More Medication Please!

This week we started Stanton on erythromycin three times a day. It came in a liquid suspension and it’s grape flavored. So far, I’ve been able to hide it in his “milk” and he hasn’t seemed to notice. I already hide his Prevacid/BufferBabies combination in his milk and it too has a sweet, strawberry flavor. I guess the grape and strawberry flavors complement one another! Erythromycin is an antibiotic that can speed up stomach emptying. The team we met with in Cincinnati feels that Stanton has Delayed Gastric Emptying. While we wait to schedule the official test for this disorder, the team wanted us to go ahead and add erythromycin. The doctor assured us that there aren’t any major side effects and that if we don’t see a change in a month, we can evaluate other treatment options.



Delayed Gastric Emptying is also called gastroparesis. It’s a condition that affects the ability of the stomach to empty its contents even though there is no blockage. I’ve just begun to research this new diagnosis for Stanton and have stumbled upon some really fascinating information. The cause of gastroparesis is sometimes linked to the vagus nerve. This nerve is the only connection between the brain and the digestive system! The vagus nerve has the job of coordinating the movement of food through the digestive system. With gastroparesis, the food is retained in the stomach. Gastroparesis is considered a neuromuscular disorder and is the root of nearly half of all gastroesophageal reflux disease (GERD) diagnoses!!!!! I find this point really interesting as Stanton has now been diagnosed with both gastroparesis and gastroesophageal reflux disease…..hmmmmm……

For those of you interested in reading more about families dealing with gastroparesis, click here for some more perspective.


The more I read and learn about how complicated our digestive systems are, and how closely the digestive system partners with the neurological system, the more I feel we should move the MRI up on our list of tests to complete. Stanton’s developmental pediatrician recommended it over a year ago, but for financial reasons, we didn’t proceed. At our last developmental pediatrician visit, the doctor mentioned it again. I asked if we could wait and have the MRI done in conjunction with another sedated procedure. Stanton hasn’t needed a sedated procedure since April, which I realize as I type this fact, is major progress! So, I’m just thinking I should call and get it scheduled. 

Weighing the Options

Dr. Pentiuk, the GI we met at the Cincinnati Children’s Hospital, helped us understand all of Stanton’s possible issues by using a pie chart. He said that Stanton’s GERD (reflux disease) is one piece of the pie. The other pieces are food allergies, delayed gastric emptying and food related trauma. Out of these four pieces, we have the GERD under control with Prevacid and BufferBabies.  Dr. Pentiuk would like for Stanton to have a Swallow Study to just make sure his swallow is normal. He also recommended a complete allergy work up and both the liquid and solid versions of the Delayed Gastric Emptying scan.

So now we have a decision to make: do we travel back to Cincinnati for all of this testing? Or do we try to find a spot closer to home? There are pros and cons to both choices.

I’m hoping to learn some more details about both the Blair Batson Children’s Hospital in Jackson, MS and the New Orleans Children’s Hospital. I know both of these hospitals have great reputations for cancer…but I need to learn more about their GI and Allergy departments. The New Orleans hospital is only an hour from us and Jackson is about three hours.

I really loved the Cincinnati Children’s Hospital. They are not only experts in the field, but the entire facility was completely child centered. We experienced a true team approach in Cincinnati and Dr. Pentiuk, the GI, was very clear about what our next steps for Stanton should be. So far, I haven’t experienced that anywhere else we’ve been. I feel like I’ve been calling the shots, doing the research, leading and pushing the doctors, faxing the records, getting everyone on the same page...and it’s exhausting! It sure would be nice to find a doctor, close to home, who would step up, take the lead and fight for Stanton’s health.

If I can find a real team in Jackson or New Orleans, then we’ll stay close to home. If not – the decision to travel back to Cincinnati will be an easy one to make.



Cincinnati updates

Yesterday we met with Cincinnati's Aerodigestive feeding team for Stanton's evaluation. Several different people came in and out while we were there. During our 4 hour stay, everyone took time to play with Stanton, watch him eat, drink, or attempt and asked us lots of questions. The GI doctor came in after reviewing the team's observations. He said that he felt Stanton had three main areas we should really focus on. Each are is Its on specific issue, but when layered on top of each other, as they are in Stanton's case, they confuse and complicate one another. The first area we need to target is the skin patch allergy testing. The team here feels that bloodwork testing, which is what we've had, isn't reliable in little ones. There are obviously some hidden allergies going on with our little guy. The tean here feels that his marked improvement since switching to an elemental medical formula is just proof of hidden allergies. Cincinnati has encouraged us to find a pediatric allergist who works with elimination diet kids.

The second issue with Stanton is with his stomach. They feel pretty confident that he has Delayed Gastric Emptying. This means that his stomach isn't digesting the food he eats in a timely manner. Which could explain why he usually vomits 3-4 hours after something. There are two scans to diagnose this, and medication to treat it. We just have to get our local GI on board with this.

And the final area we need to address is behavioral. Stanton has lots of trauma and stubborness built around his food experiences. Those behaviors make meal time and even taking medication impossible. The team would like for us to find a behavior psychologist to work with us and Stanton. This would give us tools to help recreate positive experiences with food.

So this is our new starting place!

We were to begin some of the above mentioned testing today, but Stanton threw up last night and was left that all to familiar barking cough and stridor breathing. We were up all night with him coughing and screaming. So, instead of testing, we went to the er and got a breathing treatment and steriod shots in each leg. Stanton is finally sleeping back at our hotel.

Ginger

Anonymous

Dear Anonymous,

I must first say thank you. I love to learn that all kinds of people, from all walks of life, are reading my blog. My little guy, Stanton, is so lucky to have people from all over the world thinking of him and sending good thoughts his way.

You are right about the hard-working professionals at Cincinnati Children's Hospital. I cannot wait to meet them! They have taken so much time with our case. Everyone I’ve spoken with has listened and treated me like a mom – not a number. I’m thrilled to have the opportunity to take Stanton to such a top notch center. I believe that God’s hand was in the midst of me connecting with Cincinnati. I’ve heard from several other families that they’ve had to wait several months before being seen. Once our referral was processed and our medical records faxed, we had an appointment within the month! So many moms have also asked me how I fought to get my insurance to approve our upcoming visit. I haven’t had a “fight.” Information has come to me! For example, while googling “feeding clinics,” a sample insurance company’s policy on out-patient feeding clinics pulled up as number three on the search list. I wasn’t even looking for information on insurance – it just pulled up. I believe that God brought this information to me…which in turn gave me the insight I needed to get our visit pre-approved.

I also believe that God has also positioned people in our lives to help out. When my husband went to college, he was assigned a roommate. They didn’t know each other; had never met. But after living together in the freshman dorm for a year, they became great friends. We could have never known that this very roommate and friend from the past would today work just around the corner from the very children’s hospital we are headed to.

It is because of my faith in my God that I feel I can continue to fight for Stanton’s health. My God sustains me, gives me strength, offers me hope, gives me glimpses of pure love and so perfectly orchestrates things around me – it is more than any human could possibly arrange or fathom. I can’t imagine going through all of this without this kind of hope. The hope that my life matters. Stanton’s struggles have a purpose. It is something bigger than me.

Thank you, Anonymous, for your comment. We are all connected to one another in this world.  I hope that my answer hasn’t offended you in anyway. I only ask that you continue to send healing thoughts to my son.

From my heart to yours,

Ginger

In the Bible, 1 Peter 3:15 says that Christians should “Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect.”

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!

 

Two Major Victories!

We have been waiting on two important things and they both happened today!  These two "victories" are on total opposite sides of our fight for Stanton's health...but to me they both represent progress.

I recently announced that we are going to the Cincinnati Children's Hospital for an appointment on November 11th.  Very exciting news, right?  Well, what I haven't posted about is the fear that this visit may not be covered by insurance.  Because Stanton already has a Gastrointerolgist (GI), insurance companies consider visits, like the one we've planned to Cincinnati, a duplicate service.  We've been investigating how to get this visit covered.  After doing some digging, I realized that the GI we will meet with in Cincinnati also has specialities including Hepatology and Nutrition.  These extra specialities are listed in his bio, printed with his credentials and are included in all those letters at the end of a doctor's name.  We submitted a letter to our insurance company pointing out these extra services and have just been waiting.  John and I have also been looking at numbers, trying to work out a Plan B.....but as of today, we no longer have to worry about a Plan B.  Our insurance coordinator sent us an email stating that all services at the Cincinnati Children's Hospital will be covered at the PPO level!  This means they've approved the facility as an "in network provider."  God is good and continues to provide!

The other big news is this:  Stanton pooped today!  Okay - that may sound a little crazy?  He hasn't had a bowel movement since last Thursday.....seven days ago.  So, to us, it's not crazy at all!  It's a huge relief for our household. 

Thank you for your continued thoughts, notes and prayers. They mean so much to us!   

If I Didn't Have You To Wake Up To

Lyrics by Carole King and Gerry Goffin

What would I do if I didn't have you to wake up to each day

 

Who'd take my troubles and put them in bubbles and make them burst away

And where would I find the innocence that tells me it's okay

If I didn't have you to wake up to each day

Should I be strict, should I be mean, should I teach you discipline

The times say yes, but I say no, you'll learn it from within

I know that every mother thinks her child is the prettiest one

But you've got a smile that can't be refused, it even brightens up the sun

I wish I could make time stand still and just keep lookin' at you

But that's something even Old Methuselah wasn't able to do

I hope you come around to see me when I'm feeble, old and gray

Oh, what would I do if I didn't have you to wake up to each day

Oh, what would I do if I didn't have you to wake up to each day