t h e m a y f i l e s is foremost a family blog, chronicling everyday life. Life including natural, healthy eating (with recipes thrown in at random), home educating (with ideas popping up sporadically), an attempt to homestead on .2 acres (with very meager yields), raising 3 of 4 children with a rare genetic disorder, and lots of highly personal family triumphs and failures. You may also find an eclectic array of musings on politics, exercise, sewing, emergency preparedness, backyard chickens, and religion. This blog isn't a campaign to glorify anyone or anything. Just simply a record.


Denver Road Trip

Somethings we have to do as Mothers and Fathers, just about rip our hearts out. In fact, they can be downright painful. We wish so much we could trade places, and understanding with our little ones. We want to wrap our arms around them at the right moment and find the right words to talk them out of a locked bathroom at the hospital. The last 5 months have been that way with my big girl...
...and my baby girl.
Thankfully, this little boy is just happy to be alive and doesn't seem to know too much about what has been going on.
And this one, I worry about too. For so many different reasons. I don't worry about bronchiectasis and lung transplants, but I worry about the burden of being the only "healthy one." My sweet little pip who, hasn't needed a doctor since she was 6 months old.

Life took us to Denver last week. We packed 4 kids and Grandma in the car and headed through the mountains. Denver is the closest Center of Excellency for Pulmonolgy, and more specifically PCD. A presenting pulmonologist, I met in St. Louis at the PCD Conference, practices at Denver Kids. We spoke at length about the children. With his, and our local pulmonologist's blessing we took all three children out to Denver to participate in a diagnostic research study.

What seems "non-invasive" to an adult can be petrifying to a child. We spent 9 hours at the hospital on Thursday. We came close to falling apart at the end of the day, but we muddled through it somehow. Holding your child and whispering comfort as they are bound tightly in a blanket lying on a table is wretched. As Ellery and Emmet, each in turn, looked up at me sobbing with fear filled eyes, I barely held it together. Thankfully that procedure was only minutes.

These visits are hardest on Ellery. She is so smart, she isn't fooled for a moment about what is going on. She listens and absorbs. We know she is internalizing this, and I feel so unequipped to know the right way to help her process all this information.

Beyond the emotional stress, she has been battling severe ear pain for two months now. Her clogged tube is unresponsive to oral and topical antibiotics. Finally, this week her tube will be replaced and hopefully that will offer her some relief.

I felt the trip was successful.

Most telling was a test which measure Nitric Oxide levels in their nose. This one was a little fun, because with a squishy probe up their nose, they got to blow on party favors. This specific test is not available in Utah. Actually all four children were tested. A person with PCD is likely to have levels below 100, while the average person has levels above 800. Sure enough, Ellery, Emmett, and Berkeley averaged between 25-35, while Callista topped out in the 900's. I guess that particular test works.

Ellery's lung damage is consistent with Primary Ciliary Dyskinesia (PCD). Her right middle lobe and the corresponding area in her left lung both show significant damage, and permanent collapse. Her lower lobes are beginning to show signs of bronchiectasis, a permanent widening and damaging of the airways. However, her lung function remains excellent! Her body has found ways to compensate. These results from her CT scan were not better and not worse than what the doctor sees from PCD children of comparable age.

We had reassuring news from Emmett's x-ray. It showed no significant abnormalities. He will receive a CT scan here in Utah however, so all the doctors have a firm grasp on the progression of his disease.

The visit reaffirmed, PCD is a disease not well understood, even by the specialists. There were no good answers to my biggest questions. Those questions that weigh silent and heavy in my mind. What will life look like for Ellery, for Emmett, for Berkeley in 15 years? In 30 years? In 60 years? Will there even be 60 years? No answers.

And so I try to take hope because they don't have cystic fibrosis. I try to take hope as they are growing and developing into beautiful, unique individuals. I try to take hope they will be "lucky ones" not on a lung transplant list, or at least never needing their turn when their name comes up. I try to take hope that they aren't in the hospital dealing with pneumonia or psuedomonas or mycobacteria. I have much to be grateful for.

Now... on a lighter note...
A highlight of the trip was spending time with my kindred spirit Jessica. We ate dinner in her home (and that is truly what it felt like, not just a place a mom, dad and kids live), used her washing machine, laid out on the couch, and watched the children play. Our visit ended with a joint trip to the children's museum.
I love that not a single child in this picture is looking at the camera. Classic.

I wish I could spend hours upon end as a fly on her wall observing the tender, instructive way she interacts with her children. I have so much to learn from her.

And a final note...

Nothing against Berkeley, but I told Brent, I think I should have stopped at 3 children. This trip seemed to reinforce, I am teetering on becoming a frazzled, out-of-control mother. I cannot be on time for anything anymore, I seem to forget about every responsibility I have, and Emmett called 911 in the hotel room (remember this was right after we checked into the hotel with the children's hospital rate). Disaster.

My mom was so helpful and wonderful to have with us. She tagged along everywhere without complaining. We couldn't have done it without her. We even got to share a laugh on the ride home. Ellery gazing out the window cries out with excitement, "Daddy, Daddy, did you just see those two horses? There was a horse on another horses back. Dad can you believe that? What was that silly horse doing?" The adults in the car couldn't stop laughing. Poor Ellery was so adamant, she thought we didn't believe her. We didn't share with her why we couldn't stop snickering. We will save that lesson for another day!


HanksFam said...

Rebecca, you are an amazing mother. Maybe I already told you this, but I remember a day when we were riding Trax up to Salt Lake to a convention...you were telling me how you had asked your sister what she did all day as a stay-at-home mom. How little we knew.

My kids have a muscle disorder. I, too, have spent countless hours trying to get answers. And I also wonder what the future holds for my children. You are amazing for searching so diligently. I hope things turn out well!

Christy said...

I know you have wanted to keep this a private matter as much as possible, but I really appreciate your candidness with regards to your own feelings. You never know who else might be dealing with a similar challenge, and your inspiring faith and determination through this most difficult time in your life is a wonderful example. Thanks for sharing, even when I am sure it is almost too hard to write about. You guys have been in our prayers for a long time now, and will continue to be. We love you!