Since
I posted last (which was in April!), we’ve had a multitude of triumphs and
tribulations. Families of kiddos with significant health issues recognize all
too well that life is a never ending roller coaster ride. There are days filled
with excitement and exhilaration….and then the next uphill climb looms in the
distance. Since April, Kai has had many “good days” where his oxygen
saturations are stable (even in the high 90s—for heart moms and dads, you’ll
recognize how awesome that is!), he remained seizure free, bowel movements were
free from blood, and he was his typical exuberant self. Conversely, he’s had many days where he
resorts to tears (or screams) out of pain, discomfort, and frustration. I’ve
lost count as to how many times he had cried, “Somebody just make me feel
better”. When he is able to get comfortable, all he wants to do is sleep.
The
primary source of his agony right now is pulmonary related. Recently, breathing
has become increasingly laborious, as his body is not able to move fluid,
mucus, and particles from the lung. The result is chronic respiratory tract
infection, excessive coughing, and low oxygen. Just yesterday, his oxygen
saturation levels fluctuated between mid-high 60s, which made his heart work
overtime, with heart rates over 200. To say he’s miserable would be an
understatement! We’re hoping to aid his lung in clearing itself with the use of
a respiratory therapy vest and airway clearance system. RespirTech, the device
company, hopes to have the machine here in the next 2-3 days.
Additionally,
there continues to be a GI component to his discomfort. While we have been
conservative in managing his GI bleeding, it is clear this it is time to become
more aggressive. Kai is scheduled for surgery on August 25. The plan is for that
to be a bowel resection (pulmonology will also be going into the lung during
the same surgery, as well as biopsy for bronchiectasis, damage of the airways).
As
we continue to manage his many health issues, we have also remained in
communication with genetics. As of Monday, we have begun a new round of
testing. Well, first U of M will battle insurance to prove that it is necessary
to continue genetic testing and then we’ll
begin the actual testing! While Kai was
hospitalized in March, he had chromosome testing. The purpose of this test was
to see if Kai had any chromosomal abnormalities, such as any additions or deletions
in the number of chromosomes. The analogy the geneticist uses to explain it is
to think about a set of encyclopedias. When you get a set of encyclopedias, you
want to check and see that you have a complete set. To do so, you look on the
outside of the books for volumes A to Z…but you never open it up and check the content…just
be sure that you have all the books. Kai’s first set of genetic testing was
similar to that—-just checking to see that everything is there. On Monday, to
our surprise, we learned that this testing is normal; he has all 46! This new
set of testing is like reading those encyclopedias for content, making sure
that it says what it should and that it makes sense. Essentially, we will be working
on reading all 25,000 or so of Kai’s genes, looking for mutations. As you can
imagine, this is a much more tedious and prolonged process. We hope to have
results by Christmas time.
Until
then, we’ll just keep riding the roller coaster, hoping for more ups than
downs! A few “ups” to celebrate:
*He’s
down to 10 medications that he takes daily. I know that seems like a lot, but
it’s such an improvement.
*A
generous hospital and RespirTech who are helping us provide the vest/clearance
system for Kai, since our insurance company does not cover “life-saving devices”,
only therapeutic equipment.
*Since
our last neurology appointment and change in medication, he has only had 1
seizure!
*
A fun and relaxing vacation. Kai was miserable, but at least we got to get away
for a much needed break—no hospital visits for a week!
Speaking
of our vacation, we have to share a few of our adventures…because who doesn’t
want to hear about a place that this bridge leads you to?!
Thanks
to the help a beloved colleague and resident expert on all things nature, Kathy
Nemeth, we planned some time away in the Outer Banks, North Carolina. We knew
Hatteras would be good for us…laidback, quiet, on the ocean. Here are some of
our escapades:
Of course, we spent lots of time on the beach, which was literally just a few steps away from our lodging. Sam loved the ocean and salt water; Kai preferred to stay on the sand!
If the boys weren't play in the sand or water, they were fishing. I think they both found a new activity to enjoy together!
Our nights were filled with crab hunting!
Sam, our curious, nature lover enjoyed discovering all of creatures on the island. We had one rainy day, which was the perfect day to head to Cape Hatteras Lighthouse. While there we took a class on the island's sea turtle population and nesting sites.
Sam was excited to share the information he learned--what loggerheads eat, nest, can become "cold-stunned". He even decided spend his souvenir money on a stuffed sea turtle. His enthusiasm was contagious. The following day as we returned to our room at night, we found that the staff left him a surprise after cleaning. Only in OBX would we find a towel turtle!
After getting the ok from the hospital, we boarded the Hatteras ferry to head to Ocracoke Island. It was a day filled with sun, good food, pelicans, and learning about Edward Teach (a.k.a. Blackbeard).
We also spent time kayaking in Pamlico Sound...sadly no pictures to share of those excursions.
We're thankful for some time away. The ocean air definitely helps the spirit!
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