Catch Up

I have so much to say and such little time these days!  I do apologize for this way overdue post.  So many of you have asked about our trip to Cincinnati and our recent hospitalizations. Thank you for your kind words, prayers and positive thoughts.  It’s been a tough start to 2012, but we are paddling along, taking things in stride as they come. 

Just to put things in perspective:    Our sweet baby girl is now six months old.  Stanton has been in the hospital four times since becoming a big brother!  We spend the weeks in between hospital stays recovering, rebounding, playing catch up and trying to restart some resemblance to a normal routine, only to find ourselves intertwined in chaos all over again.

Stanton was hospitalized the first of February with a severe asthma attack which lead to an upper respiratory infection.  Two weeks later we traveled to Cincinnati for our week of testing at the Children’s Hospital.  Stanton saw various members of their top rated aero-digestive team including pulmonology, ENT, gastroenterology and the feeding team.  Our first appointment was a video swallow study.  This involved Stanton eating a variety of things mixed with barium while being videoed and x-rayed.  This is super complicated for a child who doesn’t eat much and is super picky about what he will eat.  If it’s the wrong color or texture – it’s not going in his mouth.  Mixing foods with barium changes both the color and the texture…so it was an interesting experience to say the least.  I was able to get him to eat some pudding and some peanut butter.  It was enough to show his swallow and the test verified all was normal – good news!   We spent the rest of the afternoon registering for all the various procedures to come. 

Stanton had a sedated CT scan of his respiratory system the following morning.  That same afternoon we met with the pulmonologist and reviewed the CT scan and his history of serious respiratory illness.  The pulmonologist said his symptoms and hospital stays didn’t match the CT scan.  The scan didn’t show much damage to the lungs or bronchs, only a bit of scar tissue which did prove his continued chronic episodes….but didn’t explain them.  

The next morning we checked into the hospital for the aero-digestive team scope.  The ENT, pulmonologist and gastroenterologist all preformed the scope together, each looking at their area of the body.  Anatomically, everything looks normal and is functioning as it should.  Biopsies were taken and we are still waiting for some of those results. The ENT said Stanton’s throat is functioning well.  He did remove Stanton’s ear tubes as they have been in for two and half years.  The pulmonologist discovered that Stanton’s cilia in his upper airway were stiff and unresponsive during the scope.  He took a biopsy and sent them to the hospital’s in house lab where they remained unresponsive.  So Stanton’s cilia have been sent to a lab overseas for further testing. We still don’t have those results. 

The gastroenterologist also took some biopsies of his esophagus and stomach.  He then inserted an impedance probe which Stanton kept for the next 20 hours.  The impedance probe is a small tube that goes up the nose and is threaded down into the esophagus.  It’s attached to a small computer box that Stanton had to “wear” on his shoulder (like a purse). The probe records changes in flow within the esophagus, the pH of the esophagus and other common reflux symptoms.  It also shows how far the reflux goes.  While Stanton had the probe I had to push a button on the computer box if he coughed, burped, gagged or threw up.  I also had to push a button when he was eating/drinking.  Stanton’s impedance probe showed that he refluxed 68 times and 54 of those times reached his throat.  This just showed us that he still has very active, severe reflux.  Even though he hasn’t vomited since November, he is still dealing with this disease.  So, the gastroenterologist put him back on prevacid. 

After we checked out of the hospital we met with the feeding team.  They pointed out that the list of foods Stanton will try is three times as long as it was this time last year.  We all understand that he is being sustained by his medical formula, Elecare and food is still experimental for him.  However, his weight was good so they encouraged us to try some tough love as Stanton will only drink his formula out of a baby bottle.  Part one of the tough love is the suggestion of putting an NG feeding tube through his nose the next time is hospitalized and on a feeding strike.  He hated the impedance probe down his nose due to the tape on his face….so the feeding team thought that might be a wake-up call for him.  Stanton will drink other things from cups and straws, but not his formula, so the team suggested we begin offering his formula in a cup just to see what would happen.  They also encouraged us to find a local feeding team and GI.  They suggested we look at the various options in New Orleans.  After comparing the pediatric programs in New Orleans, we’ve decided to try the New Orleans Children’s Hospital.  They have a feeding team with a strong reputation.  My pediatrician is in the process of setting up a referral to one of their gastroenterologists.    

Since we’ve been home Stanton has been in the hospital again…but it was a short stay so the doctors here did not do the NG feeding tube.  We have started fading out bottles and of course Stanton refuses to drink his Elecare now!  Initially I was offering the cup of formula and as soon as it was refused, I’d give it to him in a bottle.  I faded this out as time went on with no progress.  I realized that as long as the bottle was an option, that would be his only option.  His bottles are old and all starting to leak and drip.  This has been a source of frustration for Stanton. So, I told him that if a bottle was drippy, we’d just throw it away because it was old and not good anymore.  We have thrown away all but about three bottles, which I’ve hid so that his only option is now a sippy cup or cup with a straw.  Fast-forward to today…..this has totally backfired on us!  He is completely refusing the formula in a cup.  Stanton got really sick this past weekend and ended up back in the hospital so I gave in and dug out a bottle.  He promptly stated that bottles are for babies and he is not a baby.  Ugh….so now he won’t even drink it in a bottle anymore either!  Elecare has 30 calories per ounce and Stanton was drinking about 32-36 ounces per day.  This means that his intake is down an average of 900 calories per day now and he isn’t really replacing them with anything substantial.  He has re-lost all the weight he just regained!  I’m feeling frustrated and worried. I find myself spending my whole day trying to get him to eat and drink.  It’s completely exhausting and beginning to feel like a no win situation.  I appreciate all of your thoughts and support as we continue down this unanswered path.

Make a Difference

Stanton has been healthy for the last six weeks!  We have made a couple of changes with his medications including adding Claritin , dropping Miralax to every other day and removing Prevacid. The Claritin seems to be working against the runny nose and mucus build up while the Miralax is keeping his system from backing up. Stanton has been on Prevacid since he was 10 weeks old.  The buffer compound that we use to mix it is no longer available, so our pediatrician agreed that now would be a good time to stop and see.  The longer we go between illnesses, the more courageous he becomes with food. I’ve seen a real increase in appetite without Prevacid.  I’ve been astonished as I watch Stanton eat and enjoy macaroni and cheese, carrot soufflé, hotdog, peanut butter, yoo-hoos, cinnamon rolls, pound cake, banana and granola.  In therapy he’s actually licked a variety of foods and textures without much complaint.  We are still holding our breath, waiting on the crash….but so far, we’re really enjoying a healthy Stanton!

The film crew for Abbott nutrition came over on Sunday to meet us and get to know Stanton.  He seemed really comfortable with everybody and spent the afternoon building legos, reading books, crashing blocks and playing space with the crew.   They were all super sweet and really great with him.  Luckily, the day of filming was a nice day and the crew got some great footage of Stanton playing outside being a wild boy.  They spent the afternoon filming us playing, reading, eating mac n’ cheese, being a big brother….it sort of felt like we were on a reality TV show as a camera man just followed us around.  Then it was time for make-up!  The make-up artist airbrushed make-up on and really pampered me.  I don’t usually wear lots of make up, so it was strange….but I must admit – fun.  The crew explained that they wanted us to focus on how Elecare has made a difference in Stanton’s life.  John and I took a trip down memory lane and looked through old pictures remembering that before Elecare, Stanton threw up at least twice an hour.  He spent his days lying around with no energy.  He was super emotional all the time and never felt good.  John and I took turns sleeping in his room as Stanton would wake up several times during the night to throw up.  Once we discovered Elecare, Stanton was already 20 months old.  Within the first few days of introducing this amino acid formula to Stanton, his vomiting decreased SIGNIFICANTLY from an average of 32 times a day down to 3 or 4 times a day. We realize that Elecare changed our lives by giving us a better quality of life.  During our filmed interview, John and I basically focused on this part of our journey.  We realize that Stanton has other issues, and we still don’t have a diagnosis, but we didn’t get into those issues as the point of the filming was about how his nutrition, health and feeding have improved due to this medical formula.

Abbott will use the footage to create a patient testimonial for medical conferences.  They will also put a short 90 second segment together for their website, however, this segment must be approved by the FDA – so who knows when that will be ready for release and what it will look like.  As soon as we have a link – of course I’ll share it with you! 

This is Stanton "on set" as we tested the sound

In the midst of dealing with the film crew, Cincinnati Children’s Hospital called.  They have scheduled Stanton for the week of February 20^th.  In addition to meeting with several specialists, he will also have a swallow study, a CT scan, a feeding evaluation, x-rays, an exploratory surgery/scope and internal biopsies with the otolaryngologist, gastroenterologist, and pulmonologist, a ph probe inserted to measure acid levels and follow up appointments with all the specialists.  It will be an extremely stressful, but hopeful week.  I ask you to all send us positive energy and prayers as we begin to make our travel arrangements and prepare for all the testing.  It is always an emotional time for our family…the anticipation of what’s to come, the hope for answers, the reality of process, our history of no answers, the financial burden.  It’s all part of our fight for Stanton’s continued health.  We do this to ensure that he will grow into who is to become and make a difference in this world. 

Hope

It’s been a busy couple of weeks meeting with doctors, gathering records and keeping Stanton healthy!  We have temporarily withdrawn Stanton from school as we are trying everything we can to keep him from getting sick and losing more weight.  So, each morning we have “school” at home.  His school sent me a packet of worksheets, so each morning we complete one or two of those.  His “handwriting” is really improving!  This week he traced two long, straight lines without any help!  I was thrilled to see that kind of progress.  Stanton also seems proud of his work and like to save it and show Daddy when he gets home from work.

We saw the pulmonologist, Dr. Scott Davis, at Tulane a couple of weeks ago and he was really great!  He spent about two hours with us, examining Stanton, asking lots of questions, gathering information and reviewing Stanton’s history.  Stanton’s lungs sounded clear so Dr. Davis sent us down to radiology for a chest x-ray.  He wanted to establish a “baseline” of what Stanton’s lungs look like on a good health day.   After the x-ray we went back to his office and waited.  Dr. Davis showed us the films and pointed out some areas of inflammation and noted concern.  He has requested all of Stanton’s past x-rays so he can compare before jumping to any conclusions.  Dr. Davis said that Cincinnati Children’s is the best, rated number one in pulmonology, with one of the few in house pediatric “Aero-Digestive” centers in the United States. He is happy to partner with them and be our “local” pulmonologist.  I really am so thankful to have a local specialist on board with our Cincinnati team!

As I was shopping for stocking stuffers at Target on Friday, Cincinnati Children’s hospital called.  Stanton has been accepted to the Aero-Digestive program!  The team accepted Stanton about 2 weeks ago, but the gastroenterologist and nurse practitioner took some time to call and speak with our pediatrician and other local doctors who saw Stanton in the hospital over Thanksgiving.  They represented his case to the team this past Wednesday, with the extra details they gathered, and the team flagged Stanton as an URGENT patient.  The team’s earliest opening isn’t until the first of April, but because they consider Stanton urgent, they have bumped him to the top of the scheduling list.  I’m not really sure what that means, but I have a feeling we’ll be going at the end of January or early February…but can’t say for sure.   Someone from scheduling should call before Christmas to let us know when we are to come. 

This whole process is a roller coaster of emotions….I’m beyond excited to know that our son will be seen by some of the best specialists in the country. It is a bit heartbreaking to know I have a child who needs the best and has been labeled URGENT. It’s a relief to have access to the best! The six days of testing and exploratory surgeries will be nerve racking.   All the “what if’s” are playing through my mind. I am hopeful for answers…at least a better plan of action.  I feel vulnerable opening myself up to hope – but without hope, there is no fuel for our continued fight for Stanton’s health.  Romans 12:12 reminds me to “Rejoice in hope, be patient in tribulation, be constant in prayer.” Such simple instructions, yet, such a challenge on a daily basis!  I think this will be my new mantra for the upcoming new year.

Partners in Crime

It’s official.

I know I shouldn’t feel surprised or disappointed….but I am a bit. I’m only human and the momma after all. My educated brain knows that 60% of kids with severe reflux have it, or that’s what all the research I find on-line suggests. I mean, we’re already treating Stanton for it with a daily breathing treatment called Pulmicort. Looking back over the last three years, we’ve treated most of the classic symptoms and flare-ups, however, each doctor, ENT, Immunologist, Allergist, Gastroenterologist, etc. we’ve seen has tip-toed around calling Stanton’s chronic lung/breathing issues what they really are….until today. ASTHMA - today Stanton received a diagnosis of asthma. Asthma and Reflux are truly partners in crime.

Since July 30th we’ve been to the pediatrician three times. On July 30th we went after Stanton crashed. This is what I’ve jokingly describe as his “time of the month.” Every three to three and a half weeks, the bottom just falls out from under Stanton. The mystery dots appear, the refusal of oral intake begins the clear runny nose kicks in, the vomiting eventually explodes and his oxygen levels plummet. On August 10th we went for an ear infection and increased reflux. Today we went for the right on time three week crash.

surviving on Mommy and Daddy's bed

The pediatrician obviously knows our situation and history and understands that getting a prescribed antibiotic down him is impossible. So, poor Stanton received a big shot of rocephin. We have all the inhaled and dissolvable steroids at home…so that’s where we are now, continuing to alternate the breathing treatments between Pulmicort and Xopenex. I’m hoping that Stanton will begin drinking something again by tomorrow so I can hide the dissolvable steroids in his Elecare formula. That’s the only way to get them down without a huge throw-up episode. (He hasn’t had any Elecare since Saturday around lunch).

Once we are over this episode, the pediatrician wants us to increase his daily Pulmicort breathing treatment from once to twice a day and see if that makes a difference. He also suggested we start watching to see if Stanton’s episodes become more frequent now that he is in school. If they do, the pediatrician wants us to seriously consider taking Stanton out of school. He said it’s his either his social development or his health and right now we may not be able to have both. UGH!!!! I thought we had finally arrived at something normal!!!! And Stanton really LOVES his pre-school. We’ve had zero transition issues. So I’m keeping my fingers crossed that it won’t come to this.



A couple of days before Stanton crashed



Connect the Dots

As I dressed Stanton for school this morning, I noticed the dots. They’re back! All over his torso, sides and slowly spreading to his back. I looked at the calendar and guess what? It’s been three and a half weeks since the last dots occurrence. It really is every three weeks or so. He was super irritable and weepy this morning. However, he wanted to go to school. With no other symptoms, I took him.

Stanton was excited when he walked into the school. He ran right in his classroom and hung up his backpack! When I picked him up he looked tired, but was still all smiles. He even gave every child a hug before leaving. His teacher said he had a good day. When I got him in the car I looked and noticed out of the 10 ounces of formula I sent, he only drank 2. No wonder he seemed tired and lethargic…..I thought. So, he drank another 2 ounces in the car on the way to speech therapy. At therapy he began complaining that his ear and head hurt. Sure enough, his left ear is draining.

As soon as we got home he sat down at our kitchen island and started profusely vomiting…..everywhere. Once I calmed him down, got his wet clothes off, sponge bathed him and settled him down on the couch in just a diaper, he fell asleep. Thankfully his draining ear was facing up, so I dug around in his cabinet and found some left over antibiotic single dose ear drops and gave him dose. I haven’t decided if I’ll take him to the pediatrician or not. I guess I’ll see how the rest of the afternoon goes and if need be, take him in the morning.

It’s only his second day of school. Looks like he’ll miss day three. Bummer!

I wish someone, somewhere, would connect the “dots.” I feel strongly they represent something more going on inside his little body…hmmmm….

Double Dose

In the past, when Stanton gets pneumonia, it’s usually just in one lung. Well, this unfortunate go around shows fluid in both lungs! Poor little guy just can’t catch a break….or his breath! He just recovered from pneumonia two and half weeks ago; I hadn’t even packed his nebulizer back in the closet. As he grows, at least he is becoming more compliant with his breathing treatments, which used to be all out torture sessions. Today he came up with the idea that his monkey, Mitzi, should have a breathing treatment too.

 This is how we’ve spent every two hours since Saturday night.

In days as long as these, I really love the message found in Romans 8:18, “ I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”

Hmmmmmm…..what will Stanton become? Will we one day look back and see this season as just a blur in his life? How will Stanton make a difference in the lives of others? What glory will be revealed within him? When I consider all the amazing possibilities before him, I get excited and know with confidence that we will endure this time and Stanton will indeed grow into all that he is to be.

Open Doors

"When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us." 

~ Alexander Graham Bell

For two and a half years now, we've tried to gather doctors, specialists and therapists around us.  A team of experts all focused on Stanton's well-being...a team dedicated to finding answers...people ready and willing to fight for his health. Doors have closed along the way.  Roadblocks leading to detours.  Telling our story to any doctor willing to listen.  Telling our story to doctors not interested.  Learning who to push and who not to waste time with.  Many miles traveled in a quest for answers and solutions.  As 2010 comes to a close I realize that although we still are without many answers, a door has opened for us. 

John and I have made the difficult decision to stop trying to develop a "local" team of specialists.  It's exhausting and simply not working.  I spend all of my "free time" letting laundry pile up as I call every allergist in a 120 mile radius only to learn that they are not familiar with GI related issues nor the elimination diet.  I spend hour upon hour making appointments, faxing records, following up with insurance, traveling to appointments, telling our story - only to hear that they don't know....or have considered.....

A team is already in place and waiting to work with us!  So, we are Cincinnati bound!  Stanton and I will travel back to the Cincinnati Children's hospital in Febraury.  We will meet with doctors and have some testing done. Although traveling is difficult - it is the best choice for Stanton for this time.  Plus - I feel excited about this choice; like a weight has been lifted off my shoulders! We are now an integral part of a true team!  It's taken me two years to stop looking at the closed door....the dream of a local team.  But now that my eyes are set on the open door - all I see is hope.

Joy

Merry Christmas everybody! 

I've changed the background of the blog in honor of Christmas.

I made a mental shift over the weekend....finding a name or diagnosis for what's going on inside Stanton's body doesn't necessarily mean we will find a cure.  Finding a name will not change who Stanton is or who he can become.  Raising him to be a strong, fun, independent, world changer is up to me...not a doctor.  This is a profound "A-HA" moment for me. An internal break through.  Don't worry, we're still fighting for Stanton to feel good everyday - not just a day here and there.  Just today I was on the phone with a nurse from the team at Cincinnati Children's Hospital.  I reviewed with her all we've accomplished and looked into this month.  I was quite surprised with how long the review list was!

List:  started medication for gastroparesis, introduced egg with bad results, tested for Cystic Fibrosis and are awaiting results, have lots more genetic lab work ordered due to high levels in amino acids from previous testing, met with allergist (this is our current road block - both allergists we've seen don't think Stanton needs the skin test), saw our ENT, have spoken with our pediatrician several times, can't get our GI to return our calls, have started hanging out with our speech therapist in the radiology room getting Stanton ready and comfortable to complete the swallow study.

Whew!  We've been busy!  And, we will continue to be busy, however, I've decided the laundry can get folded later and the dishwasher can stay full.  When Stanton wants to play cars, we're playing cars!  We have also made the difficult decision to NOT travel over the Christmas holiday.  Thanksgiving was just awful for us....so, we're staying put.  I'm sad to not see my extended family, but really excited about Christmas morning at home. 

Yes, Stanton would love to have this car for Christmas!  But....it doesn't quite fit under our tree.  Not to mention we have several more years before he can drive! hahahahaha.  Stanton would like for Santa to leave hot wheels and a Buzz Light year with buttons under the tree.  So sweet and innocent and full of the wonder and joy this season naturally ushers our way.  We just have to be willing to stop and accept the gift of joy and innocence. 

Still Searching

Stanton is still just not himself. He has thrown up at least once a day (yesterday three big times). His nose is constantly running, his eyes are watery and his cough is still croup sounding. He seems to tire out easily when playing so we’ve just been watching a lot of movies! I think I have all three Toy Stories memorized. And to think I was one of those pregnant moms who said my unborn child wouldn’t watch TV until the age of two! Hahaha…..if only I had known…..

I’m experimenting a bit with how to give Stanton his medications. When we came home from Cincinnati, I just put everything together in one bottle three times a day. Since Stanton has shown an increase in vomiting, John and I started to wonder if the medications were effecting each other. The doctors say they shouldn’t….but something just isn’t right. So, this week, I’m putting a couple of medications in one bottle and the others in the next. He’s still technically receiving all meds 3 times a day (that is when he drinks all of his formula for the day….which actually hasn’t happened in a while). Anyway – I am hoping to land on the right combination soon. Or maybe, after 6 weeks of trying, the team will decide we aren’t on the right medications and we’ll start over with something else.

Stanton and I survived the cystic fibrosis test last Thursday. He was nervous and scared because we back in the lab. I assured him there were no needles, but I don’t think he believed me until it was over! The nurse was sweet and gentle. The test was really simple: they cleaned his forearm with alcohol, then attached two wax looking circles to the area. The nurse called them “watches” as the circles were attached to an elastic band much like a watch band. The “watches” were attached to a box with wires and held on his arm for about 10 minutes. They sent an electric charge to Stanton’s arm which stimulates sweating. The nurse removed the two circles and replaced them with one metal “watch.” She then covered it with saran wrap, plastic, a glove, an ace bandage, a bag and Stanton’s long sleeve. The instructed me to run Stanton around the hospital and get him hot….keep him moving. After 45-minutes or so, they took everything off and we were free to go home. The circle was full of Stanton’s sweat which will be sent in for the testing. I’m not sure when the results will arrive, but, based on our past lab experience, it will be around 6 or more weeks.

Our geneticist, Dr. Martinez, sent us the letter explaining the results of the amino acid lab work from August. I’m not really sure what it all means, but Stanton has elevated levels of dicarboxylic and 3-hydroxydicarboxylic acid.  We need to go back to the lab and have some plasma tests, metabolic tests and a repeat of the amino acid test. I believe these tests require both blood and urine samples.  The letter stated that this abnormality in enzymes and acid levels can be seen in patients with metabolic disorders including fatty acid oxidation defects or organic acid defects.  I'm clearly just stating the letter here and can't yet say what any of this is, what it could lead to or what it might look like.  I do feel, however, hopeful that we are one step closer to something here though.

We’ve scheduled an initial appointment with Dr. Holland, our new allergist for this Friday at 2:00. This is just a meet and greet - not the actual allergy testing. 

In our house, we call the season between Thanksgiving and Christmas Advent. For many years, I thought of Advent as a time to remember the miracle of Jesus’s birth experience and what that experience means to me. The story of the birth of Christ is amazing, don’t get me wrong. Who could really top the miracle of God becoming man through a virgin? However, since having Stanton and dealing with all of his health difficulties, this Advent season feels completely different. I have truly used this time to focus on the specifics of the season. Last week’s Advent focus was “hope.” I tossed around questions such as

What is hope?
what does hope look like?
What gets in the way of hope?
How do I live in hope?
What are my hopes?
How does hope manifest itself in my life?
Where does my hope come from?

This week’s Advent focus is “peace.” While I feel I live in hope and have hope for Stanton’s future…..peace is a different story. I’m really wrestling with this idea. Instead of peace, I find worry and to do lists and distraction inside my head. How can I stop and feel “at peace” with so many unknowns and so much to do and fight for? Do the words fight and peace work together? A fight is what we’re in the midst of. I feel we are fighting for answers, fighting for solutions, fighting for doctors to listen and work hard for Stanton. I’m not sure I’ve even considered the possibility of peace. However, I do believe that there will be a day when I am at peace with even the unknowns and the unanswered.

In honor of this Advent Season, I must share this with you:

Verse 12 is our promise of a Savior. Verse 13 answers our human condition and how I am trying to live daily.  Verse 14 is my hope for the therapists, doctors and nurses who surround Stanton.

Romans 15:12 - 14 
 12) And again, Isaiah says,


“The Root of Jesse will spring up,
one who will arise to rule over the nations;
in him the Gentiles will hope."

13) May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

14) I myself am convinced, my brothers and sisters, that you yourselves are full of goodness, filled with knowledge and competent to instruct one another.

Juggling

What a busy week….and it’s only Wednesday! We gave Stanton his last breathing treatment Monday night. He still has a nasty sounding cough, but now has short spurts of playfulness and being silly. He is also up to drinking an average of 15 oz of formula a day (still not close to the 32 oz he should drink, but an improvement). Now, if we could just get him back to sleeping through the night – that would be great! I’ve been sleeping with him sitting up in the la-z-boy since Saturday. When he lays down flat, the coughing and vomiting really get exacerbated, so the chair has been the best way to keep him comfortable.


Today we had an ENT appointment in New Orleans. Our appointment wasn’t until 1:30 so we spent the morning at the Louisiana Children’s Museum with my dear friend and her children. It was great to just be out, playing, visiting, and feeling normal for the first time in a while. Thanks Nikki for meeting me and spending your day with us.

The ENT said Stanton’s throat and ears look good. He seemed as frustrated as I am that another year is about to close and we still have no real diagnosis for this chronically sick little one who still can’t seem to eat. I do feel we have a better plan of action – but in reality – we are still just ruling things out and searching. The ENT ordered a sweat chloride test so we have to go back tomorrow to have this done. They only do the test at 1:00 so we just missed it for today. This test rules out cystic fibrosis. I really don’t think this is what we’re dealing with, but the ENT was surprised to realize that CF had not been ruled out already. Stanton has had tons of upper respiratory infections, croup, and pneumonias, so the ENT felt we should take a look. Wish us luck with that tomorrow!

I also received a message from Dr. Martinez’s nurse. Dr. Martinez is our genetic doctor. We had some genetic lab work done back in early September. The last call I received said everything looked normal, but they were still waiting on one test to come back. So….9 weeks later the results are in. The nurse’s message said the organic amino acid results show an elevated level of enzymes and acid so the doctor would like for us to have more lab work done to look closer at this particular issue and other possible metabolic disorders. That’s all I know. Once I receive the order in the mail, I guess we’ll have to go in for more lab work.

My pediatrician made a referral to a local allergist, but I still haven’t heard about when the allergy testing will take place. My hope was that we could get started on this before Christmas….but we are just sitting tight and waiting.


Juggling many balls in the air,

Ginger

Cincy Details

Listen to my words, Lord,

consider my lament.

Hear my cry for help,

my King and my God,

for to you I pray.

In the morning, Lord, you hear my voice;

in the morning I lay my requests before you

and wait expectantly.

~Psalms 5:1-3

I have been fervently asking God to open doors for us in Cincinnati. The closer our trip is, the more nervous I feel. We are traveling such a long way to see this doctor. I just don’t want our trip or our efforts to feel in vain. Well, yesterday my prayers were acknowledged! Nurse Julie called from Cincinnati Children’s Hospital and asked if we could change our appointment from 1:00 to 8:45. She said that Dr. Pentiuk had reviewed Stanton’s medical records and thought he would benefit from also seeing the feeding team. This means that Stanton will now be observed and assessed by an entire team of experts who deal with feeding disorders: an Occupational Therapist, a Speech Therapist, a Psychologist, a Dietician, a Physician, an ENT, a Genetics doctor and the Gastroenterologist, Dr. Pentiuk. Nurse Julie said we should plan on spending 3 – 4 hours at the hospital.

Now, I can look forward to our trip! I’m really even excited about it! Today, the nurse practitioner from the feeding team called and spent 45 minutes on the phone with me asking detailed questions and going over everything for our visit. She let me know that the assessment room has a DVD player and that we will have some down time between meeting with team members. We are to bring some things that Stanton will eat or try to eat as well as his Elecare and any bottle and sippy cup he will drink from. She let me know that after each team member has had an opportunity to interact with Stanton and talk to us, they will all meet and come up with recommendations on what to do next. These could include tests, therapy interventions, etc. The nurse practitioner let me know that each person we meet with will be billed separately to insurance and we will need to be prepared to pay multiple co-pays. I just grinned and thanked God over and over for providing for us…..our insurance has pre-approved Cincinnati Children’s Hospital as an “in network” provider!!!!!!

Guess where John’s college roommate lives? In a suburb of Cincinnati! He actually works only a mile or so from the Children’s Hospital! So, we will get to hang out with him and his sweet family over the weekend. I just feel completely overwhelmed and humbled that God has perfectly arranged each and every detail of this process so that things just fall into place for us to go, focus on seeking the best care for Stanton and have a little fun too!

 

Our ENT Rocks

We just returned from our post-scope follow up visit with our new ENT at Ochsner’s in New Orleans. In April, Stanton had a bronchoscopy in combination with our last esophageal and upper GI scope. Why did we end up needing a bronchoscopy? In January, Stanton had tons of constant congestion and 2 episodes of pneumonia. So, in February, after battling our ex-ENT to please just look at Stanton’ s throat, our pediatrician ordered a soft tissue x-ray of his face and neck. We were thinking his adenoids might be inflamed and/or large and may need to come out, however, the x-ray showed no issues with his adenoids or tonsils. Instead, we were alarmed to find that Stanton displayed a severe narrowing of his airway. Once our pediatrician saw how small Stanton’s airway was, we were sent directly to an ENT/airway specialist at Ochsner’s and the ENT, in turn, scheduled this bronchoscopy. This procedure allows the ENT to look at the airway system. Through the bronchoscope, they evaluated Stanton’s respiratory system, including his voice box, wind pipe, and airways for any abnormality or infection.

We learned they day of the scopes that his airway had returned to normal size and no abnormalities or infections were found. This was great news! But – I had to wonder, what does this mean?

The visit was a really good one! The ENT completely congratulated us for being aggressive and starting the elemental diet before the scope (switching Stanton to the special new formula, Elecare). He credits this with Stanton’s airway healing. No food = no reaction.

I brought my gag/vomit/poop/food journal along to the visit so I could show the doctor our one attempt at introducing food/episode since the clear scope. We introduced eggs and that was a complete nightmare! Stanton, of course, loved the scrambled egg and ate almost half of the egg! John and I were amazed, as we watched a child who shows no interest in food or eating, actually seem to enjoy the egg. Well, two hours after eating the delicious eggs, the screaming, retching, gagging began and was quickly followed by uncontrollable vomiting. Poor Stanton vomited profusely for 3 full days and nights. He aspirated while vomiting and we ended up with fluid in the lungs, swollen throat, etc., etc. Not a fun way to spend the week – steroids, breathing treatments, etc. He ended up with this rash on his face, which our pediatrician said was from vomiting so much.

The ENT said the egg episode clearly verifies Stanton’s diagnosis of Eosinophilic Esophagitis (EE) and we should wait 6 weeks before introducing another food. Ugh. The waiting is the worst! Then again, the trauma that spews after trying food is pretty awful too.

The ENT said he’s amazed that Stanton is maintaining his weight and looks so healthy! We hear that with every new doctor we meet. They see his extensive records and notes and surgeries and expect to see a pale, lethargic child. I suppose having severe EE, feeding aversions and swallowing issues are all serious issues that could indeed produce a unhealthy looking little one. We work so hard at keeping Stanton healthy. This is no easy task….but we’ve made it our mission.