Slightly Overwhelmed...

Carter watching Yo Gabba Gabba

Dad and Carter avoiding the elements

This is Chester, our practice doll for Carter's home IV care

So today was a little overwhelming. To start off, Carter and Grammy had a tough night sleeping…or not sleeping. Another very restless night. We wish we could be on a better routine but we’re out of sorts here at the hospital. Carter is certainly not himself through these past few “chemo” days. He’s very uncomfortable and not really eating. Our doctor says Carter is doing well and the issues we see are very common. We spoke to him again about going home over the next couple of days, which would be great. Although we walked through some of the things we will be required to do as part of Carter’s ongoing care once we leave. First was a tour of the CHOC Clinics where we will spend a tremendous amount of time. Our new schedule will require, at a minimum, weekly visits for lab work and check-ups. Also, we typically will have a round of weekly outpatient chemotherapy and potential blood transfusions, if required. In addition, we’ll have inpatient hospital stays for one of the chemo drugs of up to 3 days long. Next is the daily care for Carter’s Broviac (central IV) which is intimidating. We will be required to flush this line on a daily basis, change the dressing and caps weekly. Because the end of this central line effectively sits inside the base of his heart, it is essential to keep this area clean and free of bacteria. This will require daily syringes, a VERY clean work station and a cooperative 22 month old. We both practiced on “Chester” as seen above. We were given a huge spectrum of all the things that can go wrong, whether they are very common or near impossible.

I am certain we will become very proficient with our new lives and schedule. Once we are home, we’ll throw these worries immediately out the window and focus on whatever it takes to make Carter’s treatment a success. It’s just been very nice to have a great staff at CHOC help us through this first week and a half. But watching Carter face this adversity has been inspiring to us and that is what will keep us focused on our goal of being cancer free!

Also, Dad gets back to CHOC! It was great for Dad to be back with Carter and helping out. It was very hard to be away for those few days but getting healthy was key. Maybe Bennett’s suggestion of making “get well cards” for each other really paid off!