What Our Days Look Like

So, many people are probably wondering what a day to day looks like for us here at CHLA. We’ve been here for 5 days now, and I feel like we’ve practically moved in. I’ve already unpacked my suitcase and put stuff into drawers. Here’s a view of our room at night. That’s the fold out bed in the back.

There is only 1 bed in the room, so every night one of us goes home (Pasadena) to sleep, then back to the hospital in the morning. Lately it’s been me staying at the hospital. (I don’t think I would sleep well at home without my baby there anyways). The hospital provides bedsheets, pillows, blankets, towels, etc. so there isn’t much we need to bring from home. The bed is surprisingly comfortable. We have a full bathroom with shower too. The one thing the hospital doesn’t provide is a fridge! Unless you’re kosher (we considered going kosher for a few weeks so we could get a fridge… ?)

Shift change happens at 7:00 am and 7:00 pm, so that’s when things are the busiest. Nurses or care partners come in every 4 hours to take his vitals. (Yep, in the middle of the night too) and Adam pretty much sleeps through all of that ?, as do I.

Everyone has been asking me whether I get enough sleep, and the honest answer is, for most nights I haven’t had to wake up in the middle of the night because the nurses here are AMAZING – they take his vitals as quietly as possible, change his diaper every 2 hours so I don’t have to wake up, and Adam doesn’t typically feed at night. So the short answer is, yes, I think I’m getting a decent amount of sleep ?

6:00 am Adam is weighed and his girth is measured to see if his abdomen is getting smaller.

7:00 am-8:00 am  Wake up and eat breakfast (yes, pizza counts as bfast!)

 

10:00 am-11:00 am Doctors round and stop by to discuss the plan for the day with us regarding Adam’s treatment and care

12:00 pm-1:00 pm Lunch, unless Adam has any other procedure scheduled. His vitals are always taken at this time too.

(This is not a food blog, I promise…)

5:00 pm We give Adam a bath, change his bedsheets, and put a new gown on him. Because of his central line, it’s important that we bathe him every night (sponge bath, no submerging in water), to prevent any possible infections. Here’s our clean little boy right after his bath. He still loves those IV wires.

6:00 pm Blood draws are done every 12 hours to see if he needs any transfusions for the night.

Throughout the day we have docs and nurses coming in and out of the room all day, giving us updates on Adam’s condition, his lab results, possible meds or infusions we may need to give him. LOTS of decisions that we have to make on a day to day and sometimes hourly basis. We pay close attention to Adam’s mood, which is always an indicator of how he’s doing and feeling, to see whether he needs any pain meds. Making sure Adam is comfortable is of utmost importance right now. We change his diapers at least every 2 hours because the chemo medication can burn his bum bum and diaper rashes can happen easily. We also change his diapers with gloves on. We feed him almost every hour. Since he can’t eat much at a time because his stomach is squished, we feed him less quantity but more frequently. Adam drinks breastmilk by bottle, but as of yesterday he has not been eating well so we may need to insert a feeding tube tomorrow ?

For the most part, Adam sleeps a LOT these days because he’s on a lot of meds. When he’s sleeping, Mark and I take turns going out for a short walk. I do my Starbucks coffee run any chance I get (decaf americano with cream and sugar ?). But when Adam’s awake, we enjoy some play time with him which includes singing to him, reading to him, holding him, talking to him, playing with toys, and making silly faces to get him to laugh and smile (Dad is better at this than Mom).

A lot of people have asked how they can practically help and whether they can bring us food. Yes! A dear friend of ours has set up a meal sign-up for people to help bring us food everyday. Meals are either home cooked or ordered from a local restaurant and delivered to the hospital. This has been unbelievably helpful to us. We may be posting up the meal sign-up to this blog soon for others who would like to sign up, once we’ve figured out the extent of Adam’s hospitalization.

For those who don’t know and are wondering about my work situation, I work for the County of Los Angeles Public Works Department as a project manager/civil engineer. I am currently on FMLA leave from work and my bosses and coworkers have been beyond understanding and are so supportive of my situation. I am eternally grateful for that.

Please please do continue to pray for us. Even though we cannot respond to each of you individually, know that your prayers and thoughts have been such a supply to us. And even though Adam has had some good moments, we expect there will also be bad days, where we will need more of the Lord’s abundant supply of grace.