Grace in the Mess

Yesterday morning, we woke up as a WHOLE family to Kaleb sleeping beside us, Zion and River sleeping in till 7, and 6 inches of new snow on the ground. River and I (Brittany) made waffles for breakfast as the boys shoveled the snow off the driveway and Kaleb slept peacefully in our room.

Then River started throwing up. 🙈

And just like that, all our grand plans to get our house in order were laid aside as I (Brittany) spent most of the day holding our sad, sick girl and Todd spent most of the day heroically cleaning up the ever increasing pile of puked-on clothes and linens.

And yet, at the end of the day we can both attest that it was a wonderful day. There was so much grace to receive this new sickness with peace and even joy! We're grateful Kaleb is mostly better from the virus he had so he required minimal care and mainly slept in our room. We're grateful for Zion's cheerful attitude and ever increasing vocabulary. We're grateful for River's resilience and eagerness to play as soon as she started feeling better. We're grateful for the sunlight that streamed through our windows all afternoon. We're grateful for a dinner already made and delivered by a friend from church. We're grateful for the gift of a song sent to us, written by a friend (an unexpected, humbling gift that was a unique blessing to my heart). We're grateful for our cheerful housemate, Aubrey, who patiently and joyfully continued to hang out with us even while River was tossing her cookies. 😂

So far the rest of us remain healthy. We'll be praying it remains that way! We just wanted to let you know so you can join us in praying and praising God for his grace in the mess!

Kaleb Updates

While Kaleb was receiving care in the ACCU at Boston Children's last week, I was able to meet briefly with his pulmonologist to go over his CT scan from last month. She showed me a comparison between his CT and that of a normal one. Two key elements were evident:

1. His left lung is significantly depressed because of the size of his heart (the size isn't a concern right now to the cardiology team. They're expecting it to get to normal size as it retains more normal function and as the rest of Kaleb's body grows.). That's one reason he isn't getting the oxygen he needs.

2. On the normal CT, I could see lots of white lines where there were veins and tissue and then mostly a dark area where it was filled with air. On Kaleb's CT, his lungs were mostly gray where they're supposed to be dark. The pulmonology team doesn't know what is making them like that, but they're assuming that's the other reason he's not getting the oxygen he needs. They would like to do a lung biopsy to find out what those gray areas are. She told me there are very few other options to figure out what's going on.

So, looking ahead:

• Kaleb will most likely be having a lung biopsy in the near future

• Kaleb will also be going in to get a G-tube surgically placed in his abdomen (this is like a port in his abdomen that goes directly into his stomach) so that we can be done with the NG tube which we believe is causing a lot of his problems with gagging and spitting up.

More Grace

Though having Kaleb gone for so long (5 days) was confusing and sad, since we had just started getting used to having him home, God provided us many blessings through his stay:

• We were able to rest for multiple days and nights from the rigors of around-the-clock care for Kaleb

• We were able to go out for dinner and shopping with Zion and River one night (something that's much more complicated with Kaleb in tow)

• We were able to stock up on free medical supplies from our generous nurses

• I was able to tell one of the ER nurses about our church, and we were able to see many friends that we had gained during our previous stay in the ACCU, and thus build our relationships with them.

• I was able to have some really helpful conversations with my favorite ACCU attending physician, Shea, about how to care for Kaleb better and how best to advocate for him whenever we need to bring him in again in the future. We've learned that bringing him in to be seen by a doctor becomes much more of an ordeal when they're not already familiar with his crazy looking baseline.

• Shea also consolidated and rearranged Kaleb's med schedule so that I'm only administering meds three times a day instead of five and it is SO MUCH BETTER! I also found out I was giving him an extra feed at 6am, so now his schedule (and my day) doesn't start until 7am! These changes have made caring for Kaleb so much easier (thought still quite rigorous).

Blessed be the Lord,

who daily bears us up;

God is our salvation.

Psalm 68:19