#Medically Complex

Well it happened. Much sooner than we expected. Yesterday the pulmonologist confirmed it was likely disease progression. I no longer have the strength to take big breaths which in turn caused atelectasis. I am needing bipap all day. (Though I am not wearing it always when I should because it’s uncomfortable. With now needing it most of the day instead of just at night, a trach was mentioned. You can’t eat or drink with a mask on due to aspiration risk. It would also feel up my face to talk, and not develop pressure sores. I’m hoping to avoid a trach as long as possible and we have a few ideas to try. This happened so fast. 2 months go I was admitted for respiratory failure (which I’m still in) But the bipap at night was doing more for me and I was able to get by in the day with just occasional mout piece ventilation. #disability #wheelchair #fyp #medicallycomplex #inclusion

We’ve never regretted treating the hospital like a second home and the people there like friends. ❤️ Violet picks up our vibes as we say hi to security and receptionists like old friends, relax in the ER when we see familiar faces, stay after appointments to grab lunch in the cafeteria. Her worst days have been in this building but she still feels safe and loved and it shows the moment we walk through the door. #joubertsyndrome #reallifeparenting #medicallycomplex #momlife

If you are the parent of a child with complex medical needs, you know… You know the sleepless nights listening for every breath. You know the exhaustion that lives in your bones. You know the calls, the emails, the battles for care. You know the losses. You know the parts of yourself you had to leave behind. And still — you rise. Every day. For the smile, the giggle, the “I love you.” To the medically complex parents who keep going… You are the quiet heroes of a story that takes everything, and gives love back. ❤️ 🌈 If you’re with us — drop a rainbow. #medicallycomplex #specialneedsmom #specialneedsparenting #medicalmom #medicalmama #specialneedsfamily #rarediseaseawareness #chronicillnesskids #oxygenbaby #gtubebaby #medicaljourney #caregiverlife #pediatrichealth #nehi #nehiwarrior #specialneedscommunity #momsofinstagram #parentsupport #parentingthroughit #raisingremi

This was a milestone I was hoping to avoid, a least for a while longer. Mackenzie’s first ambulance ride, her first interaction with paramedics. We had phenomenal care from EMS with first responders who are committed to learning more about Mackenzie’s EB in case she needs further care in the future. But I hate that she needed this today. EB is wearing on my heart. #medicalmom #ems #emergency #fyp #raredisease #epidermolysisbullosa #911 #babygram #medicallycomplex #parenting #woundcare #tiredlikeamother #heavyheart

What is the point of taking such meticulous care of a medically complex child if you never let them live? And I don’t mean survive. I mean really live. The appointments, therapies, and medical equipment matter. I mean they keep the body functioning. But a life cannot be built on medical care alone. Joy, experiences, and being out in the world are not secondary to complex care. They are what give it meaning. Letting medically complex and disabled children live fully laugh, play, be seen is not reckless or optional. In many ways, it’s the most important part, because it’s what makes all the effort, vigilance, and love worth it ♥️ #specialneedsfamily #medicallycomplex #neurodivergent #motherhood #autism

This trend was made for Sam 🥰😁 he is 13 months old, 38 lbs 10oz, and 35 inches tall. He wears 5T clothes❤️ check out my BWS playlist for more info on his rare genetic condition! #medicallycomplex #geneticcondition #medicalmom #beckwithwiedemannsyndrome #bws #overgrowthsyndrome #baby

I think I’m going on 2 months straight with at least 1 kids being sick in the house. The babies and I got it last and it’s by far the worst. Especially with Shiloh being high risk for everything to escalade to hospital status, I am on high alert day and night 👀 Watching these two babies do life already together feels like the greatest gift. They are fighting battles side by side and holding hands through it and it melts my heart. I’m praying for all you mamas out there holding down the house through this sick season! It ain’t for the weak 💪🏽 I see you! Soon the day will come and everyone will be all better and you’ll feel like a million bucks 🙏🏼 #momlifeunfiltered #childrenwithdisabilities #singlemom #medicallycomplex #christianmoms

When we do have to say goodbye after our visit ends we do so in a magical way that sticks with the family and us long after the visit is over 🩵👑✨#theprincessprogram #hospice #medicallycomplex #makingmemories #makingadifference

I was recommended brain surgery as a last ditch effort to treat what they thought was generalized dystonia. It turns out I should have said no. I woke up after the surgery and was unable to speak. I started using sign language, but the nurses didn’t understand. My sister knew some and helped translate as my parents didn’t know much at all. I wasn’t very legible in my speech for a couple weeks afterwards. I don’t remember much from the first few weeks of a 2 month hospital stay. I was hanging on, but slept through most of the days. But I also immediately lost my ability to walk. I had suffered a traumatic brain injury. The next chapter was inpatient rehab. I worked on skills like walking, eating, speech, transfers, and independence. I started being able to walk short distances and using a wheelchair for most of them. Then came the home chapter. After just as couple months, I once again completely lost my ability to walk. This time, permanently. Progression of my disease. The surgery also proved to be unsuccessful. It turns out I didn’t just have progressive dystonia. It was something much more severe and progressive. It would quickly take a lot of abilities. I am now completely wheelchair bound. #disability #wheelchair #fyp #medicallycomplex #inclusion #chronicillness #dystonia #braininjury #trendingreels #neurodegenerative

over the next few days we say goodbye to pally’s earthly body and *officially* gather to celebrate her beautiful life. this was about 15 min before she took her last breath. i love you, pally. mama misses you so much. ❤️‍🩹 #grief #griefjourney #motherhoodintheraw #honestmotherhood #bereavedmother #childloss #medicallycomplex #catholicmom #catholic

POV :Chaos , meds , repeat #specialneedsmom #specialneedsfamily #specialneedsparenting #medicallycomplexkids #explore

At this moment, I knew they were ready to put her out of the hospital. And yes she ripped the leads off 😮‍💨 (She crashed right after this video) #reels #specialneeds #medicallycomplex #caregiver