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  We have temporarily withdrawn Stanton from school as we are trying everything we can to keep him from getting sick and losing more weight.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.

Circumstances

I’m sitting in the waiting area while Stanton is in speech therapy today.  As I watch the variety of folks come and go, I realize that I have so much to be thankful for.  Although I have a chronically sick little man, with a future that is cloudy and unknown, he is so precious.  I do see God’s perfect love reflected on his face. He is silly and witty.  He talks up a storm about everything, especially warning signs.  He loves robots, rocket ships, airplanes, letters and dump trucks.  He is so acutely aware of the world around him and takes absolute joy in investigating his surroundings.  

I spend most of my time investigating options for his treatment plan.  Over the past six months and in the hospital, Stanton has lost lots of weight…so much that he is now in need of a feeding tube.  We are playing the waiting game to see the various specialists it takes to move forward with this surgery.  I called our team at Cincinnati Children’s Hospital and Stanton’s case will be presented to the Aero-digestive Team on Wednesday.  The nurse should call after the team comes up with a plan of action for us.  This does mean we will soon be back in Cincinnati for tests, procedures, meetings and possible surgeries.  I am hopeful that we will connect with a “local” team that will be willing to partner with Cincinnati – but so far that just hasn’t happened.  

On Thursday we will see a pulmonologist at Tulane.  I’m really curious about this appointment and what will come of it.  I will post our new plan of action after our Tulane appointment and once I hear back from Cincinnati.  Until then – our family really appreciate your prayers, thoughts, and positive vibes for Stanton!

“Circumstances may cause interruptions and delays, but never lose sight of your goal. Prepare yourself in every way you can by increasing your knowledge and adding to your experience, so that you can make the most of opportunity when it occurs.”  Mario Andretti

What Can You Handle?

“I know God won't give me anything I can't handle. I just wish he didn't trust me so much.”    ~ Mother Teresa

Stanton continues to have a respiratory crash every three weeks.  It's difficult to handle these illnesses so close together and yet so predictable.  We have one week of horror, then two weeks of good.  This time around it's put us in the hospital.  Stanton has pneumonia that he just can't shake.  It seems to be lingering in his lower left lung.  It's sad to admit, but being at the hospital has been a bit of a break.  Here, I'm only mom.  My only job is to comfort my child.  I can focus all my energy and efforts on him and his needs.  This, I can handle.  The nurses and hospital staff take care of everything else....the medication, the breathing treatments, even the food and clean sheets!  I am thankful to be in a place that is comfortable so I can focus on my job...being mom.

The pediatrician on call has witnessed what I deal with on a daily basis:  the fight to get Stanton to take anything by mouth.  One sip of apple juice at a time; the eye dropper of water; the throwing up of forced medications, the refusal of food.  He's really had nothing to eat or drink since Saturday afternoon and is, therefore, IV dependent while here.  Today, however, he's finally reached the bottom of an apple juice box.  It took all day - but he did it! I hope this is the start of a better night and day tomorrow.  We can't go home until he begins drinking and taking his formula (Elecare).

After watching our oral battle, the pediatrician has raised some tough issues for us to consider and pursue.  We first will see a pulminologist at Tulane.  That leads to a series of "What If" scenarios that I'm not ready to share.  The pediatrician wants to talk to our primary pediatrician about making a call to our team in Cincinatti.  The doctor feels it should be a phone conversation, not just a faxing of records.  This again leads to some difficult choices and scenarios that we must face.

Am I ready for this next, difficult journey?  Can I handle what lies ahead?  Why does God trust us enough to push my family down this stoney path? 

 "It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

What's new?

I know, I know….my past few posts about Stanton’s health have been the same story!  We continue to face the same issues – nothing health wise has really changed.  He’s loving school and really loves being a big brother to his 5 week old baby sister!  It’s been interesting trying to balance his health with a newborn baby girl!  So many have asked what’s next?  Where we will push next; what doctor we will visit.  I am just recovering from having a baby….and am not ready to travel with one so little and the other chronically sick.  I do have some ideas of where I’d like to push and investigate next, I’m just waiting for baby girl to have some vaccines and for us to get through the holidays.

Stanton awoke on Halloween morning with a terrible cough.  He spent the entire day sounding like an old man; coughing and sputtering.  I gave him extra breathing treatments trying to keep him going so we wouldn’t miss trick-or-treating.  That night we made it to my sister’s for a party and trick-or-treating.  Stanton made it to about six houses before needing to sit in his stroller.  I literally had to talk him into knocking on two more doors before we decided to call it a night.  He had fun while it lasted, which wasn’t very long.  When he has a respiratory flare up, the wind is truly knocked out of him and he simply has zero endurance.

As a mother, my heart is broken for my son.  I realize he doesn’t know things should be any different, as they’ve been this way for his whole life.  I acknowledge that I am in the midst of grieving this reality.  I wish he knew what it felt like to really feel good.  I’m not sure he’s ever had a day where he felt “normal” inside.  If it’s not his cough and difficulty breathing, it’s a pain in his stomach.  If it’s not his stomach, it’s a reflux kind of day.  If it’s not reflux, it’s constipation.  If it’s not constipation, it’s a day of blow-outs.  If it’s not a day of blow-outs it’s a day of low energy. If it’s not a day of low energy, it’s a day of unexplained hives.  If it’s not hives, it’s a hunger strike kind of day.  And so on…    

I used to pray and hope for healing, but now I find myself asking simply for today.  I pray that today Stanton will have a good health day.  I pray that today, maybe a doctor or new idea will present itself.  I pray for energy to continue aggressively fighting this battle.  It’s hard to look past today, for in the past when I have, I’ve just ended up disappointed or with more questions.  So, to survive all of this with some sanity, I have learned to take things one day at a time.  As I’m typing this, I realize it sounds depressing…..which I’m not!  This letting go has  really allowed me to enjoy just being in the moment, which has been so freeing for me! Before Stanton I was a planner and very “type A.”  He sure has taught me to really let go, go with the flow and be flexible!

Speaking of being flexible – he’s awake from his nap, crying and gagging…I’ll post more when I can!

Life with Two

I'm happy to announce that Stanton LOVES his new little sister! He pulls everyone who stops by over to her and says "look at my baby sister!"  He's constantly wanting to love on her and kiss her.  Here he is meeting his sister, Miriam Sage, for the first time.

Every Three Weeks

Well...I'm bummed to say that Stanton has not been able to break his cycle of crashing every three weeks.  This last episode was exactly 3 weeks to the day!  Our pediatrician says it's got to be allergy related as whelps and rash indicated a histimine response.  But I have to wonder, what kind of allergy shows up in a cycle and only rears it's head every three weeks?  To me, it feels like a virus or hormonal or immune related.  Since we've been to four allergists and three immunologists, I do feel a bit flustered.  I've spent some time searching his predictable pattern on-line (whelps on face -- then runny nose -- then sneezing and allergy eyes -- then rash on torso -- then violent vomiting -- then drop in oxygen levels) and so far am empty handed.  It seems like the "rash" for everyone else in the world could follow a common cold or leads to terrible things like seizures and death.  Neither of which we've experienced; thanks be to God!  I'm determined that our consistent clues do mean something more.  I've just not found the right article, research or specialist to investigate the pattern.

He's happy once again this week, but still has a hard time catching his breath when playing as boys do.  Here's a recent picture of our sweet "Bubble Boy."

Stanton is very excited about becoming a big brother! Our baby girl is scheduled to arrive on Friday, September 23rd!  Stanton asks everyday when I'm bringing her home. Our family sure appreciates everyone praying for us, sending positive energy our way, thinking of us - whatever your style is.  My heart's desire is that baby girl arrives into this world strong and healthy and that big brother Stanton stays well for the next couple of weeks as we transition home with the new baby. 

"The LORD bless you and keep you; The LORD make His face shine upon you, And be gracious to you; The LORD lift up His countenance upon you, And give you peace." ~ Numbers 6:24-26

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