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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Our SBS Story

A wagon is love ❤

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Our SBS Story

Info Overload Update

There is so much to catch up on… phew- it’s been tough for me to muster up the time (and energy) to write a recap.

right before our last trip to Boston… my Grandpa, our family’s rock passed away at 97 and my dad went to John’s Hopkins for major pancreatic surgery. The timing was crazy but my in-laws and I traveled together to Boston for Camden’s appointment and that visit (as I shared in a previous post) left us with exciting news- trialing no use of the broviac! I was excited (but guarded- which is my new normal as an SBS mom). While at clinic, Camden was battling diarrhea from the use of amoxicillin for a double ear infection…. poor guy. Camden isn’t often sick- we keep him on the sunny side of health (or try to) but we started pre-school 1 day a week and we were quickly introduced to the back and forth exchange of germs in toddlers and it hit us hard… SO- weaning from IV fluids AND some vomiting and diarrhea was the perfect storm and we found ourselves back in the hospital with what we thought was a virus… and ended up being a kidney injury and it totally knocked us down, we weren’t expecting THAT. The crazy thing is that Camden’s labs showed that he was perfectly hydrated (we’ve been all over hydrating him- knowing very well that without the IV we needed to do double… scratch that triple duty with keeping up with hydration)- so I don’t know when/how/or where but at some point between our trip to Boston and our (1-week later) admission to the ER his kidneys took a hit- but were on their way to recovery. We stayed in the hospital for 4 days to make sure that the kidneys were in fact improving in function and this set-back was reversible- it was- it is- and we are back at it. Camden is feeling better and we are hopeful for forward motion. We lost a pound through this setback which was heartbreaking for me- we work really really…. reeeeeallly hard for a pound. The optimist in me knows that he’ll gain that weight back and then some and this loss is only because of the illness and not an issue of absorption.

This setback is a reminder that:

With or without a broviac we are up against challenges with SBS

Our future includes fighting against dehydration and malnutrition and these things can have a real and very scary impact on Camden’s body

SBS isn’t cured- it evolves

So as we move forward and continue along with the trial wean (with some IV bolus hydration to give the kidneys some extra love) we will stay strong and continue to fight with the same fervor and love like hell… because that’s what we do! We are Camden Strong! XO Meags

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Our SBS Story

Squeasy Snacker!

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