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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Our SBS Story

TPN Trial WEAN!(and a one for one TPN trade)

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We’re back from another trip to Boston for CAIR (Center for Advanced Intestinal Rehabilitation) clinic. We braved the nasty noreaster storm and came back with some exciting news! We are trialing NO broviac usage! Camden’s expected weight gain for these past 8 weeks was roughly 8g/day- he gained 23g/day and is now at the top end of the growth curve. The team had me conference in Eddie to deliver the great news (he was on a work trip and his awesome parents were in Boston with me helping out- thank goodness for them)! Emotions are high- I cried. It has been two years of 110% commitment to Camden’s care- Boston every 6-8 weeks- and this opportunity to trial nonTPN/Hydration is not under appreciated. We are excited and nervous. The first night that I didn’t hook Camden up to his IV-felt so strange- I didn’t sleep a wink worrying and checking on him all night. He did great and I pray that this trend continues.

Camden came off TPN on Feb.9th… My dad went on TPN Feb 12th. There is so much irony in that. For those of you who don’t know- my dad is recovering from major pancreatic surgery to remove a mass that was found before Christmas. My mom is staying with him at the hospital out of state as he recovers. They called yesterday to tell us that due to limited bowel activity- TPN would be started. How is it that 2 years ago, we had NO idea what TPN was and within a week my dad AND my son have both been on it? The world works in mysterious ways (and my dad is now a TPN expert… he might know more than some of the nurses 😂…) He’s enjoying telling Camden’s story and asking the medical team if they’ve heard how great Thrive is (Camden’s infusion company)- love it.

So we’ve got one off and one on TPN- please pray, send good thoughts/vibes and juju for my dad’s full recovery from surgery and Camden’s continued successful wean.

It’s been a roller-coaster few days, weeks, months… years- what doesn’t kill you makes you stronger and these experiences have made us strong.as.hell! 😳💪 (thanks to our ‘crew’ for all of the support, you know who you are😘)

Meags

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Our SBS Story

Morning Clean-up

Camden gets 600ml Neocate Jr., meds, 150ml tube feed, and 600ml hydration overnight. That means very FULL diapers in the morning. Every morning g is a massive cleanup which includes washing all bedding, pjs (a full toilet rinse is often required), diaper change, sponge bath, and usually another diaper change. It takes and army- or at least a basha (my mom) to help get it all done. #thesbslife

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Our SBS Story

Clamping the Clave

Reminder: Clamping the clave on the thick part of the catheter can help to prevent line breaks! When we dress the line we keep all of the thin (and as much of the thick) part of the catheter under the dressing to keep any tension off of the thin catheter segment. The slightest pull on the thin segment can cause a break- I wish so badly that it was more resilient!!!

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Our SBS Story

This is how we roll, this is how we tube

Camden has had a pretty traditional weaning pattern- 100% TPN/Omegaven in the earliest days and we slowly advanced on enteral (g-tube) feeds of breast milk (starting at 2ml-every 3 hours). We gave him breast-milk until he was just over 1-year and then we needed to start adding calories so we switched over to a pre-digested formula (we use Neocate Jr.- but there are many products out there that serve a similar purpose).

Now, we slowly increase enteral feeds if Camden is showing signs of tolerance (no vomiting, stomach distention or diarrhea). We give him enteral feeds for 12 hours continuously overnight. We also offer Camden developmentally appropriate oral feeds (i.e. bottles, baby food, toddler snacks) as he advances through the stages of feeding development. Our goal is to have him be as oral as possible- so we offer a variety of tastes and textures. Until our recent wean off TPN Camden went through several stages of oral acceptance (LOVING baby food, not loving baby food, eating and pocketing foods in his cheeks, gagging on textures, loving textures). Recently, since we’ve weaned from TPN and moved to straight hydration he’s been hungrier and much more interested in food, he also loves to drink from a cup and straw. We make sure to offer him foods and drinks throughout the day to make sure that we are satisfying his urge to eat and drink (even if he’s not asking for it, when it’s offered he likes to eat!). We’ve made great progress with the increase of enteral feeds (with bumps along the way, illness, times of intolerance, etc.)… but when we really saw the difference in Camden’s weight gain is when we started offering Camden blended foods IN ADDITION to his enteral/oral feeds. I didn’t make a push to substitute our Neocate Jr. because we love it- Camden tolerates it well and it has done it’s job keeping Camden fed (nutritionally complete formula) and promoting his weight gain. So, I went rogue and started VERY small (5ml) tube feeds of organic baby food puree, twice a day (am/pm). As he tolerated this- we went up by 10ml each feed. He did a great job tolerating the bolus tube feeds- BUT baby food itself doesn’t have a lot of calories to help with weight gain- so in come the fats! I started added 1bsp of peanut butter to his morning feed and 1tbsp of canola oil to his afternoon feeds- to add protein and high value fats- this is when we really saw his weight skyrocket. The complement of Neocate Jr., table foods, and blended bolus feeds has been the perfect trifecta for us. Our team didn’t lead the decision to start bolus feeds- but they supported it once we started and we’ve all seen the benefits of weight gain and growth. I’ve even noticed Camden to have more energy. (and he’s still hungry despite the blended diet- SCORE!)

The tube feeding routine adds a lot to our everyday cares and takes a lot of time and planning- but it’s been worth it- it’s been a game changer for Camden and I’m glad that we went out on a limb to try it.

Currently we are at 56ml/hour continuous feeds overnight (Neocate Jr.)

150ml bolus feeds 2x/day

Camden gets three meals and snacks throughout the day.

600ml D-10 Hydration for 12 hours overnight

I hope that this is helpful to other GI families and insightful to people following along on our journey! If you have any questions about our routine, feel free to ask!

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