Tag Archives: medical

An Unexpected Setback

Braxton had a follow-up Swallow Study today and we got some unexpected news.

A few weeks ago we followed up with our Sleep Doctor/ Pulmonologist and I mentioned to the PA that Braxton had recently started making a strange noise while he was eating, like he was clearing his throat and then swallowing his food. I didn’t think much of it until we were at the appointment and something told me I should tell the doctor about it, considering Braxton’s history of aspiration (swallowing liquid into his lungs). The PA was concerned enough to talk to our main pulmonologist who decided we should order a new swallow study. She also listened to his lungs to make sure they were clear, and they were.

Here is a video of what we were seeing:

 

We didn’t make any feeding changes and I made sure to talk to our Speech and Occupational Therapists, we were all stumped. Our Speech Therapist thought it could have something to do with all the ear trouble we have been having this summer since the ear and throat are all connected. It would certainly make sense if swallowing was hurting his ears and he was trying to relieve the pressure or whatever it is he was feeling. He still seemed to be swallowing normally and wasn’t showing any signs of aspiration, so we continued with our current feeding regimen.

IMG_2347Today we finally had the swallow study. I went in not expecting much of anything, but we may have a new issue to worry about.

During the test the speech therapist and the tech kept saying they saw Braxton regurgitating the food which is part of the reason we are seeing multiple swallows and the throat clearing. There were also a couple instances where it appeared he *might* be aspirating again. He was surprisingly calm and cooperative the entire time, so aside from the Barium not being so tasty, he did exactly what we would see at home. Once completed, we sat in the waiting room while the speech therapist and tech reviewed the recording to discuss their findings and recommendations with us. It took much longer than it has in the past.

 

The speech therapist finally came out and let us know that while she is not able to give us an official diagnosis, what she was seeing appeared to be an esophageal dysfunction. When you eat, your esophageal sphincter opens to allow the food to pass and then it closes so that air does not enter. Braxton’s upper esophageal sphincter is sometimes opening properly and other times it is opening and closing before his food gets to the esophagus. And there are times that the esophagus regurgitates the food which gives him trouble with swallowing. She also noted that even when everything works properly he is taking two or more swallows per bite.

So, now we need to figure out what exactly is going on with his esophagus. We’re looking at some kind of structural anomaly that we haven’t seen before. The speech therapist said she’s never seen what she saw today with Braxton. She also called in another radiologist who also said she’d never seen this. (Of course! Braxton has always been quite the medical mystery).  The plan for now is continue with oral feeds, but she was insistent that we proceed with caution since we don’t know what is really happening. We will need to cut back on his food and give him smaller bites since he did seem to tolerate that better than the larger bites. She will also be making a recommendation for us to get back in to the Aerodigestive Clinic so that our ENT, GI, Pulmonologist and a Speech Therapist will all be able to see him at the same time so we can all discuss what’s going on and formulate a plan.

I’m really not sure where we go from here, but obviously, this was not the news we were expecting. This could explain why we have had some difficulty getting Braxton to move up to thicker foods and different textures. Cutting back on feeds will certainly be a setback we didn’t expect. But, like all things, I know we will make it through.  I hope we can get some answers and clarity very soon. And to think I almost didn’t even bring it up to the doctor!

I am doing my best to stay away from Dr. Google today and patiently waiting for a follow-up with our doctors. Braxton and I enjoyed some time outside this afternoon on his new swingset. His sweet smiles and laughter filled my heart, and for a moment all was right in the world.

 

IMG_2346

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Undiagnosed: Medical Refugees Launches Kickstarter

Several months ago, I had the honor of sharing Braxton’s diagnostic journey with a crew who is currently filming a documentary about Undiagnosed patients across the country.

Braxton’s story is featured to speak about the importance of finding a diagnosis, how a diagnosis can give hope and direction for medical care.  Without a diagnosis, families are left in the dark with no way to plan for the future.  The not knowing is the worst part of the journey.  This documentary aims to bring light to this important population and revolutionize the healthcare industry.

The Kickstarter project for this film kicked off today.  Watch the trailer and please read the letter below and consider donating to help complete this film.  Share this with everyone you know.  The more money we help raise, the faster the documentary can be completed! Thank you for your continued love and support of Braxton.

 

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Dear Friends,

Our Kickstarter crowd funding campaign to raise $150,000 to complete Undiagnosed: Medical Refugees, a groundbreaking documentary film, has now officially begun!

For those of you who haven’t yet heard about this remarkable feature film, Undiagnosed is the untold story of the millions of people just like you whose lives have been devastated due to unknown or unsolved illnesses. What understanding more about the predicament of children and adults in this difficult situation could offer to the future of medicine is astounding, yet this population remains virtually ignored. The creators of this film are dedicated to starting a movement to benefit individuals with undiagnosed illness, as well as the healthcare system they must depend on for assistance.

The success of this campaign  completely depends upon public support, so please donate what you can (BTW there are some great “rewards” your donations) and most importantly, forward this email to as many people as possible– family, friends, co-workers, and any networks in which you participate. Please bear in mind that we must raise every dollar of the $150,000, or else we receive absolutely nothing!

Our team has been shooting this movie for over a year – without pay, and funding everything out-of-pocket. We are now 80% finished with production and need your help to raise the funds necessary to bring the film’s vision to fruition.

You can see the powerful movie trailer and campaign video, as well as follow this documentary’s progress and success on the Kickstarter campaign page:

https://www.kickstarter.com/projects/792434652/undiagnosed-medical-refugees-a-groundbreaking-docu

From the bottom of our hearts, thank you for your generosity in supporting this great cause!!

 

Sincerely,

Crystal Shearman
“UNDIAGNOSED” I PRODUCER UNDIAGNOSED FILMS, LLC

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Bittersweet Memories

Today, we had the opportunity to re-visit the place where this journey all began. St. David’s Hospital held it’s annual Neonatal Intensive Care Unit (NICU) Reunion and this is the second year I’ve been lucky enough to take Braxton back to visit.  It’s nice to celebrate and see other families and their success after having spent time in NICU.  But there seems to be a flood of emotions for me that comes with this wonderful event. Most babies who spend time in NICU are there because they were born prematurely, but not Braxton. Braxton was full term and at 8 pounds, he was a giant compared to the other NICU babies.  We felt out of place from the start. We were NOT supposed to be here. This is NOT how the story was supposed to go.  Day after day we walked by the teeny tiny fit in the palm of your hands babies to visit our 8 pound 21 inch long baby boy who no one could give a definitive answer as to why he was being kept, and yet just like the teeny tiny babies, he was fighting for his life.

Braxton was in NICU for 3 weeks and 3 days, definitely the toughest 3 weeks and 3 days of our lives.  The initial neonatologist who admitted Brax was convinced Braxton had a terrible genetic syndrome that would quickly end his life, from that day on Braxton has been defying all expectations and continues to stump the medical community.  We are now 16 months into this journey and still know nothing more than we did those first few weeks of life.  As I look back to those first weeks, I remember all of the nurses who worked with us and cared and loved Braxton so much.  The nurses were amazing.  My first night released from the hospital, we drove to the hospital where Braxton had been transported to and sat there for several hours and the nurse in charge of Braxton that night was so patient and empathetic. She answered all our questions as best she could, offered us advice and encouragement with stories of other babies who’d come and go in the NICU.  She helped me get through all the wires so that for the first time in 36 hours I could hold my precious baby boy. We laughed as we watched Joseph try to change Braxton for the first time. Poor guy was terrified of all the wires and used about 10 wipes for his first ever diaper change.  I cried as I held Braxton because I had no idea what the future would hold for him.  We finally left and went home to try to get some rest before we’d come back to see our baby boy.  This was our life for 3 weeks. Wake up, eat, get dressed go to the hospital, come home to be with Aileen, try to explain to her why she couldn’t go see her brother, try to love on her and make sure she knew we hadn’t forgotten her, then back to the hospital to visit and say goodnight to little man, home to bed to wake up and do it all over again.

Every day we went to the hospital and as our nurses changed, I was happy to see Braxton in such capable hands.  They all knew what was going on with him, if the doctor came by while we weren’t there they’d call and update us, they listened, they talked, they cared.  I’m so thankful for all of them.  While NICU holds many sad memories of what might have been, what could have been, I’m also reminded that they did everything they could to make sure Braxton stayed alive.  And I don’t think we ever thanked them enough.  I’m fortunate to be able to see them again and catch them up on what Braxton has been going through and to be able to thank them again for doing so well with him.  Bittersweet. So many memories, so many emotions, and so many blessings.

The event was really great. This year, Aileen was able to go with us and she definitely had more fun than Braxton, but that’s ok.  The kids were able to wear costumes so that was pretty fun.  I put Braxton in some Longhorn PJ’s that happened to have a Bevo hood, so he was Bevo 🙂 Aileen wore her vampire princess costume and thoroughly enjoyed all the goodies they had, cotton candy, games, face painting, balloon animals, and cake.  I saw a few of the nurses who worked with Braxton and they were all happy to see him doing so well.  Albeit emotional, today was a great day and I’m so grateful that St. David’s puts on this event and I look forward to next year and every year after.

Bevo Braxton

Where’s Braxton?!

Bevo Crawling

Bevo Braxton crawling through the living room

Bevo Braxton

Braxton crawling around

Bevo Stampede

Bevo stampeding through the house!

Face Painting

Aileen had her face painted at the NICU Reunion for her baby brother

 

// Edited to add this photo courtesy of St. David’s 🙂

NICU Reunion

Having fun at the NICU Reunion

 

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Gastric Dumping Syndrome

Well, this post was pre-empted by yesterday’s exciting events! But, if I don’t write it now I’ll forget. Mommy brain.  Yesterday, Braxton had an appointment with his GI doctor to discuss results of his Gastric Emptying Scan and follow-up on feeding difficulties.

The test was originally done to check for gastroparesis – delayed emptying of the stomach, which the doctor thought could have been brought on due to the pneumonia Braxton had in August. The scan actually revealed the exact opposite! GI has determined that Braxton has Gastric Dumping Syndrome. I’m not going to explain this nearly as well a our doctor did, but here goes… the short answer is Dumping Syndrome is where the stomach empties too quickly. Doesn’t seem like a big deal, but it really is – when the stomach empties too fast the formula gets to the small intestine too soon which signals the pancreas to increase the amount of insulin the body is producing. [Didn’t think you were going to get a science lesson today, did ya?]  His body then absorbs the sugar of the meal way too quickly while his body is also producing insulin. As the level of insulin increases the sugar level peaks and then crashes which can cause vomiting/diarrhea/sweating/lethargy [all problems Brax has had during/after feeds]  This would explain the vomiting Braxton has had when feeding. There is “early” dumping where symptoms can start immediately with feeding and “late” dumping where symptoms don’t happen for 1-3 hours after feeding. Braxton has had both; there are times when he’ll vomit IMMEDIATELY upon starting a feed and times where it’s about an hour later.

So, how do we fix it?

Thankfully, it’s a pretty easy fix. The vomiting is caused by the rapid increase then rapid decrease of sugar levels in the body, so the doctor wants us to add corn starch to each feed. I know what you’re thinking – corn starch?? Well, corn starch is a complex sugar that takes the body much longer to digest and absorb. It also thickens the feed so it moves more slowly through the digestive system.  Since the body won’t be able to absorb the sugar so quickly, this *should* stop the vomiting and we *should* be able to increase rate of feeding and get Brax back to where he was before this big mess. The doctor said “I’m confident this WILL work….I hope” gee thanks doc! =/ He really wants us to work up to feeding Brax 8 oz [he’s currently at 6oz] per feed and get him off the pump again. 

Last night I did try the corn starch and gave him his usual 8oz for the evening feed, but instead of doing it slowly, I ran it at slightly higher than his day feeds annnnnd he kept it down! wooooo!! No coughing, no gagging, no vomiting. So, maybe..juust maybe we’ve finally got this thing figured out! Today, I sent him to daycare with just 7 ounces each feed, just in case it didn’t work as well.  I’m going to very slowly jump the speed of the pump everyday until we can try to get him off of it. 

Also, with regard to actually feeding by mouth. GI would like us to try Braxton on Periactin. Periactin is a medicine that helps to increase appetite and also helps to expand the stomach. GI’s goal with this is to MAKE Braxton hungry so he’ll WANT to eat by mouth again. He said the effects of it wear off after a few weeks so we’ll have to do cycles. Give the medicine for 3 weeks, give him a week break, then start him on it again.  As an added bonus, Periactin is an antihistamine so hopefully it will also help Braxton with all the added congestion he has going on. We see the Ear, Nose and Throat doctor tomorrow and I’m going to bring up the persistent sinus congestion and see what he thinks about going in and cleaning the sinuses out or maybe just seeing what the Periactin does.

*fingers crossed*

Let’s hope this plan works!

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When it rains, it pours

Yes, I’ve said it before, and no, it won’t be the last time either.  We had an extremely busy morning today.  Braxton woke up today with green gunk draining from his ears =/ Thankfully, we already had an appointment with his pediatrician scheduled at 8am.

Turns out Braxton has a double ear infection [his first since he had his tubes placed in April] and a sinus infection. That explains all the green junk from his ears and in his tummy yesterday.  More antibiotics to help the sinus infection and ear drops for the ear infection. Poor kid. I swear we’ve been in the pediatrician’s office at least every other week for him.  He’s been on more antibiotics than I care to mention.  And with the ear drainage we can’t put his hearing aids on. 😦 We’ve got to let his ear have air and let it drain and heal before we can use them again. Terrible setback.

After the pediatrician’s office we headed over to the Hand Surgeon’s office for Braxton’s post-op visit and bandage change.  Stupid mom forgot to give him pain medicine before we got there. I have NO idea why I didn’t think about it before we got there. But my heart just broke and I kicked myself once he started screaming and wouldn’t stop.  He was happy when the bandages came off, but once they started cleaning the site and putting on fresh bandages he started crying uncontrollably and it just tore me up.  PA said the surgery site looks good and is healing well.  The skin graft looks ok too. The stitches were still in place and she said they’d dissolve on their own. But oh my goodness! The Dr told me the site was small and only about half an inch, that graft is definitely NOT small! Braxton has a 2 inch gash on his arm right now. Sure, once he’s older you won’t even notice it, but for now his little arm looks terrible 😦 It took a good while for me to be able to calm him down. He cried off and on the whole way home.

Once I got home I gave him his pain medicine, went ahead and gave the first dose of antibiotic, and put the ear drops in. Even still, it was a good 20 minutes before I got him to really calm down.  I hung out with him for a minute before I had to head out to work and take him to daycare :/ He had a pretty good day though. I called to check on him a few times and when I picked up they said he had a pretty good day. No vomiting today (yayyyy) and he was actually pretty happy and laughing and smiling with the teachers and the other kids.  I can’t say enough nice things about our daycare. I love them all and I’m so grateful they are so good with Braxton. They all love him so much and take good care of him.

Now if we could only get this storm to pass, everything would be wonderful again.  I sure hope these meds kick in quick!

 

Brax finally resting after a long day. Poor kiddo.

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