The tapestry of the life of a medically complex family

Archive for the ‘Twins’ Category

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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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.

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.

How it is Done

The number one question I get from others: “How do you do it?” If you want to know the specifics, you can read about one of the typical days here. But most people are really asking “How do you get ALL of it done? How do you keep going, day in & day out? Where do you get the strength to get up each morning and ‘have at it’?”

My standard short answer is: I just DO. And sometimes not very well… but when it’s a person who really cares, who may have the same things they need to do every day, who might be feeling like they cannot keep on “doing”, I try to give it more thought. Here’s how I think I get through each day:

I am aware of the “big picture” but I work to not get bogged down by the overwhelming list of things, start to “finish”, of every day. I try not to look at everything ahead all of the time- if I do it will quickly overwhelm me. I try to keep really focused on getting the next thing done. I try to remember I am only one person, I can do one thing at a time. I am bad at cutting myself some slack but I have worked to get better at it.

Probably, most importantly, I try to spend part of every day ‘being present’ – noticing what my child or children are doing. Remembering that they have each other for the future. Really watching & experiencing the wonders they really are- looking at how far they have come, the love they show for each other, caring for others. It helps to remind me that, altho I sometimes have a bad day/ horrible parenting moment, my kids really seem pretty ok- sometimes bratty or crazy in their own rite- but then they show me who we really are as a family. Sometimes, when I ready to leave for the grocery store and the twins hug me & say I love you, they call for their sister who they give the same. Something about your 4yo blowing kisses to her sibs to say goodbye, waving & yelling “I LOOOOOVE YOU!” back thru the door- it just lifts you. Days are harder when I don’t have the time to ‘notice’- and sometimes there are lots of those. There is a great blog post about parenting. It’s not exactly about my experiences, but it’s a good reminder to all parents- a quick summary is that we will look back & be happy to have parented, even if not every moment going through feels all that wonderful. (Huffington has that post here)

I always close EVERY day singing “Love You Forever”, 1-to-1 with each kid. And they sing back in their own way- they actually have become good at it. Its my way of telling them, no matter what, at the end of the day, you are the love in my heart- and you always will be.

And whenever I need a reminder of what it’s all about, why it is that I do what I do, I only need look here:

Outdoor Play

Getting outside more has been a goal of mine for some time now. This week, I finally got some time with a nurse so that I could go get the final pieces of wood and hardware for our latest outdoor adventure. THESE are the faces of SUCCESS!

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Seriously- Romance?

I sign on for the National Poetry Month Blogroll at BlogHer and their prompts already have veered far from my life. The best romantic poem? Seriously? Who reads those? More importantly: who CAN read those??

Don’t get me wrong, I have LOTS of love in my life- just none of a romantic nature. My children love me to the moon & back, & I them. Some of my nurses love me, in addition to loving my kids. They show this through their thoughtful encouragement for the day-to-day, in baking for friends & being sure to bring me some, by repairing a broken screen door during the overnight shift. My kids’ biological and adoptive families share love with us all the time, but “romance”- LOL

At one-point, a few friends suggested I post a profile on an online dating site- they even began crafting my profile description. In keeping with the “spirit” of the BlogHer challenge, and honoring poetry in my posts all month long, here is my version of my poetic personal ad:

SWF likes:

Leisurely strolls through hospital halls

Internet shopping, not crowd-filled malls

Long, 3-4 hour, grain-free meals

Ortho-clogs, ne’er spikey heels.

 

Tall & smart & kind & stressed

Medical emergencies at her best

Many children at her knee

Happy, smiling, busy bee

 

Seeks:

Kind & strong & loving man

Medical training a plus my friend.

Helicopter pilot a valued skill-

Quick land on hospitals for a thrill-

Soft of heart & quick of mind

Cherished partner love to find.

 

Not thinking it would work, but there it is: romance. 🙂