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.

Fervor

Note:  I wrote this post a month ago!  Stanton ended up being admitted and I just haven’t had to post

My poor sweet Stanton has eyes so red and watery he can hardly see; a nose running a marathon and a cough that rattles our windows. It’s 4:30 am and now that the throw up has come and gone and the breathing treatment is over, I’m sitting beside him, anticipating every irregular, labored breath.  He brings his shoulders up as he wheezes to breath in and moans as he breathes out. This moment…all too familiar….all too “normal” for us… simply sucks. 

As we cuddled on the couch this morning, I knew this moment was coming.  His nose had started running and he was constantly rubbing his eyes.  He also refused all food and Elecare (his medical formula) which is a tell-tell sign….watched him carefully study this painting we have hanging in our living room.  

“What are you looking at Stanton?”

“The colors.”

“What about the colors?”

“Blue is a good breath and red is bad.”

“What does a blue breath sound like?” Stanton took a nice, slow, deep breath in and out

“And what does a red breath sound like?” Stanton gasped for air and coughed.

Such wisdom for such a three year old. 

This painting is titled “Fervor” based on Romans 12:11 “Never be lacking in zeal, but keep your spiritual fervor, serving the Lord.”

As I sit here today, in my pjs, with three day unwashed hair, holding a baby and caring for a chronically sick three year old I find myself wondering….do I still have fervor?  Is this painting still what my spirit looks like?  I have to dig deep inside myself – but I’m happy to find it.  Fervor, you are there!  I will use this gift to stay true to our goal = a complete healing for Stanton.

Stanton spent four days in the hospital after this post

Reminder for Me

I mentioned in an earlier post that my mantra for the new year is Romans 12:12:

“Rejoice in hope, be patient in tribulation, be constant in prayer.”

Imagine my surprise when I found this wonderful interpretation on Pinterest today!

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. 

Featured

I'm so excited!  I just got off the phone with a representative for Elecare.  This is the medical formula Stanton has been on since he was 20 months old.  They ran across my blog and would like to feature Stanton's story on their website!  So, a film crew, make-up artist and interview person will all come and film our family this Sunday and Monday!  It's so exciting and a bit crazy.  I hope Stanton cooperates and that we can appear calm and natural.  Once the segment is done, I'll be sure to announce it here!

Cincinnati Children's Hospital also called today and said the earliest they can schedule Stanton is the end of February.  I said that was fine, so we should have definite travel plans soon. 

The new year is up and running....I do look forward to answers coming this year!

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