The tapestry of the life of a medically complex family

Archive for November, 2011


Remember when you were 6 months into your first career? Did you feel you knew everything you could ever learn about your chosen field? Did you vocally attack people with significantly MORE experience than you- over stupid stuff like an oxygen tank not being fully closed ONE time you checked it?? This is the stuff I am dealing with with the newset nurse to join our homecare team.

A plethora of examples could be shared- like the above verbal “reprimand” of another nurse– the shift before she opened the oxygen tank herself, but forgot to attach it to my son’s trach, or TURN THE LITER FLOW ON! And when I discovered the error? A defensive: “Oh. I opened the tank.” How exactly does that meet my child’s needs?

This morning as I began to tell her about my experience last weekend with a significant heartrate drop, paired with oxygen saturation drop, she immediately went into “school marm” voice and told me I should “try repositioning him. It’s always worked for me so he has never dropped like that.” *pushed jaw closed with hand* before I replied that I was not ASKING for “help” about a situation, I was letting her KNOW what I experienced/observed. And to further clarify, I let her know that I am actually quite skilled in the care of my own children and she need not correct me when I am attempting to give her information about significant health events for my children.

I appreciate her feeling confident enough to help with my kids, but I am now leaning toward being put off by her over-confidence and inflated esteem. She has been here WEEKS and has no trach experience other than my children- frankly, her only other nursing experience is with a child with a GTube only- and her in-school clinicals. I am not sure I am going to be able to tolerate more from her. Home nursing is a blessing AND a curse. Some days more accursed than others. *SIGH*

Happy Thanksgiving 2011


Thanksgiving Baking

This afternoon’s Specific Carbohydrate baking endeavor is Pumpkin Muffins made with coconut flour. Our house smells AMAZING! Cannot wait to frost them [farmer-cheese, honey & vanilla]. Thank you, Comfy Belly chef!

Here are the bakers!

Selective Memory

Last night, the reason I fight so hard for overnight nursing returned to the spotlight. Tav vomited while laying on his back, telling me he was fine. The liquid ran across his chin and down over the trach mask into his trach. I got up and suctioned right away and made sure he was re-positioned on his side. So far he seems to have the heightened level of congestion we have had on and off for weeks- but nothing more. Thankfully he has not had a fever nor other symptoms that would put us on the road to the ER.

The trachs are so much part of our everyday that I no longer feel the fear of their openness to the lungs. The oximeters alarm so infrequently now that Tav is on continuous oxygen at baseline, the panic of an alarm has all but been forgotten. Until last night when oxygen & heart rate dips coordinated themselves. When I found his pulse & the timer to count, and aroused him to pull his heart rate out of the 30s & 40s. Fortunately, after being awakened and getting a neb to clear more thick secretions from his airway, Tav settled back to his usual overnight sats and heart rate. Hoping there is no repeat performance tonight- but at least there’s a nurse.

Think again. Nurse called out. HOPING for no more heartrate/ oxygen sat drop pairings. Chant with me??

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.

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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