21st of December Surgery Information

Thank you for all of the feedback from our last post! We can feel the love from all of you. From dinners, care packages, heartfelt notes and texts. We really can't thank you enough!

Josephine is scheduled for a surgery on Monday December 21st at Seattle Children's Hospital to have a central line placed. More specifically a Broviac catheter. This will be connected to her Inter Jugular Vein (IJV), then tunnel through the breast tissue shown in the image below.

 

This catheter will make Josephine's treatments go more smoothly.  The Enzyme Replacement Treatment (ERT) will take place every other week. Infant veins are very fragile and are generally hard to find. Over time, if we didn't have the Broviac Catheter, we would have to switch to different injection sites all over her body so that we would not wear her veins out. The risk of blowing veins out or even missing a vein would cause more unnecessary problems. We will not have to insert an IV for each treatment, instead we will be able to connect to the catheter in a quick and painless manner.

In order for this to be inserted, JoJo will have to be placed under anesthesia. There is risk to this procedure given JoJo's health and her heart's abnormal function, but many children with similar circumstances go through similar routine procedures without any problems. Tony and I have prayed and discussed these risks and we are confident we are making the right decision for JoJo. 

Following the procedure, we will be admitted for 24 hour observation. During that observation we are hoping we will be able to start treatment!! This is great news and it is one step closer to getting JoJo's body to break down the glycogen built up in her heart.  The first few treatments will not yield immediate results, but over the course of a few months, the doctors expect to see her heart return to normal size. Other results will include more energy and added help to build muscles.  We can't wait to see JoJo get the extra boost from enzyme treatment so we can start working on developing her motor skills.

We will post an update after surgery on Monday! Thoughts and prayers are welcome and appreciated.

With Love,
Seguras