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.