The Traveling Blues

A whole week has gone by without any posts. I guess you can tell that we’ve been fighting an uphill battle with Stanton’s health over the Thanksgiving holiday. We don’t ever really travel or go anywhere. It’s simply too hard and Stanton always seems to get sick. Just a couple of weeks ago in Cincinnati, we ended up in the ER. Stanton swallowed some bath water, got upset, started throwing up and aspirated. The bathtub episode was quickly followed by the tell-tale strider breathing which landed us in the Cincinnati Children’s Hospital ER.

This time around was a bit more sneaky. After about 30 minutes in the car, Stanton started coughing. The coughing continued to escalate as we drove 2 ½ hours north to Mimmie’s house (John’s grandmother). He played well at Mimmie’s and had fun playing in the cold pasture – so far to run without restrictions! After lunch we traveled 2 ½ more hours north to my grandmother’s house. My Mamie moved into this very house when she was just 16 years old and a newlywed. My grandparents have both passed so the house is now empty, however, my mom and aunts stay at the house frequently and keep it ready for company. Stanton’s coughing continued to brew and grow deeper and more frequent. By the night, we were up most of the night with him coughing. By Friday, the wheezing and shallow breathing kicked in.

Friday night my Dad’s side of the family all gathered at my Uncle Ed’s house. Uncle Ed is a family doctor. He greeted us at the door and immediately noticed Stanton’s cough and breathing. I quickly explained what was going on and he asked to take a listen. He asked when Stanton’s last aspiration episode was and I let him know it happened two weeks ago in Cincinnati. Uncle Ed asked if anyone had diagnosed Stanton with asthma. He said the wheezing was really deep and in Stanton’s left lower lobe. He went to his clinic and brought back a nebulizer and some steroid shots. Every two hours he gave Stanton a breathing treatment, but after two treatments, the wheezing wasn’t any better so he gave him a shot. After an hour, Stanton’s wheezing was completely gone and we received the green light to drive home where our panda bear nebulizer was waiting in the closet. Uncle Ed said we should give Stanton a breathing treatment every two to four hours.
So, here we are at home, with a child who is miserable….coughing constantly….can’t get comfortable….can’t sleep for more than 45 minutes at a time….fighting the breathing treatments….won’t eat or drink anything……shall I go on?

Why does this always seem to happen on a holiday or a weekend, when all doctor offices are closed. Is this serious enough to warrant an ER visit? We haven’t decided yet…
John and I have two view points as to why Stanton got sick this go round, so I thought I’d share both and you can decide for yourself:

John’s version:
Stanton started coughing in the car. It got worse and worse and I think Stanton was allergic to something in the car. I did pack some hunting clothes that have been in the attic and maybe they were dusty/moldy. Then we slept in an old, old, cold house which I’m sure didn’t help.

Ginger’s version:
The night before we left, Stanton ate ¾ of a scrambled egg. The team in Cincinnati suggested we try offering it again to monitor the response. Stanton tried a couple of bites of egg in Cincinnati and got a big whelp on his checks. We offered him egg last week, but he only licked one bite and didn’t swallow it. I couldn’t believe he ate nearly the entire egg this time. He didn’t get a rash, or get sick and keep it down! The coughing began the next morning accompanied with a huge dose of all around grouchiness, and you know the rest of the story. From what I’m reading and learning about the elimination diet, this could be a response to the egg. Stanton’s track record of illness has 99.9% of the time been linked to his digestive system so I’m apt to look there first and find a connection.
Since I’m the one writing this blog (Ginger) I thought I’d say a bit more about my theory...

...The rules of an elimination diet are to offer a small amount of the test food and continue to offer it throughout the day so that by the end of the day, a “normal” amount has been eaten. Watch for symptoms. If symptoms occur during the night or the next morning, the tried food could be to blame. You are to stop offering the suspect food until seeing the doctor. Symptoms can include canker sores, bed-wetting, tightening of joints, ear fluid build-up, bowel problems, hives, and asthma. Children with delayed gastric emptying may have delayed reactions as the food is slowly being processed in their bodies.
Today is now a waiting game. Thank you in advance for your prayers and positive thoughts! I’ll try to keep everyone posted with the choices ahead of us.  I also must say a huge THANK YOU to my Bryant family.  Uncle Ed really helped Stanton and kept us from going to the hospital.  All my sweet cousins....I'm so sad I couldn't really visit with any of you, but it was great to just be with you all.

Ginger

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!