The tapestry of the life of a medically complex family

Archive for the ‘Preemie’ Category

A “Group” Activity

Today we rose early for a Saturday. We ran nebs early; we ran Vest CPT early; we finished breakfast at the time we typically BEGIN… I got a shower and took the time to straighten out the girls’ hairdos.

Clean & hair & dressed for the day

They looked GREAT!

 

Then we drove through Starbucks so Momma could get a coffee before driving the hour plus to our children’s hospital to join a music class run by our pulmonologist for ex-preemie NICU grads. We got there after the presentation & chat time [oops!] but in time to be seated before the music began.

At the start all 3 kids stared, unmoving, at the musician leading the group. They were older and more reserved than any other of the attendees- it’s been about 3 years since they have been in a group of children in a community setting. This particular setting is designed for kids to come when they are HEALTHY only, once a month. It is designed to be for kids younger than mine, but certainly my kids fit the group dynamics with their lack of experience in the setting. By the end, the girls were trying to sing a bit and playing musical instruments along with the singer. Tav even chose an instrument to hold while staring- for him, stellar participation.

My kids’ pulmonologist recommended we attend- and he is encouraging us to continue coming. He runs the group on a Saturday and my kids have spoken of little else since we got home. Looks like we may have to get started earlier so we arrive in time for his talk next month. I am so thankful to have caring and devoted doctors on my kids’ team who go above and beyond to address their needs as “whole children” who need special consideration when it comes to being in a group.

Category:

kids, Medicine, Memories, Preemie, Special Needs, Trach, Twins

Balancing Oxygen Use & FUN!

Yesterday I figured out a way to attach Tav’s oxygen tank to his balance bike in a way that still allowed him to ride and have fun. I moved my car up on the driveway and we had a great time as the kids rode in circles and tested out their balance bike skills. I can’t wait to head to a bike path again soon- now that the weather is finally cool enough for my kids. 🙂 We took some picture to share with you all. ENJOY!

[we need to get back out on the driveway… gotta do trachcare]

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Category:

Environmental Challenges, kids, Memories, Preemie, Trach, Twins

the Evolution of Saturday Morning

My oldest child is 18. I remember Saturday morning with him: a time of lounging together, sleeping in, Saturday morning cartoons… It was the morning we ate at the diner, got out to the park, met friends for hiking excursions…

Now Saturday “morning” typically begins as a continuation of Friday evening. Getting to bed before Tavish completes his first “barrel roll performance” is impractical. I typically stay awake and occupy myself with the computer or TV or laundry until just about 1a.m. before settling in to my first nap of the night. Overnight “morning” continues as I am startled awake by an oximeter alarm, or a breath that sounds off, or the crashing of knees into the metal siderails of the medical cribs. On & off, I steal sleep in 2-3 hour increments until true Saturday morning begins.

Gone are the Saturday morning snuggles, the invasion of my bed by young children to gently awaken me. Today’s Saturday mornings begin with a startle to awake and realizing that the morning neb treatments must begin or the feeding schedule will be so off we will miss an essential 200-300 calories for the day. Typically I shut off oximeters and then the mist compressors. Together the twins and I stretch our arms to the side, close our eyes, and mark the “moment of silence” before the mechanical deluge begins anew with nebulizer compressors running the first of 2 morning nebs. As the first neb runs, I get Keva from her room or the nearby cushion on the nights she “rooms in” in our “ward”. She gets to the bathroom as I try to make my coffee so I can complete all the rest of the morning tasks which keep my kids breathing well-enough to enjoy some of the day.

It has been quite an evolution from the morning of rest, of “refresh”, to the morning of “assess, neb, toilet, meds, nutrition, assess, repeat”.  The most difficult part of the transition? There no longer IS a “refresh”…

Category:

kids, Medicine, Nursing, Preemie, Special Needs, Trach, Twins

A Quiet Week

This week is a “quiet week” – 4 days no nursing & only 2 doctor appointments, 1 for each twin. O sure, the doctor appts we are going to are genetics (results) and an ECHO with cardiology follow-up, but it’s only 2 trips in- and one of them I will have a nurse.

Maybe its just that the next 46 hours are covered with nursing. Maybe it’s that place of denial where a parent needs to live to get through the stress of waiting for testing to see if your 5 year old is suffering from pulmonary hypertension… Maybe. But this is my quiet week.

Category:

kids, Medicine, Nursing, Preemie, Special Needs, Trach, Twins

Cool!

The evaporative cooling vests turned out to be amazing. “Activated” with some cool water, they kept Tav & Adrien cool enough to ride their balance bikes on the bike path for 20 minutes before resting- in 85 degree F heat. SO happy we have a tool to help with this. The fearsome 3some had a GREAT time.

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Category:

Environmental Challenges, kids, Medicine, Momma making, Preemie, Special Needs, Trach, Twins, Uncategorized

Curative Diet- Who Knew?

This week my twins’ ORL took a look inside their airways during a bronchoscopy. The pictures were remarkable in their differences from last year. Last year’s view of the airways included irregular raised bumps all over the inside of the airway- completely gone now. The upper regions of the lower airway now are smooth & pink-colored. No more red, raised inflammation is present anywhere high along the larynx. I have never seen this on any previous viewing.

It makes me wonder what the culprit has been in the past. What “poison” [to their system] was I feeding them for 4 years that has been removed on the “specific carbohydrate diet” we now follow? There are SO many things we have removed, SO many food changes we have made- what is the one that has helped clear the irritation in this airway region? WHY are there “no allergy” results on their allergy panels that have been run? CLEARLY there was something producing this irritated, red surface view of the past- and it is now gone.

Just one aspect of the multiple questions raised during our medical tour this week…

Category:

Feeding, Preemie, Trach, Twins