New Information

In my previous post I mentioned that Kai would be heading back to U of M on Friday...our home away from home...

We headed back because of some complications and issues including low oxygen saturation levels (and cyanosis), even after his open heart surgery this past June. Kai’s cardiologist has said that he hasn't encountered his symptoms post-op before, so he had consulted other institutions, such as Boston Children’s Hospital and CHOP, regarding his situation.  Friday's procedure would be diagnostic in nature - to see if there were any abnormal arterial or venous connections. The procedure was also expected to be intervention. The surgeon was expecting to place coils in these, to stop the growth and transportation of blood where it should not go.  All of this is especially important as we were recently told by the Emergency Room doctors in Grand Rapids that Kai was, once again, in heart failure.

Friday’s heart procedure was positive. It clearly showed that the heart defect repair done in June was functioning ideally. While Kai’s heart will never work like a "normal" heart and he will deal with his heart defects his entire life, all of the data collected showed that his heart was functioning as well as can be expected. It also ruled out the heart failure that we were recently told - -most emergency room doctors deal with adults, not children with congenital heart defects, which are vastly different. Most ER doctors deal with issues like chest pain and heart blockage, many do not have experience with complex heart deformities. We believe that the ER diagnosis of heart failure was based on a lack of knowledge of a single ventricle, single atrium heart functioning.

As thrilled as we are that his heart is functioning well, we are equally as devastated about what that means for his lungs. As we met with doctors and surgeons on Friday, we discussed the likelihood that Kai has a serious pulmonary disease.  While we are waiting on his official diagnosis from the pulmonologist, doctors feel that Kai has a lymphatic disease known as Plastic Bronchitis. There is a possibility that he also has a disease called Protein Losing Enteropathy.  Both diseases are directly related to his heart defects; specifically, both diseases develop after the Fontan procedure, one of the surgeries that Kai has had to repair his heart. Plastic Bronchitis is a lymphatic flow disease, meaning that there is abnormal circulation of fluid through the lymph nodes. This causes serious respiratory complications. Children with this disease experience lymph fluid buildup in the respiratory system and airways and forms bronchial “casts”.  These casts can cause life-threatening airway obstructions and cause asphyxia (suffocation).

Here is some of the information that we received from the University of Michigan about these two diseases:

PB is an extremely rare and potentially fatal disease.

Lymphatic flow disorders refer to a group of diseases characterized by abnormal circulation of lymph fluid. Lymph vessels carry lymph fluid to veins, where it returns to the bloodstream, playing a crucial role in immune function and fat and protein transport. (Doctors have told us that this disease results in decreased immunity and makes patients more susceptible to a variety of illnesses, which requires increased hospitalizations).

Very little is known about what causes the two complications known as plastic bronchitis (PB) and protein losing enteropathy (PLE). Both complications are severe and incurable. Someone with PLE loses protein from their blood, which leads to leaky blood vessels and fluid build-up. Patients experience growth problems, blood clotting issues and develop infections and immune abnormalities. People with PB develop large protein casts in their airways, causing breathing difficulties.

Obviously, we will be seeking treatment immediately.  Kai’s has an appointment with the pulmonologist early Monday morning at the University of Michigan. We anticipate that he will undergo extensive testing, including a broncoscopy and lymphangiography.  Because of the rarity of the disease, we have been told that treatment options are limited. We will be working to control symptoms by using medication to help keep airways open, as well as to break apart the bronchial casts. This will lessen the chance of suffocation or choking. We will also be consulting with CHOP (Children’s Hospital of Philadelphia), the premier pediatric pulmonary hospital. CHOP is the only hospital in the country to offer a new surgical treatment called lymphatic duct embolization, which may possibly be an option for Kai. 

At this point, we have definitely not become “experts” on what this means for Kai and our family yet. To be honest, it’s quite overwhelming to consider a new set of complications to consider and treat. But, we absolutely are in awe of Kai's medical team. Not only are they talented medical professionals, but they continue to be wonderful friends. We appreciate prayers for wisdom and guidance as we, along with doctors, begin this new chapter in our journey.

Never a Dull Moment

It’s been a while since we’ve updated publicly about Kai. This is probably because a lot of things have been up in the air since this summer.  More likely, it’s because we’ve taken in so much information that our heads feel like they are spinning. As we have been working as a family to process what we’ve experienced the past year with Kai’s health, and work toward harvesting confusion and pain into wisdom, we’ll be the first to admit that it has been hard to do.  Trying to go on with life, keep track of obligations, and do “normal” things, often leaves little time to make sense of life. There are days when it feels downright overwhelming. Our days are whirlwinds. So, as it has been challenging to work through individually and as a family, it, naturally, is difficult to articulate to others what we’re facing and how we’re feeling. But, as we’re coming up to further medical procedures, I am going to attempt to give it a try. Here is a brief and condensed timeline of our past month or so.

I’ve mentioned previously in posts that Kai has experienced some complications and issues including low oxygen saturation levels (and cyanosis), even after his open heart surgery this past June. We have seen oxygen levels in the high-60s to the mid-90s, and everything in between. This has been something that we have been keeping a watchful eye on ever since. We’ve been especially attentive to this because it’s not common. Kai’s cardiologist has said that he hasn’t encountered his symptoms post-op before, so he had consulted other institutions, such as Boston Children’s Hospital and CHOP, regarding his situation. After consulting, it became increasingly clear that his symptoms were probably not a cardiac issue, but, rather a pulmonary issue. Because of the increasing frequency and duration of symptoms, we had been in contact with doctors throughout October, realizing that it could no longer be “let go”. So, (reluctantly) we scheduled surgery for Friday, November 20.

Because we never have a dull moment in the Timmer home, around the same time that we were trying to wrap our minds around pulmonary/lung issues and what that could possibly entail, Kai began having tachycardia issues. For non-medical readers, basically, he was having an abnormally fast heart rate.  These “episodes” would cause him to have a hard time catching his breath, profuse sweating, and nausea/vomiting.  He would also clutch his chest and say that his “heart was going too fast”. We discussed with the cardiologist different possibilities of problems with the heart’s electrical conduction system. To celebrate, tomorrow is the last day he needs to wear his heart monitor - -it’s been a month of crazy dry, itchy skin (from the “stickies” on his chest) and trying to keep a very curious 3-year-old from trying to push buttons that are attached to him!

As many of you are already aware, Kai ended up in the emergency room on Sunday. Remember what I just said about never having a dull moment?! Because of his heart defects, many people assumed that I had taken him there because of heart issues. Not specifically.

I knew he was sick with some sort of respiratory infection or virus. However, with all of his other health issues, even a common cold takes a huge toll on his little body and has been known to send him to the hospital.  So, respiratory illnesses need to be taken care of right away.  This is especially true if we’re now looking at lung problems. Plus, that morning he oxygen sats were quite low and he was struggling to breathe, even to the point of retracting and nasal flaring. After running some tests, we found out that he had bronchitis.  After being on some strong antibiotics since then, he’s now feeling much better, as far as the bronchitis goes.

Although I was frustrated that he was sick… and we needed to head to the hospital again… and he had to go through tests… and he needed to be on more meds, I realize now that it was probably a blessing in disguise, as we found some further, unexpected heart failure issues. As much as I was devastated Sunday, because really I – he—we did not need one more problem to try to work through, I’m thankful now that we discovered this and can now work toward treating it. So, we’re now managing with meds and working on developing a plan, keeping our scheduled surgery date for next week. Realistically, we know that our options to “fix” this are becoming limited. But, we’re hopeful that he’ll come through this stronger, like he always does. Hey, since Sunday, he’s lost almost 4 pounds of fluid, so that’s a start!

There is no doubt about it, Kai is a fighter. There is nothing –not even heart failure or surgery or a heartrate of 300 beats per minute-that can keep him down for long.  He’s happy, silly, and spunky even in the midst of all of this. So much so, that sometimes we forget how much his little body is going through and how miserable he probably really feels. We often have people say that “he looks so healthy” or “he acts so happy” or “you’d never know that something is wrong.” It’s easy to forget how complex his health issues are because of how full of life he is.  If only looking good was a true indicator of health! Even as parents, now that he’s feeling SO better with antibiotics and the bronchitis is clearing up, it’s hard not to be in denial that there are more concerning underlying issues going on. But, as Chris said tonight, “he looks so much better than he has in the last week, but I’m more worried than ever.”  I can’t imagine what all of this would be like if he didn’t have such an upbeat personality and demeanor!

So, the long and short of our month has involved continued and new cardiac and pulmonary issues.  We’d appreciate your prayers for:

* wisdom for doctors and us, as parents… that we thoughtfully determine the right course of treatment.

*being free from any viruses, infections, etc. so we can just focus on the major cardiac and pulmonary issues AND so that sickness doesn’t interfere with treatment.

*rest…we ALL need sleep.

*peace with considering the possibility of travel.

*Kai’s continued zest for life, in spite of all that he goes through and how he feels, even when it doesn't show on the surface.

Thanks!

Hope. Strength. Joy

The goal of Make-A-Wish is to promote these things…hope, strength, and joy. In fact, the mission statement for Make-A-Wish is to “grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.” Two days from now, we get the opportunity to meet together with other Make-A-Wish families and supporters for the Walks for Wishes event at John Ball Zoo. Walks for Wishes is a fundraising event that celebrates wishes that have already been granted and raising funds for future wishes. We are looking for YOU to come alongside of us for this event. I’ll tell you how in a minute!

For those of you who do not know, Kai is a “wish kid”. Before becoming one, Chris and I could not have imagined the positive impact this organization would have on our family. Sure, part of the impact is pure fun. Kai has wished for a farm playhouse with a blue slide. Trust me; the blue slide is a critical component to this whole structure!! We have final design plans for the playhouse and have met with Mike, the builder from Out on A Limb Playhouses. While Kai’s will be slightly different, here is the basic idea of what his playhouse will look like:

We know that, with all he has been through, Kai is just ready to get out and play! Of course, he is getting a material possession from his wish. But it is so much more than just getting something. When he gets to work on the design or help the builder put flags up in the yard to mark where it will go, he gets to forget about all things medical for a short while. He gets to think about just being a “normal” 3 year old. The rest of us get to forget about the stresses of his illness for a short while. It’s good for our souls to have this shared positive experience. Through Kai’s wish, we have also had the opportunity to gather and talk with other Wish families and share the similar struggles and triumphs. Each child’s journey is different, but there is comradery in speaking to other families who understand our highs and lows. We’ve also built relationships with the Make-A-Wish staff and volunteers who are so passionately dedicated to making life more enjoyable for kiddos. All of this is very empowering.

While I write this, I have to admit that before we became a Wish family I had heard of Make-A-Wish, but I didn’t really know anything other than the name. Like I said above, the organization grants wishes for kiddos at least 2.5 years old who have life-threatening illnesses. Receiving a wish involves 4 steps: “each step builds on the next to create amazing experiences that delight wish kids and their families. A wish experience is frequently a source of inspiration for children undergoing difficult medical treatments.” The first step is the referral. Children can be referred by medical staff, parents, or themselves (if they are old enough). Secondly, Make-A-Wish determines medical eligibility by contacting the treating physician. After that, kiddos get to express their wish and the team gets to work. Most children make a wish that falls into 1 of 4 categories: I wish to go…, I wish to meet…, I wish to have…, I wish to be. The last step is creating joy! The Make-A-Wish team works out all of the details and creates an unforgettable experience and works toward making each wish perfect! I can tell you from personal experience that this organization and its staff and volunteers are amazing. I know that they deeply care for Kai and our family!

Now, about the Walk for Wishes event…

We are looking for friends and family to participate in this event with us –to show support for Kai, all of the other kiddos suffering from life-threatening illness, and the organization that works to help! Although the walk is only a couple of days away, we’d love for you to sponsor Team Kai. Please know that the funds raised do not go directly toward Kai’s wish, per se, but toward meeting the financial needs of all wishes. To do so, head to the Make-A-Wish website (michigan.wish.org) and click on the Walk for Wishes icon. Once you are there, scroll down to the “Ways to Help” heading located on the left side of the screen.  There you can make a donation.  Click on “donate to a walk participant”. Once you do that, you will be prompted to do a name search –just search for my name. Once you click on my name, it will direct you to my personal donation page. To donate, just click the blue “give now” button.  For those of you wondering, MAW strives to use the majority of funds raised to do what their name says –make wishes come true. More than 80 cents of each dollar goes directly toward granting wishes!

Thanks for considering and helping to change lives! 

A Thousand Reasons

When life gives you 100 reasons to cry, show life that you have 1,000 reasons to smile.

Recently I had someone ask me why Chris and I chose to adopt a child like…that.  

As you can imagine, at that moment a million thoughts and responses swirled through my head. My child is not like that. Sure, he has a heart defect. Ok, several heart defects. Sure, he has a pretty significant scar on his chest. But, he’s not “bad” or “wrong”, which is what that implies. No kiddo with heart problems ---or any other health issue—is.

The same day I had this conversation I saw this quote posted by the mama of another heart kiddo. It is so true. When having a child with multiple, life-threatening heart defects, there are 100 reasons to cry.

There are doctor appointments— so many doctor appointments.

There are surgeries and complications.

There is watching numbers and levels.

 There is rushing to the emergency room.

There are the doctor bills.

There is trying to find the balance of taking care of the “sick” child and still being there for the “other” kid.

There are sleepless nights filled with worry.

There is waiting and unknowns.

There’s no doubt about it; it’s hard. It can easily get tiring and overwhelming. I think the “that” opinion and attitude happens when people can’t see past the reasons to cry. I know I’ve said this before, but this journey of adopting and our crash course in cardiology is one of the toughest things I’ve ever done. But, it’s one of the best. While, for his sake, we wish that Kai did not have to experience all of the meds, and pokes, and appointments, it has changed who we are in ways that I would never want to take back. I think life-threatening illnesses tend to do that to families. It’s probably cliché to say, but children who are faced with death have a lot of teach us about what it means to live.

That has given us 1,000 reasons to smile.  As strange as it may seem, we smile more now that we ever have. I think we have more to smile about. Or, we’re just much more aware about what we should be smiling about.  Of course, we smile about pink fingers and good INR checks. We smile about how Kai calls the Ronald McDonald House the Old MacDonald House. We smile at Kai each morning when he checks on his “playhouse”, which is really just a set of flags in the yard right now. We smile how each night at bedtime Kai asks if he can have cottage cheese for breakfast. Focusing on the smiling instead of crying is intentional. I think it’s the difference between having joy, rather than just happiness.

While life is incredibly hard with Kai’s health problems, he has brought more joy into our lives than is possible to articulate in words. But, one thing we've learned is kiddos with health problems - -kiddos like that are full of love and spunk and hope. And smiles!

Some of our reasons to smile

Wednesday appointment

Wednesday was Kai’s appointment at Mott Children’s Hospital. Because he’s still been experiencing cyanosis and other symptoms frequently, I left home early yesterday morning feeling quite apprehensive. As much as Chris and I are ready to figure some things out and have a plan, we’re not ready at the same time. It’s difficult to think about the possibility of Kai needing to go through additional medical treatments or procedures. To be honest, we’re ready for life to feel “normal”. Anyone with a child with chronic or life-threatening illness will understand that normal is relative. We know our normal will include administering what feels like an entire pharmacy of medication. It’s sad that our normal will include Kai being able to tell us how many mg of Coumadin he gets for the day or remind me that I forgot to give him his vasotec/enalapril.  Normal will include weekly blood work and restricted physical activity. But at least it won’t involve numerous emergency room trips, hospitalizations, or surgery for Kai.

Unfortunately, it looks like “normal” will have to wait for now.

Kai’s doctors don’t feel like they can let this go any longer. However, the situation and medical symptoms are perplexing to them. In fact, I was told on Wednesday that they’ve “never seen anything like this before”. Of course! So, right now U of M is consulting with Boston Children’s Hospital to come up with a plan. It sounds like the plan will include surgical procedures.  We suspect that this will start with another heart catheterization in the next week or so. Deep down, I think Chris and I knew that this was coming. It’s just disappointing. Kai is such a fun-spirited, lively, loving kiddo - even when going through medical procedures (well, minus bloodwork!). Our hope for him is that soon he will just be able to run and play and have fun like any other 3 year old.

On a positive note, Kai did well at the appointment, all things considered. He did not have any major “meltdowns” or moments of panic while there. With all of the trauma that he’s been through, this is HUGE! In addition to this, his pressures looked great. The functioning of his heart from the June surgery looks awesome (to clarify, the symptoms he is experiencing are not indicative of a problem with this last surgery.). So, while we know that Kai’s journey – our family’s journey- continues in a way that we were not expecting, we have so much to be thankful for. We’re thankful for the intelligence, compassion, and sense of humor his doctors have. We’re thankful for new friends and support systems that we’ve gained over the past several months and the friends and family that continue to support us. We’re thankful that we have a God that is keeping a close eye on us all and is teaching lessons about life that we could not learn outside of our adoption and medical story.

Make-A-Wish

So, I'm going to blame it on the pain meds...but I totally forgot in my last blog post to send out one last reminder for the Magical Wishes 5K tomorrow in Hamilton.The race benefits Make-A-Wish Michigan. 

Feel free to visit the FB page for more details and to register! 

https://www.facebook.com/magicalwishes5k

Also, if you're not interested in running or walking tomorrow, we would love for you to show your support for kiddos with congenital heart defects by sponsoring Chris! Naturally, I had to back out of the race, but Chris is running tomorrow on behalf of Mended Little Hearts West Michigan. Sponsorship money for MLH goes toward providing prenatal packs for families expecting babies with congential heart defects, providing care bags for children having surgery, educational materials, and so on. Just visit the sponsorship website and click on Kai's name under the "Select Your MLH Runner" dropdown menu.

http://www.mlhmi.org/MLH_Runner_Sponsor.php

Update

So, I realize that I still haven't posted an update on Kai after our last appointment at U of M. For those of you who have texted, emailed, or messaged me wondering how he's doing, we appreciate all of your love and concern for Kai! I promise I have not been intentionally ignoring you. I actually have been sick and feeling completely exhausted. We have been living in "survival mode" for the past 9 months since Kai has been home. My body couldn't handle  "burning the candle from both ends", so to speak, anymore and pneumonia has settled in. I have never had this before now but can say with absolute certainty that it is miserable! 


Unfortunately, life doesn't stop--especially life with a kiddo with significant health issues--when mom gets sick. So, I've been trying to focus my energy on doing what has to get done lately. So, emailing and texting have gone by the wayside. I should also apologize to our neighbors for our home;hopefully it does not look like it, too, has also gone by the wayside...scattered toys and bikes, dead flowers by the mailbox. Oh, and this...

Sam and Kai decided to make shakers with dried beans last week. Apparently, my precious children decided to throw the leftover beans into the yard. So, until I feel better, I guess we will have a garden. Of beans. In the front yard. 


Anyway, here are some details about Kai's appointment after he had some surprising cyanosis. We know that this will not share all of the details of this part of his story, but here is at least some information. He ended up with a battery of x-rays, pokes, and ECHO trying to figure out what was causing our little guy to turn blue after surgery. According to the cardiologist, the ECHO looked good as far as the surgical repairs are concerned. There are, however, some concerns about collaterals developing and rupturing. 

Because of all that he has experienced medically in his short life, paired with coming home only 9 months ago, we not only have to take his health conditions into account when making decisions, but also his mental and emotional well-being. For that reason, we are opting to do nothing but monitor him until August. No MRI. No heart catheterization. He needs time to just be a child... at home...and continue bonding. So, unless there are signs that things are negatively changing or progressing, we will wait until August to do anything else (aside from scheduled blood work and things of that nature). 

So, on August 12 we will head back to Ann Arbor and, hopefully, nothing surprising will come up before then!