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Thank you very much for this opportunity given to me by you to express myself. I am really honored in getting to know you. Let me tell you a little ab

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Community Voices

Somewhere in Between

I started something I hope will grow into amazing. Visit somewhereinbetweenco.com!!! This is a project I am passionate about and I want to grow into something wonderful!!! Parents of special needs and medically complex kids are stuck. They're stuck between lawmakers and insurance companies and medical providers;they're stuck between work/life balance. Somewhere In Between is my blog where I share my journey with these in between spaces and I hope to grow a community that is empowered to make change in the world, even if it's small #MedicallyComplexChild #ChildrenWithSpecialNeeds #InclusionAndSpecialNeeds
#worklifebalance
#Gtube

Community Voices
Community Voices

Nursing and in home care during COVID-19

<p>Nursing and in home care during <a href="https://themighty.com/topic/corona-virus-covid-19/?label=COVID-19" class="tm-embed-link  tm-autolink health-map" data-id="5e678dcff3e6f44cb2d93fd4" data-name="COVID-19" title="COVID-19" target="_blank">COVID-19</a></p>
2 people are talking about this
Community Voices

Struggling with #abdominalpain

<p>Struggling with <a class="tm-topic-link ugc-topic" title="abdominalpain" href="/topic/abdominalpain/" data-id="5c4674c8a4c8ff00c9a38179" data-name="abdominalpain" aria-label="hashtag abdominalpain">#abdominalpain</a> </p>
17 people are talking about this
Community Voices

Does anyone know what these are for?

<p>Does anyone know what these are for?</p>
2 people are talking about this
Community Voices
Community Voices

Anyone have J tube feeds back up into your stomach? What do you do about it?

I've had a J tube for going on 7 years and have had intermittent trouble in the past with tube feed backing up into my stomach and then sits there until I vomit. After sepsis in November and an ischemic bowel injury has become a major issue. Constant pain, vomiting, dry heaving all feeding into each other and i was getting practically no calories and was only staying hydrated because of my iv fluids. Well, we tried and tried but nothing was significantly improving so in February started TPN, which is almost a death sentence for me because of my history with sepsis... At that point though there were tough conversations about dying fast from sepsis or a slow death from malnutrition and dehydration... So did end up starting TPN but my GI Dr also placed a straight (separate) G tube so that i could vent instead of vomiting all the time. Making a world of difference as it broke the cycle of vomiting and dry heaves, while not gone, much less frequent. So tried to reintroduce tube feed and was supposed to go up on tube feeds and slowly come down off TPN. Well... Sepsis... Again... After that cleared plan was to forge ahead as i had finally got to a whole 10 mls/hr. Was home only 10 days before sepsis struck AGAIN. (Same bacteria so think the antibiotics didn't clear the previous infection completely.) Came with a vengeance and landed me in ICU again on pressors AGAIN... As if that wasn't enough developed flash pneumonia and went from a little dry cough to intubated in under 40 hours. Really brought me to the brink this time and ICU DR said if I continue with a central line it will kill me. Thus began the all out battle to get my gut to accept tube feeds. Was able to get tube feeds up to around 1,000 calories but due to covid was rushed out of the hospital before seeing if i could stay hydrated via j tube, as they pulled the central line. That has been the biggest piece of my struggle right now. Within 2 weeks started doing peripheral IVs for hydration as tube feed was consistently backing up and leaving me with way more output then intake. Also driving that was lack of urine and concern i don't end up with kidney damage. Well, am getting hydration via sub q now (long story) but to get adequate total fluid intake had to back down the tube feeds so now only getting around 700 calories a day, obviously not sufficient long term. Driving factor still being that when i increase the rate it flows backward. Last 2ish weeks been spiking fevers and Dr thinks it's a gut infection so doing rosefen shots to hopefully clear that up and maybe improve the inflammation. Hoping maybe once that's healed I'll tolerate the feeds better. Sorry this is so long but wanted to share some background to the problem. Does anyone have experience with this type of malfunction? What did you do about it?
If you made it through all that, thanks for reading! Look forward to hearing back! Be Well! #Gastroparesis #TubeFeeding #Dysautonomia #Gtube #abdominalpain #Sepsis

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Community Voices

#postpartum is rough in general; today was a struggle


#MentalHealth
#Gtube

#PostpartumDepression

I just got the 3 year old to bed and hubby put the 8 month old to bed. as I pump, I am so overwhelmed and emotionally exhausted I just want to crawl under a rock. the 3 year old cried for about 30 minutes because he lost his story time for being defiant and not following directions. I feel like things between my husband and I are tense. We are probably both tired...I know I am. when I am tired, I get so emotionally overwhelmed it's like I cant but coherent thoughts together and when my toddler is repeating himself over and over and over I just want to explode. most nights, I'd rather be cuddling with my 8 month old. The toddler wont let Dad do anything most nights. then after both kids go to bed, his band wants attention and I just dont have anything left to give. I spend 100% of my day taking care of others (my job entails a lot of complex problem solving and helping people through injury). I just want to come home to quiet and spend a nice evening meditating.
I'm not sure what I'm looking for in this post... nothing I think. I needed a few minutes to dump all these thoughts out of my head. thanks for reading my rambling.

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Community Voices

Medical Cares Will Not Stop Us From Going Out in Public

<p>Medical Cares Will Not Stop Us From Going Out in Public</p>
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