Hospital Life, Number 2

Our SBS Story: First Admission Home

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(4:00am ambulance ride- and he still smiles!)

There is no better feeling than bringing your (SBS) baby home for the first time. So many of us literally live in the hospital for months fighting for our little warriors, the freedom of home is exhilarating. However, with that excitement comes a great deal of unknowns and an ever present persistent worry (like anyone bringing home their child for the first time… except with an extra lemon twist of sepsis risk). With a central line, our son’s protocol for an ER visit and subsequent (mandatory) 48 hour hospital admission is 100.4 degrees. But here’s the tricky part, a fever isn’t always the leading sign of sepsis, vomiting, diahrea, listlessness, fussiness, chills, change in eating habits, change in urine output, change in stool, etc. all can be marked as signs and symptoms- this is a baby right?! These are all normal baby things that happen… Only now there is a a compounded concern.. Sepsis.

All week Camden has been vomiting a little bit in the morning, nothing hugely concerning (short gut kids ‘do this.’) Throughout the week his stool became foul smelling, he would cough in his sleep, occasionally and his vomiting became more and more persistent. We went to the ER for an abdominal X-ray and all looked well, we went to the pediatrician and all looked well- and still last night we woke up to vomiting and a 101.7 temp. We are currently living an hour from the hospital, so due to the length of the drive and the high grade of his temperature, I opted for an ambulance ride. So a seamless ER admission, several antibiotics, and D10 fluids later we start the clock for our 48 hour rule out. Labs were drawn when we arrived in the ER and our son will be managed while the lab closely monitors his blood for any bacteria growth (sepsis). So we wait. It’s an adjustment not being in Boston where familiar faces comforted us. Instead we have new people to meet and a new windowsill to try. Here we wait, pray and hope. We always remain positive! (But remember for any family who loves and cares for someone who is chronically ill- its impossible to remove the underlying stressors- we just learn to manage them in as healthy a way as possible (see Stress Series). We’ll mark this in the book as another first, our first admission home and we’ll work as hard as we always do to try to make it our last❤️

Love from our windowsill,

Mommy with Guts

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