Yesterday, Sept. 11, 2018, Isla had her 2nd VEPTR placed rib-to-rib, on her left side.
We started out the day with a 4:45am wake up and arrived at Children's Hospital of Philadelphia for a 5:45am check in. Isla was "first case" for her team of surgeons. We are thankful she did not have to wait all day for surgery to begin.
 |
| Waiting for our ride to the hospital...Isla was so confused, yet woke really happy! |
 |
| sights walking into CHOP |
 |
| Isla heard Cookie Monster's voice in the waiting room...always brings her to giggles! |
As soon as we entered the Pre-op room, Isla was very clinging to us and pretty scared. A good insight in that, is that she wanted us as her comfort and protection - we are so grateful for the bond and attachment that has formed. She was trusting us!
At 7:45am she was in the operating room and the teams were ready to prep her for the big surgery.
Isla had IVs placed, a PICC line placed, x-rays taken, and more prior to being opened up for her surgery. Once the prep was all complete, Dr. Anari, Dr. Nance, and a Fellow started the surgery.
Dr. Anari told us that Isla is so complex, They took their time to decide a course of action for surgery once they had her opened up and could examine the fusion of her ribs firsthand. Her doctor said her fusion - where the ribs meet her vertebrae, in her back - was so thick and so hard... like concrete.
He had to use a smaller VEPTR than originally planned due to needing to attach the VEPTR on a rib lower than he originally wanted to. This may mean that she will have to have a VEPTR revision (changing out the rod) quicker than the other rod placed on her right side. They did an amazing job and were able to place this VEPTR close to where they wanted. Isla did so great during surgery and her vitals stayed steady. Like usual, they explain how intense the surgery is. Always breaks our hearts. Isla handled the surgery like a champion. Brave strong girl! We praise the Lord for keeping her safe through the surgery and keeping her STRONG!
Surgery was completed around 12:30pm and we were able to meet to talk with Dr. Anari about the surgery at 12:45pm.
It was amazing to see how much Isla has grown since her last surgery in May...
May: 21lbs 12oz, & 28"
Sept: 23 lbs 13oz. & 29.25"
The doctors were so thrilled with that growth! Yay, Isla! You grow, girl!
Our goal is to keep as much weight on her as possible, and help her gain as much as she can.
this current VEPTR they placed, has a little less coverage of muscle, fats, and skin than her other side. So, they would like to see more weight on her.
We met with Dr. Anari right as he came out of the operating room. He told us all that happened in surgery, his thoughts on future, and also gave us a 3D printed replica of Isla's ribs and vertebrae. It is almost true to size. It is incredible to see!
 |
| front view |
 |
| back view |
This 3D printed model is from her CT scan from December done prior to her VEPTRs going in. They used this to visualize and decide where they will cut through the ribs and where they hope to attach the VEPTR rods. The top half of the 3D printing is her thoracic spine vertebrae. For a healthy spine, there would be 12 vertebrae in a row. Isla's is a solid group of fused and malformed vertebrae - one solid mass of bone. Isla's surgeon's hope, is that the VEPTRs placed on both sides of Isla will not only help to open her fused ribs to create space in hopes that her lungs would grow new tissue to support her body as it grows, but also, to force her fused spine vertebrae to grow in length. There are a lot of unknowns with this, even the doctors really are unsure, so we take it all one step at a time and Dr. Anari said he wants to help Isla will whatever problems arise. He is committed to doing his best to help her. We are so thankful! Each trip out here, we are reminded of our first doctor visits with Isla. The prognosis from those doctors was hopeless. And then we see where God has brought us; From hopeless to H O P E.
Soon after talking to her surgeon, we were brought to the PICU and waited for them to have Isla ready in her room.
The wait through surgery is tough. But, those last minutes of waiting to be near her are so difficult!
We were so very thankful when we got to be with our little love.
Soon after talking to her surgeon, we were brought to the PICU and waited for them to have Isla ready in her room.
The wait through surgery is tough. But, those last minutes of waiting to be near her are so difficult!
We were so very thankful when we got to be with our little love.
The greatest difficulty in recovery is the intense pain that Isla feels from her surgery. The doctor said that if any adult had this surgery, they would be bed ridden for months and months...
Isla was mostly sleepy from anesthesia and from the narcotics. Even through that, she cried a lot and was searching for us. Oh, how it breaks our hearts to see our baby hurting! Right before bedtime, Isla woke up to tell Justin the sounds a monkey makes...it was so adorable and gave us such a sweet glimpse of our Isla's personality coming through, even on such a difficult day for her. What a sweetie!
Last night Isla had a bit of a rough night. Between pain, issues with IVs, her wound vac machine malfunctioning, needing a heart ultrasound due to her high heart beat, fever increasing...it was a busy night with many people in the room. Her heart rate continued to be high and she had a fever for quite a while. The teams of nurses and doctors were all consulting together to come up with the best course of action for her. They added a couple of meds, gave her extra fluids, and worked on any option to help her be able to relax. It felt like there had not been a good level of relaxed sleeping time for Isla up to this point. So, the main goal was getting her to a place of being calm and sleep.
By mid morning she was able to relax and had some sleep...we were so thankful!
When she woke up again, we offered her a tiny amount of Pedialyte and applesauce...and she ate it!
 |
| We've never been more thankful for an applesauce cup! :) |
 |
| Such a brave girl! we could tell her throat hurt from being intubated in surgery, so she cried each time she swallowed, yet she wanted more...Oh Isla...we love you! |
 |
| She continued to like us to be near - love |
 |
| Her incision on this side is again, starting on her neck, down her back, and around her side. |
 |
| So good to see her able to sleep peacefully |
Even with a high heart rate, Isla showed signs of strength and healing...so, she was able to move to the main surgical floor - out of PICU! Way to go, Isla!
This girl continually exudes bits of J O Y through the hard. Praise the Lord!
 |
| Such a sweetie pie...smiles through the pain |
Isla is sleeping...so we need to too! Thank you so much for the prayers, encouragement, and support! Please keep praying for Isla's recovery!
This comment has been removed by a blog administrator.
ReplyDelete