Elizabeth Archives - Day 31

Dear Friends and Family,
Since Matt is back at work, this email will be a little less medically savvy, but I trust God knows and can interpret the details, so please pray with as much specificity as you can gather from below. (I've put some explanations in italics which you can skip if you need to save time)

Unfortunately, they were not able to save Elizabeth's PICC line. While they did manage to get another peripheral IV in her foot, this is not sufficient for the necessary fluids, medications, and blood draws. As a result they've decided to put in a more "long term" option, called a Broviac. A Broviac catheter is a temporary line placed in a vein. (in this case, it'll go into her upper right chest) It is used to draw blood and administer medications, fluids, and blood products. The advantage to this type of catheter is that it can fully replace all the PICC Lines, Peripheral IVs and Fem Lines that we've had so much trouble finding, and keeping free of infection. It is typically more stable than the alternatives and has a lower risk of infection and clotting off. This is something that Elizabeth should be able to keep as long as she needs it (weeks or months) even if she comes home.

In addition, and perhaps a reason that they've decided to take the plunge on the Broviac, The surgeons have decided that her chest tube drainage is still too much and is not sufficiently decreasing, so tomorrow at noon, they will do surgery to address it. While "in there" they will do 2 things -

They will tie off the thoracic duct (the possible source of some of the drainage) and then they will do a Pleurodesis. Pleurodesis is a procedure that causes the membranes around the lung to stick together and prevents the buildup of fluid in the space between the membranes. This procedure is done in cases of severe recurrent pleural effusion (also called Chylothorax - or what we've been referring to as "chest tube drainage"), to prevent the re-accumulation of fluid. In pleurodesis, an irritant (such as Bleomycin, Tetracycline, or talc powder) is instilled inside the space between the pleura (the two layers of tissue lining the lungs) in order to create inflammation which tacks the two pleura together. This procedure thereby obliterates the space between the pleura and prevents the re-accumulation of fluid.

Since she is going to have to be on anesthesia, she will be re-intubated (given a breathing tube) and while they're there, they also want to give her a blood transfusion that she's been needing for a few days.

Finally, they've decided that her feeding is not progressing fast enough, so they are going to insert a "G-Tube" (a feeding tube directly into her stomach). While it seems like a miserable solution to me as her mother, since we've already started "oral feeds" she can continue those and just get supplemental nutrition from the G-tube. This avoids another round of NG tube induced vomiting, as well as takes the pressure off us to try to get her to eat more at every feeding. We can use the feeding times as opportunities to bond with and nurture our baby and not stress out about every CC, knowing she'll get what she needs. The G-tube can also "go home with her" so that's a plus.

Matt and I have mixed feelings...we're relieved that "something is happening", but weary of our daughter undergoing yet more procedures. The bottom line is, the sooner that she gets the drainage stopped and can get on "full feeds" (even if it's a combo of oral and g-tube feeds) the sooner she can come home and we can deal with all the rest of the issues from here.

Praise God for a wonderful cardiologist who is warm and caring and took great time to explain all the details to me (since my regular translator has a day-job now) :( Praise God for my sister-in law who is here keeping me company through the days in matt's absence...we'll get through this.

Please pray as you feel led. We want Elizabeth to come home as soon as possible. We want God to heal her. We want her to not feel anymore pain. Her little body needs a break. We need hope and strength and grace for all that lies ahead.

Thank you for walking through this with us,
Love,
Sara (for both of us)