The tapestry of the life of a medically complex family

Archive for June, 2012

Blueberry

For some reason, today’s weather thought it’d be nice enough to allow a breeze, maybe even keep itself 70 or so. As I watched the cloud cover, it seemed complete, but not “dark & threatening”. The planets aligned & we also had no doctor appointments & PT was done by 10am. This, my friends, was a day of opportunity!

As soon as the PT left, I gave Trachboy the rest of his breakfast & ran thru the shower. I packed oxygen tanks, suction & prepped a cooling vest just in case Trachboy began to fade. I ran a 5mL saline neb to clear any junk from lungs & airways, dressed the 3some and headed for the back door.

We tried out our local farm & had hoped to pick some of the last strawberries but found that their remaining plants were a long walk & near deplete- thank goodness for the employee who let me know they might not be worth the walk! She recommended we try blueberry picking instead and gave us a wagon for Trachboy & his equipment. Trachboy rode in style while the girls “helped” me to pull him up the sloping hill. We arrived without injury or excess fatigue & got right to work.

We managed to get about 3lbs to purchase and I’d bank the kids ate at least half that much in the field. Trachboy was fatigued but happy to kneel with his oxygen tank & eat purple berries from the bushes. Youngest certainly ate at least twice what she kept. Trachgirl was the champion collector moving bush to bush, occasionally escaping our row, as she foraged for blueberries. All in all, it was a memorable success and we are all so glad the weather cooperated.

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Spring

Do you remember when ‘spring’ existed? The days when it was warm enough for a t-shirt by day and cool enough for a sweatshirt at night? I remember it and boy do I miss it.

I am so thankful for the mild winter we had but wish for days when there is no bucket loader removing cash from my account via gas for heating or electric for cooling. Fall days seem to be best for the kids as far as temperatures go. I love the crisp air, the breezes that are more common.

But here we are in spring- a couple months of BLISTERING temperatures away from relief & outdoor play. Today looks like the one reasonable morning before the heat returns so we will rush meds to get outside. Hoping for energy enough for Trachboy so he can truly enjoy this. Then back to cooling vests and AC we will go.

Enjoy your day.

Bronchoscopy Trifecta

Monday was a busy day that began very early and ended sometime Tuesday. Thankfully our terrific overnight nurse came in on Sunday overnight to be sure the twins got all their meds. He was also able to help kid wrangle during pre-op and recovery so that each of the twins had a familiar adult, while Nana oversaw my youngest. It was a smooth process overall, thanks to skilled and responsive hospital staff and our surgeon. Much of the news was good, some changes with the twins- both have larger trachs- and my youngest has an airway & larynx that now “look great”. My kids are easily amused at the hospital with videos and the food was good so they enjoyed their 36hours there for the most part. I am very thankful my kids are so easy-going with the procedures necessary to assess their medical needs.

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The Beach in 2 Speeds

Remember records? There were LPs and speeds of 78 – 45 – 33 1/3 … Find me a kid today who even knows those speeds have to do with RPMs – unlikely.

So many things in childhood come with their own speeds. Yesterday I went to the beach with my youngest and I was reminded that the beach in childhood has only 2 speeds: Run and Jump. She ran slowly through the loose sand, pumping her arms madly to help herself move forward. When she transitioned to the firm wet sand, the spring in her legs was transferred to the speed of jump- leaping up and down while running forward to the surf.
The hour we spent splashing & leaping at the water’s edge is better than any time spent talking about health concerns & ways to heal. To live these moments, ears buffeted by the sounds of surf & gulls, refreshes our wounded spirits to keep on another day.

Each day I love the memories crafted at the speed of childhood…

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What Dr. Mom Ordered

After a stressful week of chasing down records for a medical appointment at a new medical center, THIS is JUST what the Doctor Mom ordered:

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As you were. We are watching our groundhog baby friend explore our yard. Got to go.

Tremors

Today while making the kids breakfast I noticed them in my fingers. When there’s lots of stress and less sleep- there’s more coffee, less food. My body responds by less steady hands. As I await the night nurse so I can get some sleep, I still haven’t figured out how I am going to get some medical info to the doc before our appointment on Friday. Tomorrow’s nurse called off her shift already so I won’t have any help at all… To say I’m thankful it’s just my fingers that tremor is an understatement. These tremors don’t scare me because I know the stress will stabilize, I can drink less coffee [but I won’t…] and I took the time to eat lunch today so tomorrow should be better.

The tremors that do scare me were here last night. As Trachboy was drifting off to sleep, his body did it’s gentle, repeated twitching that I haven’t seen in a while. He was really tired but it has been a really long time since I remember these movements of his trunk and the flitting around of his eyes. In the point of near sleep, not focusing, flicking back and forth while his body moves along. His first few years, these movements were part of his nightly ritual but I don’t remember the eyes taking part. Eerie.   Hoping this is not something we will see again but it is now on the list of questions for the doctor on Friday.

A Long & Winding Month

June is here & has already begun to close in as one of the busiest months for getting things done. At the end of the week, we go to a new hospital and the Mitochondrial Disease/Metabolism Clinic for one kid- although they want me to bring along records for my youngest. Last month, about 3 weeks ago, a request for “complete medical records” was made. Today I received records for the ones to be brought along- not one pulmonology note, not one neurology not, not one orthopedist note, none from cardiology… Complete? Not exactly. So tomorrow will be spent calling the medical records department and following up on this & the other request- while I do not have a nurse along for the ride.

The appointment Friday will be tough. I am trying to write a summary list of strengths and concerns. I still feel pretty ambivalent about whether this is truly what we are seeing. At least it is also metabolism- cuz this kid has got some SERIOUS ability to burn calories! Maybe they will have a suggestion that outweighs the GTube recommendation of the GI & Cardiology- maybe they won’t but it’s worth an ask.

The next scheduled appointment is the day when all 3 kids are scheduled to go under anesthesia and have their airways looked at. June 18th will be a crazy-busy day and I have yet to line up hands to hold & rock kiddos pre- & post-op. The appointment may be bound with an in-patient stay overnight- making this a crazy 2-day extravaganza. At least it is at a hospital I 100% trust with the care of my kids so it won’t be as stressful being in 2 rooms if all 3 need to stay.

Closing out the month will be an ACTUAL pulmonary appointment. We have been bundling these with the Complex Care appointments and not really getting much time sometimes. Our pulmo has a great reputation, is easy to talk to and has significant creative ideas on how to treat my kids- but is SO busy taking care of everyone complex in our medical mecca that he is hard to get together with outside his clinic. I will be glad when the month is over and am hopeful the information we get or changes we make will help my kids thrive throughout the rest of summer- & beyond.