Our SBS Story

My Second Oley Conference

My second Oley Conference is behind me- and again I was blown away by the support and companionship that proves strong through the community of those on nutrition support. I love the daily interactions, inspiration and love that surrounds the breakouts and meetings…old friends, new friends and life-changing connections.

This year, the opening ceremony was especially moving. Maybe this is because over the past year (and in each passing day) I realize the amount of strength that transcends our population- my awe only grows stronger. Award winners with smiles and tears telling their stories- beautiful. This year a very pleasant surprise was a speech by Dr. Stanley Dudrick, the Father of parenteral nutrition. I was blown away by the pushback that he received and his selflessness in the development of his therapy, an unfortunate theme that occurs frequently in the pioneering of cutting edge medicine. He didn’t hold back his struggles and I was awe-struck with that- especially presenting to a room of people with overwhelming challenges of our own. His story is one of inspiration- he’s saved many many lives as the result of his science and medicine- including Camden’s- one of my favorite moments to-date was being able to thank him for that (of course he wouldn’t take credit)- a wonderful man- a hero. (Google him- there is a plethora of information available- and he’s more than deserving of his own future post).

The rest of the week was orchestrated SO well- break-out meetings, presentations, the sharing of evidence-based information and COMPANIONSHIP. Oley brings together the power of the community, consumers, caregivers, vendors, etc. all empower each other over the course of days, and it’s an incredible experience to be a part of. I was very proud to see Boston Children’s in attendance this year, Camden’s rockstar team.

I can’t tell you what it’s like to share our story with a family who is new to the community, to offer them hope and resources or how it feels to speak to an adult with short bowel syndrome to gain insight into the physical and emotional impact that the disease has on Camden- the impact that he’s too young to share OR to learn of the new products and resources available to families over the past year- because people have committed themselves to progress for this population. It rocks.

If you are a member/supporter of Oley- I’m glad that you’ve found your way to them, I certainly am. If you are a citizen of the complex GI community and rely on nutrition support and haven’t heard of Oley- you’re missing out on such a RICH and SUPPORTIVE resource. I hope that you’ll visit their website to learn more about all that they offer and reach out to their incredible staff and volunteers to learn more. Next year Camden will be 3 for the meeting and the value of the organization will continue to grow as he attends the meeting with us and meets other ‘tubies’ like himself and relates to others who share a story similar to his… support makes for success ❤

www.oley.org

XO Meagan

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Our SBS Story

Helllllo GUS GEAR!

Gus Gear is a welcome addition to our SBS journey.

Gus gear3

A central line (especially on a toddler) needs to be secured so that it doesn’t pull and cause complications to the integrity of the (life) line. People ask me all of the time if Camden fusses with his g-tube and line… and really- he’s pretty good to leave his ‘accessories’ alone. However, even if a child isn’t one to explore and test the waters with the line- precautions are important- because external factors can wreak havoc when a line isn’t secured. For the past two-years we have secured Camden’s lines with a variety of dressings and tapes. We’ve tried them all. They work ‘ok’ but they only have roughly a day’s lifespan and they are hard on Camden’s sensitive skin…a necessary evil. There is nothing that breaks my heart more than when I have to remove tape from Camden’s skin- he winces and cries even when I try my very very best to keep him comfortable. I’ve been looking for an alternative for a very long time- another SBS mom suggested that I try Gus Gear… Boom! Really? This amazing wrap has been under my radar for 2 years? I’m so glad that I found it- better late than never.

I think that it’s important to try new things and always look to improve the quality of Camden’s care. With this, I believe that it’s important to share our experiences with others- so that we can learn and grow from one another (I read your posts too, SBS families!— thank you!). So here is the latest in the Glover household…

My thoughts on Gus Gear

  • No more need for harsh adhesives (and the resulting skin breakdown!)
  • The line and critical surrounding area are completely protected from little hands and unnecessary accidents
  • Gus Gear adds an extra layer of protection from blow-outs and/or light soiling
  • The material and construction is high quality and comfortable
  • It’s discreet under clothing
  • The securement of the line is well-planned and so much more than just a ‘wrap’
  • The straps and Velcro are adjustable for comfort and ease of wear
  • The design is solid and the wrap comes with clear instructions for use- I can sometimes be directionally challenged- but once I figured the usage out… it was easy peasy.’

BONUS: It was developed by a fellow SBS mom!

…now we need to rid the tape on Camden’s g-tube and come up with a more ‘stylish solution!’ #seeyoulatertape!

Have you tried Gus Gear? I’d love to hear your experience with this wrap- I’m late to the game- but I’m happy to be getting started with a safer alternative for Camden’s ‘life’ line. #gusgear #shortgutsowhat #shortbowelsyndrome #broviac #TPN #centralline #shortgut

Check it out at http://www.gusgear.net.

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Our SBS Story

Happy Memorial Day!

Happy Memorial Day, everyone!

We’ve had a lot of ‘firsts’ lately… my gratitude for this is two-fold- the actual events AND this is evidence that Camden is healthy enough for new horizons.

This weekend was the ‘grand opening’ at the lake, my parents new home. It’s been a dream of theirs for a very long time and I’m so proud of this accomplishment for them. They’ve been HEAVILY (ever) present in Camden’s health journey and it’s so fulfilling to see them turn this page.

Our weekend has been filled with friends and family. This has been Camden and my first trip outside of TN/BOSTON since we took the leap of Faith to move a nearly a year ago. Having family and friends around to spoil Camden with QT … (and a wide- range baby monitor during nap times) meant that Eddie and I could spend some time decompressing. Reflecting. Fishing. Laughing. Singing. Dancing (as humiliating as my moves are 🤦🏼‍♀️)… but still have Camden steps away. SO WONDERFUL.

Update:He is doing well and thriving. We are trialing hydration weans. He is happy (and has inherited my solid dance moves)and that makes my heart so full❤️😂

So today- on Memorial Day- I’m remembering our fallen soldiers and their ultimate sacrifice… and acknowledging how precious life is. Each little moment. But, I’m also spending time reflecting on the memories of the last two years and each and every up AND down that took us through to today. There have been no promises that we would get here… but we’ve worked and loved hard and Camden has beat SO many odds. These lakeside moments represent SO much. I hope that you take some time along with me today and memorialize and stop and remember how fleeting life is. Don’t take a single moment or person in your life for granted❤️🇺🇸 Be present and love

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hard, y’all.

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Our SBS Story

O’Canada- First Trip Across the Border

We did it! We managed to travel to and from Canada without incident! I held my breath the entire time… but it wasn’t necessary, Camden did so well on his maiden travels to his mother’s motherland. We celebrated a wonderful memorial for my grandfather and visited with friends and family- it was good for the soul. I’m sorry to those who I didn’t see who reached out and wanted to connect- it was such a busy family weekend, seeing everyone was an impossible task- we’ll be back!

So how did we pull off cross-border travel on nutrition support? It was MUCH easier than expected. Here’s what we did to prepare:

  1. Ordered supplies well in advance and coordinate this with ThriveRx (our home infusion company)
  2. Identified hotel location and nearest border crossing to ThriveRx and our team at Boston Children’s
  3. Requested a letter of medical necessity for supplies and nutrition support from Boston Children’s Hospital
  4. Identified the closest children’s hospital capable of addressing central line issues AND a back-up hospital in case of urgent need
  5. Researched minor border crossing requirements- it turns out children under the age of 15 can cross the CAN-AM boarder with a birth certificate only if they travel by land and are accompanied by BOTH parents
  6. We accounted for 3 additional days of back-up supplies- in case there were faulty, damaged, or list supplies

That’s it! Really- it was so similar to traveling domestically that I felt like there was something we were missing. Camden made it look so easy that we’ll be back- hopefully sooner than later- before my Tim Horton’s coffee buzz wears off 🙂 Meagan

maple leaf

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Our SBS Story

Thermometer Check-In

thermo

There are few things more important to short gut caregiver than an accurate thermometer. If you’ve heard me say it once, you’ve heard it a million times (but really it’s never too many when you have a central line)… 100.4 temperature means a 48-hour automatic hospital stay to rule out sepsis and start heavy hitting antibiotics. If you are like me… you start to twitch anywhere northwards of 99.0+ and I start eye-ing hospital clothes, the iPad charger and under eye concealer. Things can turn on a dime with an infection and I want to have Camden in the safest place possible- our local children’s hospital.

As a whole, we are constantly monitoring Camden for signs of fever, illness, stomach distension, diarrhea, energy level, skin tone… for me, looking at him means a full assessment. If any of the prior mentioned things seem off, Camden feels warm to the touch) OR it’s time for one of my ‘many-times-a-day’ spot checks, we assess formally for fever. We use a home thermometer to do this. We’ve been through so many thermometers- we wear them out and we are always on the lookout for the latest and the greatest. I’m going to save you time trying the bunch (there are SO many on the market and SO few that I would ever recommend) and hopefully I’ll save you MONEY in the process (they aren’t cheap!) Here are some of the contenders…

My opinion:

I wish I didn’t bother:

star

temple

CVS digital temple thermometer- $34.99

It appears with it’s 1 star rating on their website that others share my same feelings

Feels cheap and takes far too long to read (especially for a toddler)

http://www.cvs.com/shop/home-health-care/home-tests/thermometers/cvs-digital-forehead-thermometer-prodid-852652

Meh, at best:

starstar

braunround

Braun No-Touch forhttps://wordpress.com/post/gutsandgumptionsite.wordpress.com/1989ehead thermometer- $54.00

Inconsistent readings that read 1-2 degrees higher than other thermometers

Temps tend to jump drastically from reading-to-reading

http://www.target.com/p/braun-thermoscan-174-no-touch-forehead-thermometer/-/A-16522289?ref=tgt_adv_XS000000&AFID=google_pla_df&CPNG=PLA_Baby+Shopping&adgroup=SC_Baby&LID=700000001170770pgs&network=s&device=c&location=9013117&gclid=CIvs5JvuuNMCFc66wAodB94Ciw&gclsrc=aw.ds

starstar

braunskinny

Braun No-Touch Thermometer $29.00

Slow to read, many error messages

Contour isn’t comfortable against forehead

Questions of poor accuracy

https://www.walmart.com/ip/Braun-Forehead-Thermometer/26923480

Pretty good:

starstarstar

ear

Braun Thermoscan Thermometer -$54.00

Reliable temperatures

Works consistently

Set back: you have to purchase ear covers… the thermometer won’t work without them 😦 This is inconvenient for on-the-go temp reads

Short lifespan (have had to replace)

Many hospitals use this brand/type in the inpatient setting

http://www.toysrus.com/product/index.jsp?productId=103532256&gclid=CNrht8nxuNMCFc61wAodVWoFng&camp=PLAPPCG-_-PID24487684%3aBRUS&cagpspn=plab_24487684&eESource=CAPLA_DF%3a103532256%3aTRUS

Best I’ve found:

starstarstarstar

exergen

Exergen Temporal Thermometer – $39.00

Quick read

Seemingly accurate readings

Records previous temps

Initial set-up was finicky but has worked well since

Substantial feel

https://www.buybuybaby.com/store/product/exergen-temporal-scanner-thermometer/1046531544?skuId=46531544&mcid=PS_googlepla_nonbrand_furniture_&product_id=46531544&adpos=1o3&creative=88349044620&device=c&matchtype=&network=s&gclid=CLqs-KfyuNMCFQ6oaQodeJsAww

NOTE: Due to my son’s age (2-years) I did not review a sub-lingual or axillary thermometers, although these may be good options. Many health centers suggest rectal temps for accuracy- due to my son’s complex gastrointestinal condition, I choose not to take rectal temps and if I question accuracy of the thermometer- I ere on the side of caution and go immediately to my nearest emergency room.

Given my maximum 4-star rating, I don’t believe that there is a perfect thermometer on the market and therefore it is important to ere on the side of caution, watch symptoms and ALWAYS trust your GUT. (pun intended)

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Our SBS Story

Feeding DOES Matter

mater

Feeding disorders affect so many across the medically complex community, this includes those with primary GI disorders (i.e. SBS) and secondary disroders (i.e. CHD). Often times when medical complexities exist, feeding/swallowing need to be medically monitored/supervised and supplemental feeding methods  need to be used. The progression of eating is a learned process- that in its natural course comes in succession with the start of breast/bottle feeding. Not all children are able to start with this ‘texbook’ first step and feeding intervention may be necessary. If feeding intervention is used- in any form (g-tube, ng tube, gj tube, TPN…) then it is important to follow-up to assure that the most possible progress can be made for feeding and swallowing in the most ‘natural way (i.e. orally) as medically permitted- this may mean engaging an occupational (OT) or speech-language pathologist (SLP) to help with the progression of these skills.

Something important to note is that not all OTs and SLPs are trained in feeding therapy- so I encourage the interview of agencies and therapists to learn what (if any) experience they may have in feeding. If a therapist does not have the appropriate skills and knowledge to address feeding issues- more harm than good may be had and the results of this can be long-lasting. In order to learn more about feeding therapy,  some great resources to consult are listed below. Remember early intervention is key for optimal outcomes!!!

http://www.asha.org/

https://www.feedingmatters.org/

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Our SBS Story

Our Recent Health Scare

Hi friends-

I’ll be the first to say that I’m not a fan of the elusive post. I like to share our story and be open regarding our successes and challenges so that others can understand our crazy (wonderful) life or for others in similar circumstances to feel connected through our experiences. BUT there is an exception- that is when news hits that’s hugely unsettling and we don’t have answers… it’s the hardest for us- we want support but we don’t want to pull our world onto the roller-coaster of ups and downs- because we have quite a few, because it’s unnecessary drama and because it’s too tiring to share all of the updates when we are just trying to breathe and get through the moments while they pass until we find answers- and of course so we can focus on #1, Camden.

I needed the support- to know that others were sending good thoughts our way and to have visual affirmation that Camden has a team much bigger than his immediate circle surrounding him, so I shared that we’ve needed some extra love these past few weeks (thank you!) it’s been challenging.

We’ve had 6 weeks of ‘normal’ childhood illnesses (corona virus, flu, rota virus) that knocked Camden down pretty hard. SBS reducing the strength of his immune system considerably (did you know that 85% of your immune system lies in your gut? Without a majority of the intestines…. You understand). So we have spent a good amount of the time in the hospital fighting to keep Camden healthy and hydrated. With dehydration comes taxation on the kidneys which we’ve learned is reversible in Camden’s case- as long as we address it in a timely way. This is good. BUT because we have has so many illnesses, we did an ultrasound on Camden’s kidney’s to make sure that they were healthy. His kidneys looked great (WIN!) but they found an incidentaloma.

A WHAT?

An incidentaloma is a mass that is found through imaging (by accident) while looking for something else. So while we were expecting feedback from the images regarding Camden’s kidney’s, we weren’t expecting news that they found a ‘mass’ on Camden’s adrenal gland. Again… what the what? Come on! I immediately fell apart and we were bombarded with words like cancer, neuroblasoma, and visited by oncology. We came in for diarrhea NOT this. BIG BLOW. We sent away urine to test for hormones to see of the ‘mass’ was active- if so it would have cued a more aggressive investigation into what we were dealing with. We held our breath for 3 unbearable days waiting- I was a mess- and the results were ‘normal.’ Phew… right? No- there still wasn’t a promise that the mass was benign. We were still being followed by oncology and I couldn’t let that be enough. We were told in one month there would be another scan to check for growth…. ONE MONTH are you kidding? One month of forcing smiles, asking a million questions and praying every second of every minute of every day… not do-able for me. So we decided that we needed a more proactive approach to this and travelled last minute to Boston for a more thorough work-up. I haven’t felt so out of control- so scared and so vulnerable since Camden’s volvulus. This mama’s fight came back in full force. Thank goodness for Vanderbilt for identifying the mass and thank goodness for Boston for wrapping their arms around us- one of the many advantages of having connections and an established team at the #1 children’s hospital in the country.

We met with our team in Boston who were AMAZING and took Camden’s health into their own hands- they loved, cared and calmed us- it was the right move- it’s what we needed to feel secure and settled. We were prepared for surgery and everything else that came along with it- as well as another looong hospital stay. However, they did more imaging, a full workup with the oncology board determined that this finding was a splenule- an accessory spleen which is migrated tissue and that we can put our minds to rest (easier said than done) and there are no concerns for malignancy but that we’ll monitor the mass yearly just to keep a keen eye on things. Do you just let your hair down after this? SUCH a huge jolt.

6 weeks of illness followed by this scare has done us in- we’re exhausted in every possible way (for perspective, the previous post with me and Camden in the wagon was after we received the news… weathered and barely holding on)- BUT we are grateful and we’ll get our stride back, our perspective is in check and we are moving forward with a happy healthy (for his baseline) toddler- we could not ask for more.

This is a reminder that every.day. there are families in waiting, waiting for news, waiting for answers and sustaining- and that’s the most challenging way to spend your moments- the amount of Faith and emotional strength that’s required in those moments is indescribable- and there are families that are moving forward with the diagnosis (as we did and are doing with SBS)- and the fight continues- some win. some lose. It’s so hard to accept that these unbearable challenges are everywhere in life, isn’t it? We aren’t the first family to be up against more than one challenging diagnosis, life event, etc… It seems like recently there have been so many. Unfortunately- sometimes, it’s not just one and done- one issue doesn’t make you immune to others. So to everyone reading this- thank you for your thoughts and prayers (juju and vibes), for those going through challenges, I’m wishing you well and you’re certainly not alone, keep the good Faith. To those on the sidelines-love one another and remember- it’s small acts of kindness that change the world. The biggest thing that you can do is let others know that you care…care to connect. People TRULY are fighting big battles out there that you may know nothing about. You only ever see part of the story-including ours.

There is one thing for certain- our ups and downs have given us a beautiful perspective on life and I’m grateful that we don’t take a single moment for granted. Life’s short- choose happiness.

Love,

Meagan

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