June 11, 2019

We’re happy to report that we have been having very uneventful days! We are on day 21 here in the hospital and Bo‘s ANCs are still at 0, which means we will be here for 1-2 more weeks while we wait for them to reach 200 so we can head home for a bit. Last round we went home on day 25, however this round of chemo was shorter than last but the dosage was much stronger, so it makes sense that it’s taking his body longer to bounce back!

Many of you have asked what our day to day life in the hospital looks like, so we thought we’d take this opportunity to share!

Most mornings Bo is up around 6:30/7am. A nurse comes in to check vitals around 8am. Vitals consist of temperature, blood pressure, pulse, oxygen levels, and listening to his heart. They take vitals every 4 hours around the clock!

Bo eats breakfast and we wait for a visit from our care team for rounds sometime between 9 and 10am. The team typically includes whichever oncologist is on call (this week it’s Bo’s actual doctor), our nurse case manager, our social worker, and a pharmacist. They chat with us about any new developments in his daily blood work or treatments (like if he’ll need a transfusion that day, etc.). We also get a short visit from someone from the IV team who checks on the dressing around the central line in his chest. This dressing gets changed once a week and takes about 30 minutes. Bo has been so sweet and compliant for dressing changes and will withstand most things if he can watch Baby Einstein while it happens 🙂

After rounds, Bo typically takes a nap. Once he wakes, we play. This is our longest stretch of time to fill in the day as Bo can really only play in 2 places in our small 12×14 room–on our bed (it’s a little smaller than a full size bed) or in his crib. He’s not able to be on the floor, which is a bit challenging considering he’s an active boy who’s wanting to walk and climb and do everything normal 10 month old boys do! We have a few toys and an iPad, but we also spend time looking out the window and chatting up our amazing nurses who come in regularly to check on Bo’s vitals.

This is also when Naomi and my parents typically visit. They come several times a week and Bo screams for joy when he sees Naomi walk up to the door! Lance and I make sure to get one-on-one time with Naomi so we try to take her out somewhere or walk around the hospital together. It’s been so sweet to see how Naomi and Bo’s sibling bond has not weakened by this time spent apart. He loves her SO much and it makes his entire day to see her.

After a visit or play time, Bo takes another nap and then we wait for Lance to come back after working so we can eat dinner together! We typically play some more or lately have been watching the NBA Finals! Bo gets ready for bed around 8 and has a final set of vitals checked before he falls asleep.

As you can see, our days are fairly mundane, but feel full and busy. The hardest part is keeping Bo entertained in such a small space. Luckily, he has a joy that is contagious and he makes it feel more than tolerable to spend multiple weeks in a tiny room.

Thank you for walking this journey with us. We are grateful to share a glimpse into our day to day life with you and hope that it makes you feel more connected to Bo and our family, especially those loving and praying for us from far away!

Below are some pictures of our room so you can get a feel for what our “apartment in the city” (as we affectionately call it) looks like!

The entrance to our room
Positive pressure double door system to keep germs out
Our bed and bathroom door (far right)
Bo’s crib
Sweet Bo
Playing on the bed!
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One thought on “June 11, 2019

  1. Lord Jesus, I pray and believe in your miracle touch upon little Boaz. Pour your glory on him, Naomi, mom, dad, Julie, Randy and the hands of his medical team. Visit him with comfort, let faith rise from his family, provide the finances for medical and travel expenses in Jesus name! Amen

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