grace led in life

 VEPTR Surgery #9

As I (Justin) sit here and think about that, Isla's ninth VEPTR surgery, it brings up a lot of emotions. I can't believe how much has happened in these few years since having Isla in our arms. We have seen countless miracles in Isla's story, many many things to thank God for. It is good for our hearts to recount those stories because this trip has been a marathon. We're feeling pretty run down. This is Isla's ninth VEPTR surgery and fourth 'bigger/more intense' surgery (2 rod placement surgeries, a rod replacement surgery last year and now this replacement surgery). Every other surgery consists of a rod lengthening usually consisting of at least one night in the hospital. But these 'Big' surgeries always come with other complications that make her hospital stays extra challenging and longer. This one so far is no different. Anyways, here is a recap of how these days have gone so far.

Surgery day was Monday. We had a 6am check in at the hospital. Surgery went really well. Isla's surgeon, Dr. Anari, accomplished everything he wanted to. He was very pleased with the outcome. We are so thankful! He replaced her original VEPTR on her right side with a longer one. To accomplish that, he needed to cut apart some of the very thick bone fusion between her ribs. He made 3 different horizontal cuts to open up her ribcage to allow for the new longer VEPTR. He was able to force apart those new openings to open up her ribcage vertically. He also pulled her mid rib block outward and sutured it to her Veptr to give more room inside her ribcage. So, now she has 2 VEPTRs with many notches that can be expanded. Lord willing, her next surgeries for a couple years will only have to be expansions. Dr. Anari said he only does Isla's specific type of surgery 1-2 times a year. The use of the VEPTR in kids is pretty rare. Even more rare is Isla's crab-like rib fusion presentation. If you have one of her shirts, you can kind of see what her bones look like from her back. Overall, surgery was a success. From the time Molly walked Isla back to the OR to the time we met her again in the PICU was about 5 and a half hours. 

I'm writing this on Thursday, Post-OP day 3. Thankfully, Isla graduated from the PICU after one night. Then we moved her down to her surgical floor where her Orthopedic team is. It's a lot quieter on this floor compared to the hustle and bustle of the PICU. Her team knows her well and seeing them all is really comforting. Her team is truly amazing. They all know Isla and look forward to seeing her. It's one thing that makes us smile when we stay at CHOP. 

These past couple days have been quite busy. Isla started off recovery fairly well. Her stats were all going in a good direction. But, we couldn't quite find the right balance of pain meds for her. Once the anesthesia wore off, she was in a lot of pain. This has continued till now. Also, she developed an ileus (her gut stops functioning) after surgery and it hasn't woken back up yet. She has been in agony with tummy pain. She is off all food/drink in order to let her gut rest. The ileus has been so hard on her and put her into some respiratory distress and high heartrate. It's hard to figure out the balance of all these things. Too many pain meds affect your gut and breathing. Not enough pain meds isn't really an option. So, it's been challenging to find a balance for her. She is still cycling in and out of pain/agony. So sad. Would you pray for Isla? Just today, she is needing to get back on different sensors to monitor her more closely. They have had to do a few procedures to try to lessen pressure in her stomach and GI tract. She can't eat or drink right now in order to give her stomach and gut some rest. She just relies on IV fluids for now. It is so tough on Isla not just physically but emotionally and mentally, too. 

Molly (our daily blogger) hasn't had much time to update. Ever since Isla woke up from surgery, Molly has been with her in bed about 95% of the time. She does an amazing job of comforting Isla. She put together another video of surgery day and post op day 1:

(CLICK HERE) Video of Isla's 9th VEPTR surgery day and post op day 1

Please pray for Isla. She truly is in agony with surgical pain and this ileus. Isla had an ileus during her last VEPTR revision surgery a year ago and her GI tract took 10 days to start working again. 
Thank you so much for praying for our little girl!