Our SBS Story, Short Gut Support

Line Infection: Expect the Unexpected

…and you’ll always be prepared.

Well, our trip to Nashville didn’t go quite as we had planned. We took a road trip to Nashville for a family wedding- it was a wonderful weekend. We made it to the wedding and 2 hours after Camden’s connection that evening, he woke up screaming in pain-followed immediately by projectile vomiting and a temperature of 100.4. This meant we needed to get to the hospital ASAP. We called an ambulance and Camden vomited two more times in transit to the hospital and turned blue after each vomit. It was terrifying. I knew what to expect and I knew that steps to take when Camden had a suspected line infection, but I don’t know that as a mom you are ever prepared to see your child in such a compromised state- add in the mom guilt and helplessness and it’s the perfect storm for a chaotic and high stress experience. Thank goodness that we were prepared, you never want an unexpected circumstance like this to happen but you HAVE to be prepared. We knew what hospital we were heading to, were constantly watching for infection signs and carried a thermometer with us at all times. The key to addressing line infections is to act FAST- thank goodness we did- Camden had early sepsis. He was in rough shape and it took him some time to stabilize him. We gave him his cocktail of heavy hitting antibiotics (in our case it’s Vancomycin and Zocyn- I have no idea if those are spelled correctly), took chest and abdominal x-rays and we waited for signs that the meds were working. Thank goodness that the team at Children’s Hospital at Vanderbilt was wonderful. They worked flawlessly with our team in Boston- that’s all that we can ask for, a team that listens. It was about two days before we noticed a turn-around for Camden- two.long.days. Blood cultures were collected every day until we were able to obtain two cultures where bacteria was no longer growing in the blood- this is an indicator that the infection is being hit with the antibiotics. The next step was to identify exactly what bacteria we were dealing with so that we could target it more specifically with the most appropriate antibiotic. Still with negative cultures, it was and still is important to continue to watch for breakthrough signs of infection. We were discharged almost a week later on 2 weeks of IV antibiotics. Home never feels as good as it does right when you get out of the hospital.

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So what should you look for when surveying your child’s symptoms for infection? The list is large but here are SOME of the key indicators:

Inconsolability

Vomiting

Increased Stool Output

Fever of 100.4 or greater

Lethargy

Just Seeming “Off”

If one or more of these symptoms are present- Call an ambulance immediately (or get yourself to the hospital if you can safely do so- my preference is an ambulance), if your child is vomiting turn him/her to their side, prepare to do CPR if your child stops breathing, call your team so that they are aware and they can notify the ER to expect you, bring signed doctors orders for how to treat in care of suspected infection

Once you’re in the hospital, it’s a waiting game, lots of loving and praying and juju-ing (this is a verb that I’ve coined), get yourself in the right state of mind to help call the shots and make sure that you are in the best shape to care for your child (and so that you can make sure that the team is making the most appropriate calls for treatment). We find that line care is inconsistent when we are inpatient-so as soon as we are admitted, we kindly and calmly outline our expectations for line care-scrubbing the cap for 30 seconds, letting it dry completely before accessing the line (and doing this before EACH access), keeping all supplies on a sterile field, have the staff wear gloves and a mask. If the team has line protocols above and beyond this, we welcome it… but we watch-because you’d be surprised how 30 seconds turns to 5 when no one is watching. We also follow-up and check TPN when it arrives to make sure that the right contents have been mixed and I check all medications that are administered (in fact I give many of them myself). I try to do as much as possible when inpatient to make sure that Camden’s care stays consistent. It can be stressful, but keeping a close eye can help alleviate insecurities. With this being said, I think that it is important to be kind and respectful of the different ways people have been trained, it’s possible to collaborate and work together to make for a positive ‘team’ environment. Using “we” statements, instead of “you” statements helps to eliminate defensiveness and furthers a partnership between yourself and the medical team. Finally, don’t be afraid to ask questions and suggest ideas, after all you are your child’s best advocate.

As for taking care of your personal health in the hospital… it can be tough. I get worn out very quickly. A positive attitude and diligence for Camden’s care takes about all of my energy reserve. The space is small and often cramped, beds are uncomfortable (Vanderbilt did have an amazing room layout-I was really impressed-sooooo functional-kudos!), and you just KNOW that there are germs lurking, everywhere. So you feel a little bit like you are in a bubble, not to mention people are in and out of the room at least every 3 hours around the clock. The food? Well, our options at Vanderbilt were Taco Bell, Pizza Hut, Subway and Ben and Jerry’s-so eating healthy is typically out of the question… I haven’t eaten that much taco bell since college. My theory is that hospitals only offer unhealthy meal options to keep themselves in business (:p … but seriously). Showers… well-they are a mixed bag-sometimes it’s a tiny stand up shower that floods the entire floor, in Nashville, it was an actual tub shower!! I felt like I was at the Four Seasons! Only… the towels felt like paper towels…and honestly they were about the same size. I’m 5’1″ and it wasn’t even close to getting the job done. Finally, keeping a sick but still lively toddler entertained in the confines of a hospital crib is nearly impossible… and while they are hooked up to a huge bundle of IV’s…. good luck with keeping the lines untangled. Options for Camden were in the crib or on my lap in a lazy boy chair- he wasn’t a fan of either- but we had to make due. He wanted to move around and scoot (he refuses to crawl) but the floors are SO questionable, I just can’t allow it. We do bring his bouncy seat and that helps (baby born bouncer has been a lifesaver for us). Otherwise we just sustain ourselves until we hear the D word- Discharge and then we JAIL BREAK- you’ve never seen a family run so fast out of the hospital- after all that’s what we’d been fighting for all week- HEALTH, HOME and FREEDOM. Every.single.time we are grateful and renewed at how fortunate that we have the opportunity to fight alongside Camden and we continue to be in awe of his strength and resilience. Man, I love that little guy ❤ Our list of adventures keeps growing and we are continuing to do all that we can to keep Camden safe and thriving. #hospitalmom #shortgut

 

 

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