Moving forward— Mid April update

​We are officially one month out from surgery #2 in Chicago for removal/reconstruction! 

As of lately Rocco is doing wonderful. Things got pretty scary for a minute, but since having the exposed forehead expander removed, he’s bounced right back to his playful, happy self. Honestly, it’s been ME who’s been having a hard time shaking everything off. I will say, I am starting to feel better about things each day. I keep telling myself to move forward. We got this.

Since Rocco’s accident with the expander, we’ve decided to keep him at home with a sitter instead of sending him to the ELC. I get a little sad thinking about him missing his interactions with all the many people he loves there, but I know it’s the best choice for him right now. Once he is healed after this next surgery in May, he will go back. In the meantime, keeping him home with a loving, trusted babysitter is the safest choice. He is loving the one on one attention and thriving. 

After Rocco’s procedure to remove the exposed forehead expander, he finished the Cefdinir antibiotic he was on. The surgical team in Chicago put him on a maintenance dose of another antibiotic (Bactrim) prophylactically to cover him and protect the scalp expander from any sort of infection. He’ll stay on this maintenance dose until the next surgery in May. I’ve started giving him all the yogurt and cottage cheese he can eat and sprinkling some probiotics in his food/drinks to help reduce any potential gut issues from all the meds. We’ve also been sure to keep him in the shade and with sunscreen on when we go outside because our pharmacist warned me this medication can make his skin more sensitive to the sun. He’s been doing well on them so far. 

Since Rocco’s forehead expander was removed, we’ve done 2 fills! He’s officially at 167cc in his scalp expander with 3 (or possibly more) fills until his surgery. He’s been doing the fills like a champ with minimal to no tears. It’s incredible. He’s such a brave boy. 

For me, for whatever reason, I get a visceral reaction when doing the fills. Right as I start prepping the supplies, I start sweating, get a little shaky, and my stomach feels like it’s in knots. But, I push through it and get it done. When I’m filling, I paying close attention to the suture line on his scalp, along with the increasing feel of firmness of the expander itself, the capillary refill (which can be hard to gauge because of his hair), and of course Rocco’s reaction. 

Since Dr. Raj put new sutures in his scalp incision, we’ve been vigilant to keep the incision super clean and free of crust/scabbing. In the bathtub each night, we’ve been using a small piece of gauze or a wash cloth and ever so gently washing the incision line with baby shampoo and water. I don’t put anything on it after. I plan on trimming his hair as it grows to keep hair off of it too. It’s starting to stretch a little with each expansion. 

A question I had recently for Dr. Bauer and his team was about the port from Rocco’s forehead expander that was left behind when the forehead expander was removed. The port for his forehead expander was always positioned behind and above his right ear. Definitely a tricky spot to get to. His ports were purposely put in “good” skin because it would have been extremely difficult to locate a port in Rocco’s thick and lumpy nevus. However, as Rocco’s scalp expander increases in size, I feel like the port is so close to it. I was worried about the port puncturing the expander or something. Both Susan and Dr. Bauer reassured me that the port is not a concern. Susan said it could even slide under the expander and not be an issue. But, with everything that’s happened, I’m paranoid. 

Between keeping him home, the prophylactic antibiotics, the increased attention to everything during the fills, and extra emphasis on keeping the incision clean, I pray we’re doing enough and taking all the necessary measures to continue with a successful round of tissue expansion. 

In other news, Rocco had his follow up with his awesome dermatologist and got a clean bill of health! We see her every 3 months and she is the best. I feel like we are constantly working to get Rocco’s severe itchiness under control. We’ve been giving him Zyrtec in the evening to combat this itchiness. It’s hard to tell if this is helping or not. In addition to this, we put Eucrisa ointment on his Nevus every morning and night, we use Happy Cappy Shampoo to help with flakiness, and we were using Ketoconazole medicated shampoo 2x a week, but recently stopped because of the new incisions. 

Rocco’s dermatologist wants us to start using Triamcinolone ointment 2x a week on the rugae portions of his nevus, which we started this weekend. She also wants us to try Hypochlorous Acid spray, which I plan on trying once I get the “okay” from Dr. Bauer that he’s good with us using it. I feel for Rocky with how itchy, hot, and uncomfortable his nevus is. When my doubts and fears about all the surgeries get loud, I remind myself of how much more comfortable he’s going to be. 

This past week we have been in planning mode prepping and planning for our trip back to Chicago in May. We plan to stay at the same AirBnB we stayed at previously. It was a perfect location and the owners were so sweet. They allowed us to keep a few items there so we don’t need to trek them back and forth. If we can swing it, I would love to stay at this AirBnB each time we come for surgery. I feel safe and comfortable, it’s clean, cozy, and we’ve met and talked to the tenants who live in the unit below. 

We plan to stay less days this time around. We fly out on Monday, May 18 for surgery on Wednesday, May 20 and then return home on Monday, May 25 for a total of 7 nights. I’ve been told that recovery is usually a little easier for the removal/reconstruction surgery. For this trip, my mom and uncle Jim will come with me and Rocco. Papi will come and relieve Uncle Jim on Thursday. Mike will stay home from his work travel that week in order to stay with Mikey. The last thing I need to get is the rental car. Once I get that, we’ll be all set. 

In terms of recovery, the plan is hopefully to have Rocco’s drains removed in Chicago, on Friday (2 days post op). If that can’t happen, I’ve talked with both Dr. Raj and Rocco’s pediatrician who said they could take the drains out for us if need be. I could technically also do it myself at home, but I’d rather not. Dr Raj also said he could take the sutures out of Rocco’s scalp post removal/reconstruction surgery when they are ready to be taken out. 

Despite all that happened earlier this month, I do feel like it’s been a blessing to have Dr. Raj and our Chicago team connected. I feel so better knowing that we have someone locally who can be another resource for us and can collaborate with Dr. Bauer/Dr. Alkureishi when needed. 

As always, we are so appreciative of every prayer, every text/call checking in on us, every donation on Rocco’s GoFundMe, and everyone who is rooting for Rocco. Our boy is doing great. Keep moving forward. We got this. 

Love,

Jenny