Monday, May 20, 2019

       This afternoon all of the specialist came in to get consents and go over their procedures. Tomorrow Olivia will be having the following: Mri of her brain, Bronchoscopy, lymphangiogram and Mri and cardiac cath. The nurse practitioner who works with Dr. Dori gave me the above diagram when she explained the total procedure. I'll try my best to rely the message.
      So tomorrow at 8am ET, they will access three sites to get to Olivia's lymphatic system. Two areas are in her groin area and one is in her liver. They will inject contrast into these sites and track where it goes from there. Ideally, it should travel up through the cistern chyli all the way to her neck by the innominate vein within the contained green line. If she has lymph leakage, the contrast would then leak out and create a cloud like appearance in her chest. Best case scenario would be they see larger sized vessels of lymph that they could go in and coil off by her lungs. Worst case would be that there is diffuse vessels that are too small to coil. This would mean that they would then access her lymphatic system by the cistern chyli and use "super glue" to close off all flow upward from her lower extremities. This would cause her to have lymph fluid that would pool in her belly and then have to be absorbed from there. They went over what to expect and the list of complications is quite long. They include: ascites, perforated bowel, ileus, pain, high fever, trouble managing BP, bleeding and bruising.
      Anes came to discuss Olivia's history and forewarned us that this procedure can be extremely long. Brett was here for some of his description and it was not for the faint of heart. Depending on how long the procedure is and how much her airway tolerates, they may or may not extubate her right away. She will be on antibiotics for at least 24 hours with close blood pressure control in the cicu. She will have an arterial line for lab collects and BP monitoring along with a Foley catheter because she is potty trained.
     They did explain that due to the increased pressure in her belly from this procedure they may look at her liver to also make sure she doesn't have any signs of ple during this procedure which we would then discuss what to do with the doctor.
     Tonight, we are focusing on taking it one hurdle at a time. Olivia has to have an Iv started with a type and screen drawn tonight. She has to remain npo after 10pm. She doesn't understand the weight of tomorrow which we are very lucky for at this point because Brett and I have enough worrying to do. Brett is getting her dinner (McDonald's) per her request and she just finished an appetizer of a popsicle.

We will do our best to keep everyone up to date on all the info we can.


Olivia loves to hear her mommy/daddy read your comments!