Caysen Year Four: A Letter

What a year or two it has been! Looking back on just the change from last year’s birthday to this year, we are so so incredibly blessed. Last year at this time you had been in the hospital for almost two months. You still had a swollen belly, were puffy yet scrawny and malnourished looking, and  you couldn’t make it through the day without albumin – because the dreaded Protein Losing Enteropathy had crept in and was taking its toll. 

On Mother’s Day in 2016 you were sick, and we ended up going to the hospital. We didn’t realize that you wouldn’t officially discharge until November, and with a new four chambered heart. 

To think all you have been through in your four years makes me so incredibly proud of you. Just when I thought you would never eat by mouth, you decided you would. When I wasn’t sure about your motor skills, you proved me wrong. It’s a reoccurring theme, when I’m unsure of your resilience; you prove to me that you have it!

This past year brought chest tube after chest tube, poke after poke, 10 different fractures in your little body, bags and bags of TPN or IV Nutrition, a medical flight, 2 different children’s hospitals (with staff at both that we dearly love), and most importantly that beautiful new 4 chambered heart. 

Last year at this time the future was so uncertain for you. Could you make it home with your native heart? How much longer did you have? What were our options? I find that this year, some of those questions are answered while some never will be. You could not make it at home with your native heart – but it served you well. Our hand was forced when we ran out of interventions and had to list you for transplant. As for the question as to how much longer you have? We don’t know. But if you think about it, no one knows. While you might have even less than the average person – we are still so grateful for each day and plan to live each to the fullest. We couldn’t be more thankful for your organ donor!

Here is what you are up to now:

You are walking better after over 6 months of consistent PT. In fact, you spent some time this past weekend “racing” your brother on his bike. Your run is the cutest thing ever, you grin and laugh the entire time. I couldn’t help but notice your lack of blue lips, or the fact that you wanted to keep racing him. You couldn’t have done that before! You still show your weakness when it comes to climbing steps, but we are getting there!

You are wearing a size 4T shirt and usually 3T to 4T shorts. Your shoes are a size 6. You weigh in at about 33lbs. You love eating! Some of your favorites include chili, blackberries, chili cheese fritos, orange bell peppers, hot dogs, taco meat. You still have your G Tube that we put meds in, we push water to keep those kidneys happy, and we do some nighttime feeds.

Your sleep is still a mess. You don’t like to be alone, that’s for sure! You will often wake us up screaming for mom or dad, or we will wake up to you just climbing into our bed with your Pikachu or your giraffie and your blankie. Some nights you sleep like a pro, others you won’t. You still nap during the day,usually an hour is good for you to go until about 10 or 11pm that night. You are definitely an early riser, often up by 7 unless you made it to our bed – where you sleep like a log.

Your favorite show is Paw Patrol, but you still enjoy your Bubble Guppies as well. You love watching the most random YouTube videos as well. You have an imagination like I haven’t seen before – you can pretend play like no other. 

You always want to be like your brother or your Daddy. You had to go to the dentist recently where you insisted that you had a loose tooth, like your brother. You are always thinking of him – wanting to get him a toy or a piece of candy anytime that you do. You also enjoy being like your Daddy. You will look for your tools to “fix things” just like Dad. You even use your tools to “fix” me, cutting with your saw and repairing and then giving shots telling me “this won’t hurt”, and listening to my heart – “sounds good!” I think you’ve heard those things a time or two before.

Your dimple little smile seems to get all kinds of attention, and your Mohawk suits your personality. You started school this past year and you LOVED it, getting to take you r ‘packpack’ like brother and learning in the classroom setting. The independence suited you, I’m interested to see how this next year of a full day Pre K goes for you! 

You are down to handfuls of meds, most important being the anti rejection meds that you will take every 12 hours, for the rest of your life. If you don’t take those about 12 hours apart your immune system becomes less suppressed and that can be dangerous for your foreign heart. We are still working on your bone density as well, and will continue with infusions.

Overall, we are so incredibly blessed to be where we are today. We realize living in a hospital was no way to live, and it especially showed when you quit talking to us for a couple of months while inpatient. This second chance at life is nothing short of a blessing, and we are thankful for your donor, day in and day out. It was by far the most selfless and most precious gift you will ever receive. We pray for the donor family nightly as we know their loss was tremendous, and yet despite their pain they did something so courageous.

We know that transplant starts down the ticking ‘clock’ if you will, but that doesn’t stop us from taking advantage of every moment we’ve got. From pig piling on each other in the living room, playing hide and go seek, jumping through the sprinkler or just watching a movie together – we have learned the importance of time well spent, and we will continue to do so. We will continue to love deeply and always, all while holding the donor family close. 

Because every day when we look at you we remember, you are nothing short of a walking miracle. 

God is good!