Make-A-Wish

This has been a tough week (ok, tough weeks). Insurance battles…respiratory treatments…blood clots. Those pretty well sum up what the past 3 days have been like.

In the midst of this, Chris and I had the opportunity to speak at a Make-A-Wish event tonight. We had the chance to share Kai's medical journey and how MAW helped to provide strength, joy, and hope throughout. 

Those that were involved in Kai's wish know the profound impact it had on him; he beams when he speaks of his playhouse and, most importantly, blue slide. Head on over to the Make-A-Wish Michigan website (michigan.wish.org) to see a picture of Kai that captures the essence of the joy this playhouse has brought. Certainly the wish itself has provided him with an escape--a chance to play and forget about not feeling well, something a child who has spent most of his life in institutions, either orphanages or hospitals, desperately needs.  

But, the process itself allowed him a healthy amount of control in a situation that seems uncontrollable.  There’s very little control for a young child in an orphanage; there’s no decision making in when and what to eat, when and where to sleep, what to wear. The list goes on. The same holds true for significant medical problems. Kai has no choice in medications, pokes, hospitalizations, and surgeries. He had a say in the blue slide…in having a climbing wall…in having sky and grass painted on the inside.  The barn playhouse with a blue slide gave him a voice.

This will make us forever grateful.

As such, we are looking forward to a couple events that we would like to extend an invitation to. These events support Make-A-Wish Michigan and, thus, kiddos like Kai.

The first is the Magical Wishes 5k. The race, which will be held on August 24, will take place in Hamilton. The proceeds from registrations will directly benefit Michigan kiddos waiting for wishes to be granted. Not only that, but the event is also organized by one of our fabulous Make-A-Wish volunteers, Trista!  Please visit the Magical Wishes Facebook page for more details and to register. (https://www.facebook.com/magicalwishes5k)

The second event is the 2016 Walk for Wishes. This is an official  Make-A-Wish Michigan annual fundraiser. We would LOVE for you all to join Team Kai and come out on October 1 to complete the walk with us. It has to be noted, too, that Kai's picture is featured on the walk buttons this year; that alone is worth coming out for, right?! 

The walk is an exciting stroll through John Ball Zoo. Registration for this is free. While registration is free, walkers are encouraged to get financial donations. If walking is not your thing, we would also appreciate donations. Registrations and donations can both be made on my personal fundraising page (http://wfww.kintera.org/2016/teamkai16) OR on the Team Kai page (http://wfww.kintera.org/2016/teamkai).

It’s important to note, too, that Make-A-Wish ensures that more than 80 cents of every dollar raised goes directly to granting wishes.

We hope you can join us to help make wishes come true! Go Team Kai! 

Summer update

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!

Wish Reveal

Recently I read this on a fellow adoptive parent’s FB page…

“Just because a family that has adopted says that it can be downright hard, does not mean that with all of their might they wouldn’t do it again and again. Admitting the hardship is not an admission of regret, it is evidence of the resolve.................” (Katie Baron).

Life after adopting Kai has been hard. We have been faced with dealing with more extensive medical issues than we expected. The past 18 months has been a whirlwind of doctors and surgeries. The 80,000 miles we’ve put on our vehicles in the past 18 months proves just that. And then there’s information. Lots and lots of information to process.  I know more about the cardiac, pulmonary, neurological, GI, endocrine, and genetic systems than I ever anticipated. The human body is extraordinarily complex! Of course, the medical intricacies are only compounded by his past trauma of being an orphan. I can’t recount how many hours Chris and I have tried to calm Kai, inconsolable, crying “I’m afraid you’re gonna leave me”.

It’s been very hard.

But, it has also been perfect.

His boisterous personality has added so much vivacity to our family. This, in turn, has given us an incomprehensible about of joy. Admittedly, his silly personality makes us cringe sometimes, but he makes us continually laugh. We are in awe of the skills he acquired since coming home. We admire how relatively well he adapts to the challenges he faces. His upbeat outlook on life is commendable. I think we’d be fooling ourselves if we said that we had the ability to articulate in words how much he has changed us for the better. It’s simply not possible.

One thing we do know for sure is that, amidst this journey, we have met many extraordinary people/groups who have come alongside our family to support us. One is Make-A-Wish Michigan. Kai was referred as a Wish kiddo just over a year ago---and the rest is history. This organization, especially our MAW volunteers, Trista and Sue, has been a provision throughout this last year…beyond Kai’s actual wish.

The stuffed bear that Kai received after open heart surgery, appropriately named Make-A-Wish Bear, is his “go to” comfort after a seizure. 

He affectionately refers to Hamilton High School as Make-A-Wish School after the Magical Wishes 5K was held there last summer.

During Kai’s last hospitalization, we had a surprise visit from his volunteer to drop off a gift, a much needed “pick-me-up”. Of course, this is all in additional to meals, flowers, cards, visits—too much to even mention. MAW has not only provided a “good” for Kai to look forward to, but it has worked relentlessly to meet the needs of our entire family. I’m sure our volunteers are the “best of the best”, but they have definitely been God’s hands and feet to us.

Likewise, so have the construction crews that worked with us through Make-A-Wish.  Mike, from Out on a Limb Playhouses, has been a gem to work with. Without doubt, Kai knew that Mike would do anything to make his wish perfect. And he did. In fact, he went above and beyond…from finding the perfect blue slide to painting the interior “just right” to adding a special metal sign to the front of the barn. Not only that, but during Kai’s last hospitalization, Mike called, checking in on how Kai was doing. Knowing that Kai was not well, he, along with his crew, decided to FaceTime our family. This gave Kai the opportunity to get a glimpse of the building progress…along with the reveal of the anticipated blue slide!

Through Kai’s wish, we have also connected with Dan Vos, of Dan Vos Construction. The initial connection started with discovering that the company had donated all of the materials for Kai’s barn playhouse. However, we have also bonded with them through the fact that his family also has 2 children adopted from China, one of which has a congenital heart defect. We look forward to having the opportunity to have their family come and enjoy Kai’s new playhouse.

Thursday was Kai’s Wish Day when he received his barn playhouse. Make-A-Wish has given Kai a fantastic playhouse that he enjoys immensely, but it has also given us friends for life. It has strengthened the friendships we already had—we were blessed to have 70 supportive friends at our home Thursday night to celebrate Kai’s Wish Day. This has given our family hope and strength to face upcoming medical procedures. As John, VP of Dan Vos Construction, told us Thursday at our reveal party, Kai’s adoption, medical story, and wish are a “God thing”. That definitely helps give us the resolve to do whatever Kai needs.

Click to watch Kai's wish reveal video:

Wish Reveal

Epilepsy

While we wish our Spring Break was filled with sun and sand, we, instead, got to make a trip--once again--to Ann Arbor. 

Sure, it’s not exactly a vacation hotspot, but it was a very informative trip.

This will be a very short post, as we’re continuing to process Kai’s epilepsy diagnosis…a new diagnosis to add to an ever-expanding list of medical issues. True, our “normal” has grown to include cardiac, pulmonary, GI, endocrine, and renal complications, but watching him have seizures has been incredibly demanding. This normal needs to sink in yet.

However, to pass along an update, we learned today that the specific type of seizure that Kai is having is called a complex partial seizure. Specifically, his are originating in the left temporal lobe. Originally, it was suspected that he was having simple partial seizures. Both types are focal seizures, meaning they occur in one region of the brain. Complex partial, however, start in one small area of the temporal lobe, but quickly involve other areas of the brain.

Here are just some quick facts about Kai’s complex partial seizures:

*all seizures are caused by abnormal electrical disturbances in the brain.

*He typically has an aura before having a seizure. This is sort of a “warning” before the actual seizure.

*He has had abnormal muscle contractions and eye movement. He also has automatisms, or automatic movements.

*Kai has also had some abnormal sensations/tingling.

*Along with this, there is impaired responsiveness.

*Unfortunately, the seizures have affected his heart rate. This, of course, puts added stress on his already complicated heart.

*The seizures are typically lasing between 1-2 minutes.

*He has a clear postictal state. He is generally confused and agitated immediately following the seizure. He has fatigue and exhaustion that lasts for hours.

As we continue to work with geneticists to determine if there is an underlying syndrome caused by a chromosome deletion or addition, Kai will soon be having an MRI to determine if his seizures are related to a congenital brain defect. There is no indication that there is a tumor, but rather a defect that he was born with. This will give us more information about how his funky little body is functioning.

As we wait for his MRI and genetic test results to come back, we’ll keep working to control and manage Kai’s seizures with meds (an adjustment is probably coming next week)…and working on understanding our newest normal! 

T-Shirts

I intended to include this in our last post, however completely forgot! Anyway, we have had multiple people ask about purchasing Team Kai shirts recently. So, we will be placing another order, hopefully by the end of the week! Shirts are unisex sizing and are $10 each (you can pay me directly or though our PayPal account. I can give information for those interested.)


Here is the adorable Kai modeling--who can resist?!

Please let me know by Friday, March 18 if you are interested in ordering; you can comment on the blog, email, or message me on Facebook. 

Thanks!

Expect the Unexpected

“That's your solution? Have a cookie?' Astrid asked.

 'No, my solution is to run down to the beach and hide out until this is all over,' Sam said. 'But a cookie never hurts.” 

While I was reading a book titled, Gone, last summer after Kai had heart surgery, I remember coming across this dialogue. I laughed out loud; it was so indicative of how I felt at that time. Just overwhelmed with  all things "hospital" and ready to run down to the beach with a cookie (or chocolate and a Diet Coke) to escape reality for a while. 

I'd be lying if I said we didn't all slightly feel that way again. A beach and a cookie sound exceptionally good at the moment.  The past 2 weeks have been a whirlwind of new doctors, medications, testing. The list could go on and on. While I'm not going to share all of Kai's story, I thought I'd share just a bit of what our experience has been lately.

As I've posted previously, Kai has been experiencing hematochezia, or GI bleeding. To help alleviate this, Kai was scheduled for a polypectomy on Monday, February 29.  While I would not consider Kai a "morning person", as Sam lovingly refers to him as Grumpy Cat, he seemed unusually tired and whiny that morning. Once embarking on the 3 hour car ride, the crabbiness continued; however, we were delightfully surprised when he began to sit quietly and take a nap around the Lansing area. Upon arrival, we began to recognize that his sudden compliance was not actually a good thing. Kai was lethargic and unable to walk or speak. (For those of you who know Kai, he is rarely at a loss for words.) 

Within moments of heading back in the PACU, Kai's little body began to give up. He became unresponsive, along with other signs of trauma. While we originally had thought that this was possibly contributed to blood loss and a drop in hemoglobin, we learned through his blood gas testing that his blood sugar had dropped into the teens. This, of course, is a level that cannot continue to support life.  I've seen medical staff move quickly before when Kai has coded, but it was almost surreal how fast they moved. Really, thinking back on it know, it's sort of a blur. There were things happening that Chris and I didn't even realize until after the fact. 

Throughout that day,  his glucose levels continued to fluctuate dramatically. He was given emergency dextrose 3 times, along with dextrose being given via IV. The extreme blood sugar issues were attributed to how his complex anatomy was able, or unable, rather, to store glucose in the liver.  

By the following day we  seemed to have the blood sugar issues figured out and we were on our way home. True, we didn't get the bleeding issue resolved, but had plans to look at surgical procedures in the near future. 

While Kai felt miserable for most of the week, we knew that we were on the right track to helping him feel more like himself. We knew we were on the right track- that is until Friday morning. Kai was presenting similar symptoms to those he had Monday morning: lethargy, inability to stand or walk, inability to speak, and so on. Sure enough, testing showed that his blood sugar levels had dipped again. Because of his complex health history, local doctors told us to contact U of M, that there was nothing they could/would do.

Long story short, back to Ann Arbor we went. And quickly. Once there, we met with endocrinology...and cardiology...and  GI...and neurology...and  genetics. Who am I missing?!  All of this was so unexpected.

This is the part where I'm not going to share the whole story--partly because we're still trying to process all of the information that came at us this past week. To be honest, I don't think I can, at this time, even effectively articulate all of the scenarios and medical possibilities that we discussed with his team. It was mind boggling. However, it was 6 days of trying to fix the medical problems that he is experiencing at the moment...the GI bleeding, the low glucose levels, seizure activity that we had attributed to low blood sugar but learned was neurological, liver issues, concerns for something called fatty acid oxidation disorder, possible complications with Protein Losing Enteropathy, along with many other conditions I had never heard of before. Just today I received a call about an immediate confirmed kidney issue.

We don't have answers to all of these things yet, but hope to soon. He has several upcoming appointments in Ann Arbor to help resolve some of these issues.

But, as the list of medical problems seems to grow and grow, it became increasingly apparent that we also needed these hospital days to be 6 days of trying to figure out why he continues to develop complications.  Essentially, we spent time trying to put together the pieces of his medical puzzle. How is it possible for a  child to have severe, complex heart defects, pulmonary complications, GI malformations, neurological symptoms, kidney disorders?? While we won't have any answers from genetics for several weeks, we are looking the possibility of an underlying syndrome - a chromosome addition or deletion-that may be a contributing factor. While we know science is not at a point where it can "fix" chromosome disorders, having knowledge of his genetic code, we hope, will shed some light on how his body functions, which, in turn may help us to treat his many medical needs.

Until we have results, we'll just keep plugging along. As much as we feel like it, we won't really run away and hide :) Although I will probably have to keep reminding myself of that!

Thank you to everyone who supported us this week.  I know that I haven't had time to reply to them all, but thanks for the emails, texts, FB messages, etc.  It's incredibly humbling to have so many people thinking of and praying for our family!