Surgery Update

No surgery today! When Lee and I got to the NICU this morning, we met with Mary - one of the cardiologist. She said that they hadn't talked to Neurology yet - so Elle was bumped from the surgery line today. Lee left for work and shortly afterward Neurology came to visit Elle. It's actually really funny when the doctors come to visit - because it's not just one or two of them - it's a herd. Usually it is a group of young doctors following around an older doctor. You can definitely tell who is in charge! I met with the same Neurologist that Lee and I met with last week. They asked how Elle was doing and if she had made any progress since the last time they came by. I told them that she had started to open her eyes and was moving her arms a lot more and she has started to hang onto her wires - we've had to stop her a few times from pulling out her feeding tube and from pulling off her heart monitors. Dr. Fernandez, the main man in charge, proceeded to check Elle's reflexes. He tapped on her little legs and arms to see what her reaction was. She did not like ANY of it! She got so mad - opened her eyes and started to silently scream in frustration. Little tears were forming on the sides of her eyes - it was pitiful! He woke her up! All the neurologist were loving every minute of it - I don't know how many times the entire herd crowded around her bed and were smiling over our little one. They were so pleased with the way she reacted - pretty much like a "normal" baby would react. Their only concern from the exam this morning is her leg reaction. She doesn't quite have the same reaction in her feet and legs as she does in her arms. She keeps her legs tucked up to her belly - pretty much the same way she did in utero. They measured her head and it is average - average is good! Dr. Fernandez then told me that pretty much everything appears to be the same since their last exam - they are pleased she has started to wake up. As far as the seizures and posturing - they still feel that while the MRI showed bleeding in her ventricles and the EEG showed abnormal tendencies - neither the MRI nor the EEG show what appear to be epileptic tendencies. They will want to follow her progress though because there could be developmental issues but it is just too early to tell. After their exam, Neurology once again gave their ok for Elle to have surgery. I asked when PT and OT could get involved and our new cardiologist, Dr. Crystal, said that once her incision heals from the BT Shunt being put it - he would be more than happy to get PT and OT involved in her development. He also told me to stay on top of requests like that because doctors have tunnel vision - they each only focus on their area of expertise and have a tendency to forget about the other areas - like PT and OT. Mary, the cardiologist also gave us more of a definite answer on the PIC line and the surgery. Elle will have the Interventional (IR) PIC (peripherally inserted central catheter) put in tomorrow sometime. They will take her down to Radiology, a CV Anesthesiologist will sedate her, and a Interventional radiologist will insert the PIC. The line will be inserted into one of her veins with the help of a Fluoroscopy (like an x-ray for the veins that is continuous so the Radiologist can follow the vein - it is the same type of machine they use for upper GI's). Once the PIC is put in place, they will be able to remove the IV that is in her bellybutton. She will begin getting her PGE to help her heart pump, her supped up Gatorade filled with nutrients and lipids (fats) all through the new line. The nurses will also be able to draw blood from this line so they won't have to stick little Elle in her heels for blood samples. Right now, Elle is also scheduled to have surgery on Thursday. They don't have a definite time yet - but according to Mary - Thursday is the day. While I was talking with Dr. Crystal about what neurology saw and Elle's procedure he asked if I had a background in medicine. I laughed and told him no - it is actually in employment law and human resources. Many thanks to all our nurse friends that keep us asking all the right questions that it would lead our doctor to ask if I had a background in medicine!