Today was a pretty chill day in our room here at St. Jude. Inpatient stays are pretty boring. It feels like a big adventure just to walk downstairs to the cafe. I try to make myself get out of the room a bit because otherwise you just go crazy.
The day started with Caleb waking up saying he was hungry. This was a great sign! He ordered pancakes, scrambled eggs, and sausage. He didn’t eat a ton but he did enjoy a couple bites of everything and I was happy to see him eating! We also FaceTimed Grandma and Tyler. Tyler and Caleb really miss each other and it was so sweet to see them talk to each other over FaceTime!
Our day pretty much consisted of playing on the iPad, watching movies, and playing with some of the new toys that Caleb got for Christmas. We also took a couple trips to the playroom so Caleb could get out of the room for a bit. James and I switched watching Caleb so that we could each get a break for a bit. I went to the gym for a run and James took a trip back to our apartment to do some laundry and get some extra clothes for us. In between all of this the nurse comes in to give Caleb his doses of his regular meds plus all of his anti-nausea medications. We have found that Benadryl makes him very irritable, not sleepy like you would think. And that Ativan makes him act silly which I also wouldn’t think would be the normal reaction. He gets each of those every 8 hours, so there are some parts of the day that are a little more difficult than others when it comes to entertaining him. On top of all of those meds he is on 24 hour hydration and gets several doses of Mesna, a drug that prevents the chemo from damaging his bladder by coating it and protecting it. It’s a complicated science of all these medications, but the St. Jude nurses have it down!
Honestly one of the toughest parts of taking care of Caleb at the moment is keeping him from getting tangled up in his tubes. He is connected to the pump 24 hours a day. Every time he moves we have to push the pump with him and make sure it doesn’t get pulled or kinked or stepped on. He definitely keeps me on my toes!
And another funny picture… this is the barf bag we put next to his bed just in case… he decided to play with it and put it on his arm like a sleeve. You’re doing it wrong Caleb! HA HA!!!
Caleb’s appetite was pretty good today. He didn’t eat a ton at any one meal, but he ate pretty regularly throughout the day. We were playing imaginary “ice cream shop” and his nurse came in and asked if he would like some real ice cream. She ordered him some and I think this was probably his favorite snack of the day!
Grandma and Bruce have been taking care of Tyler and I’m so thankful they are here to help during our inpatient stay. I miss Tyler so much but I know that he has so much fun with Grandma and Bruce! Today they took him to the Children’s Museum here. We hadn’t had a chance to check it out yet so today was his first time there and he had a blast!
After that they went to dinner and then brought Tyler to St. Jude so he could visit. I think it was good for him to see Caleb, and see that he is ok. Tyler could see that he was hooked up to his medicine, but also see that he was still able to get up and play and eat. Tyler was amused that Caleb had his own bathroom here. The child life specialist gave Caleb markers to draw on the windows, so the boys did that together. They had so much fun and Tyler wrote out his name and Caleb’s name! Tyler’s visit ended with the “happy cart” stopping by the room. This is the first time we had seen this. They bring toys around to the kids and let them pick a toy from the cart to keep. Tyler and Caleb were SO excited! They looked at all the goodies and Caleb chose a Hulk toy and Tyler chose two surprise bags that were little Spiderman action figures. My heart was so full watching them play together. I’m so proud of Tyler for how he is handling all of this.
At 6pm Caleb got his dose of chemo for the day, which was Cyclophosphamide. This one is on a 1 hour drip. He will receive one more dose of this tomorrow. We will then stay for 24 more hours of hydration and observation and then we should be able to go home Saturday afternoon. Caleb doesn’t know anything is different when the chemo drip is on. He was sitting up eating pizza and playing with Tyler during that one hour. So far we didn’t see any changes in Caleb before bed. Some of the effects of the chemo are not immediate though. It can take 7-10 days for some kids to get sick and levels to drop very low. So, we aren’t getting ahead of ourselves but so far we are very thankful that he hasn’t gotten immediately sick.
There are some serious things that can happen though, and one of the most common side effects is mouth sores. These are very painful so to try to prevent that from happening we brush his teeth twice a day and also swab the inside of his mouth with a mouthwash. He HATES the mouthwash so in some ways that part of our day is even harder than him getting the chemo! His toothbrush has to be thrown away every day. They take the mouth care very seriously!
Another thing they take seriously is risk of infection, and we found out today first hand the lengths they go to to prevent it. Earlier this afternoon, the nurse came in to do Caleb’s vitals, flush his line, etc. Then she hooked him back up to his hydration. She left the room and Caleb got up to play. I went to throw something away and when I turned back around one of Caleb’s tubes (he has 3) was laying on the ground dripping the hydration fluid. I am not sure if it wasn’t on all the way or if he stepped on it. I called the nurse right away. Just in the short time that the tube was open to the air there is a risk of infection. She called in a team of nurses to immediately stop the drip, discard the bag of fluid, change out all the tubes he had connected to him, and replace everything with brand new supplies. This is how serious they take things here and I am thankful that they are so cautious and not willing to take any chances when it comes to Caleb’s health. They also ran some blood work just to make sure he didn’t need any extra antibiotics, but everything came back clean.
Tomorrow will be more of the same as today… waiting around for all the different meds and the chemo dose. Hopefully the time will pass quickly. I can’t wait to get home and sleep in my own bed. The hospital “bed” (AKA pull out couch) is only comfy for so long. But at the same time I wouldn’t want to be anywhere else than by his side. Right now he is sleeping soundly. The nurse came in a few minutes ago to take his vitals and said he looks like a little angel when he sleeps, and he totally does. I am off to bed so I can be there for him any time he needs me. More updates tomorrow!
My guess, as a nurse who worked on an oncology ward 30 years ago, is that you and your positive attitude are making the staff’s life easier. It sounds like a perfect place to work; truly patient- and family-centered. I see you accentuating the positive and funny, and acknowledging the potential challenges. I am thoroughly enjoying your heart-felt blog. You all have my admiration and prayers.
You are all in my prayers..constantly. God Bless you and your entire family and give you peace.
Thank you for the update. 🙏🏽