse. She has been such an integral part of the changing moments of the past month of his life, and he is old enough to realize that he most likely won't see her again as she embarks on a new journey in her life.

He loves his "Miss Lauren" and her alligator name badge holder thingamajig. We all do. We'll miss her...we already do.She leaves a lasting mark on our memory banks from here on out. She will forever be a part of our lives.
In other info, the little guy is doing well. Really well. We came home today early afternoon, and Nate and I had a really long nap while my sister took the girls to the movies. He woke seeming to feel so much better. And better yet, he ate a good amount for dinner tonight...4 peanut butter crackers, 2 big handfuls of pretzels and 1/2 a poptart...more than he has eaten in a good while and with no complaints of feeling sick or hurting afterward.
The emotional part of trying to figure out if he is responding to the pacer is the hardest...the psychological effects (the placebo effect, like his surgeon referred to) are tough with something like this. If you would have asked me a day ago how he was responding, my answer would have been fairly negative. If you would ask me tonight, I would have nothing but positive things to say. I am thankful that we have some time to see how he responds, and I continue to pray that we have clear evidence one way or the other. It is a little tough to go from praying earnestly that he would only respond favorably to the treatment to the prayer of "thy will be done, but please make it clear to us" prayer.

(PS: We love Ms. Jackie too and better NOT hear of her moving any time soon!!!)

Wednesday, August 3, 2011

The temporary pacer

I like to keep the blinds open when we are inpatient. I like to look out to see the sun peak through the early morning hours and evolve through the day until the moon seeps through the slats of the encased miniature blinds. The hazy crescent moon dimly shines through our window tonight as I listen to the rhythmic sucking sounds of a little paci boy falling asleep...hopefully (and sadly) one of the last nights I hear that sound of confirmation that the little guy is asleep, as his days with his paci are coming to a close.
I have so many emotions running rampant this evening, that it is difficult to explain how this admission has gone. We love the people here...from the bottom of our hearts, we genuinely love so many of the medical personnel we encounter during each of our visits. They are all amazingly special people who will help Shands to rise high among favored Children's hospitals. Amidst the circumstances, I am so thankful we have had the opportunity to meet such loving and caring individuals. Each one of them add a sense of comfort to a chaotic medical world, and they are all incredible blessings in our life.

Nafey boy was admitted Monday afternoon and taken down Tuesday morning for the placement of the temporary gastric stimulator. He handled the procedure very well. Unfortunately, he got sick a few times during the day and didn't tolerate eating too well. He was maxed out on zofran until yesterday evening, but after that last dose, he seemed to be able to tolerate his feeds (formula) quite a bit better. I was kind of discouraged last night at his reaction to the stimulator, but we wanted to give him a little bit more time to show improvement.
With gastric electrical stimulation, a patient who is going to respond to this type of treatment should show a dramatic difference in symptoms within 12-24 hours of placement. Our surgeon explained that he had a patient last week who could not tolerate food without having severe symptoms of gastroparesis and she was eating cheeseburgers and asking for more the night of the placement of her temporary stimulator.

Nate's nausea seemed to be gone this morning, but he complained about tasting his meds when we gave them to him in his tube...something that shouldn't be happening. He ate a teeny bit of breakfast and seemed fine. He had good energy and was ornery as anything...he was doing great! It was then that I was getting excited that maybe the stimulator was working. I had not let myself picture how much better of a life Nate would have if the stimulator was a huge success until that moment. To picture him being able to eat anything he wanted without pain or bloating or discomfort or nausea was so exhilarating. Oh, how I want so badly for that to happen! He went down for a nap mid-morning, and I bumped his feeding rate up by 10mls with plans to bump it up even more when he woke because I was convinced that the stimulator was starting to do amazing things for the little guy's stomach.Unfortunately, he started complaining that his stomach hurt a few minutes after he woke from his nap. He asked for meds and I turned down his rate again. He had a few random gags through the afternoon but never asked for zofran. He ate a couple bites of pizza and 2 saltine crackers a while after his pump feed was finished. I was pretty bummed about how little he had eaten throughout the day and how he responded to the small bumped rate past his "comfort zone" rate in his feed. He seemed to want to eat, but was done after taking a bite of something. Finally right before bedtime, he asked for some dry cereal and ate quite a bit.

The problem is that nothing has changed. Nothing. When talking with our surgeon this afternoon, I explained that the emotions of all of this are up and down...I wanted him to respond to this pacer so much that sometimes I think he may indeed be doing well with it. But after a while, I realize that everything is the same. I talk myself into the fact that he just had anesthesia yesterday and his stomach just needs more time, but then I realize that everyone else who responds to the pacer does it within a few hours because it is doing the extra stimulation for the stomach to move food through.

We are not giving up hope on the pacer quite yet, but our surgeon did say this afternoon that Nate may be one of the select few who do not respond to this form of treatment. Even though we knew this was a very real possibility, it was still like a punch in the gut to hear it.

We are going to be heading home tomorrow to test the stimulator more for a few days. We want to see how he responds outside the hospital, if things change with a little time, and whether we can get an accurate portrayal of how Nathan's stomach is doing. We will report the findings back in a few days, at which we will then have a permanent pacer implanted if we see a dramatic change for the better, or have this temporary one removed and his g-tube switched to a gj-tube.

Its been a long week so filled with emotional highs and lows. I pray that God will give us wisdom and irrefutable evidence to make our next decisions.

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