Consult Day

When they did Emma's bronchoscopy and CT scan last Tuesday, they saw that she has malacia (floppy airway) in the lower bronchi that they cannot reach to fix and that she will still need to be on a ventilator when she finally comes home. While we are here Dr. Green will put 3D splints in to keep Emma's trachea and main bronchi stems open. They also saw that she has what could be pneumonia in her secretions in that area since they are stuck there and not able to be moved due to the collapsing airway. Some secretions are normally able to be moved with cupping or by patting the baby or child firmly on the back, but due to Emma's weak and fractured ribs, they can't do that. On Tuesday evening they started her on antibiotics and sent a culture testing the secretions. It came back negative for pneumonia and showed that it was just a staph infection. She has stayed on antibiotics (Augmentin) for one week for that.

Wednesday (December 13th) was our third day at Mott Children's Hospital in Ann Arbor, Michigan. We had all sorts of doctors, nurse practitioners, attendings, and therapists coming in to meet us and examine our baby girl. Emma had an echocardiogram done at 11am and they confirmed that she was not showing a VSD (ventricular septal defect) in her heart. Hooray for good news! They did see that she has two veins that dump blood into the heart, while people normally only have one, but the cardiologist told us that her having two is perfectly fine.  We were told about how Emma might need a VEPTR (vertical expandable prosthetic titanium rib) because her rib cage is very small and they are not sure how much it will grow over the years. They have to make sure her ribs grow so her lungs can develop properly. It was just something mentioned for us to think about in the future, but makes us sad to think about her needing another surgery! 

I was pleasantly surprised to see so many different doctors coming in because I thought we were just here for her airway. Occupational therapy and physical therapy came in too, as well as music therapy later in the week. They also had the Child Life guy (Joel) come in and he gave us a developmental toy and four books that we could read to Emma. He gave us a Hope Beads sheet that has check off boxes for us to keep track of each time Emma meets one of the challenges such as getting a shot, IV, a blood draw, having surgery, etc. Each "activity" earns a colorful bead. She already has 8 check marks for different things, so before we go home, they will give us a necklace to represent everything Emma went though here! I love that idea. Joel also has a therapy dog, Denver, and he came in on Friday, but Emma was asleep. He said they will come back another day so she can pet him! 

This day Emma had 3 X-rays done. One was skeletal for the orthopedic doctor to look at her hips, spine, and arm bones. I don't think we have heard back from that woman yet.. Two of the X-rays were to check if her NJ tube was placed correctly. An NJ tube is similar to an NG tube, but instead of it being placed in the stomach, it goes straight into the intestines. I will explain that next, but the reason she needed that tube was because the G-tube in her stomach still had a lot of prolapsed gastric mucosa. That means the G-tube hole was stretching and when Emma had gas, air would push out from her stomach, pushing part of her stomach out of the opening! She had this sutured in Orlando on December 1st because it had happened before, but it stretched out again, poor baby. The gastroenterologist here in Michigan took the G-tube out and attached a Hollister bag over the opening that could vent the stomach and drain any fluid out. Emma's stomach has always been distended, but it is even a little bit more now with the higher ventilator settings (which she needs). Since they took her G-tube out, they had to put the NJ tube in for her to get her feeds. She has been on EleCare hypoallergenic formula since November 21st and on continuous feeds since November 29th. That is helping a lot and her pain while having gas and stooling has seemed to decrease. We told the nurses that Emma likes holding on to her feeding tubes and has a history of pulling them out, so they had to bridal (tie and clamp) the NJ tube around her nasal bone. We were told today that it can take up to three months for a G-tube site to heal before they connect it again, so I don't think they will fix it while we are here. 

In the evening the eye doctor came in to check Emma's eyes because since her cardiac arrest on the day we got here, her eyes have been shaking back and forth quickly (maybe 40% of the time). They called it a horizontal pendular nystagmus (eye jiggle). When the nurse would shine a light in her eyes that usually helped Emma focus and they would stop shaking, but we had to tell everyone that it was not normal for her. The optometrist warned us, "I have to shine a really bright light to look in the back of her eye. Most babies hate this, so she will probably start crying." Emma began snoring! Her night time medicines had kicked in and since she was sleeping so well, her eyes were not responding normally, so he had to come back the next day when she was on less medicine. The test came back fine and they did not detect any other problems. A few of the doctors wanted to get an MRI done to check Emma's brain activity, but other than the eye concern she seems really great and even happier and more awake than before, (probably because of the higher ventilator settings). Since they saw that we were not too concerned, they have pushed the MRI idea aside for now. They may still want one before we go back to Orlando in February. 

Last night Dr. Green came to talk to us and answer any questions we had, even though it was his day off and his daughter had graduated during the day. He mentioned that Emma's right upper lobe of her lung does not move air. We had heard the respiratory therapists in Orlando mention that several times. Dr. Green said it might be something that eventually needs to be removed, but Michael and I will have to get more information about that. He said they might even remove it (if they need to) while she is in the OR for her 3D splint surgery. He is not sure if her airway will heal itself over the next three years while the splints are in, or if she will need another (more permanent) airway surgery after the splints slowly dissolve. He told us that she has scoliosis, but it does not seem like too much of an issue right now. He did bring up the rib extenders again, and then he answered some questions about what to expect after the airway surgery. Dr. Green said she will have one or two chest tubes to help drain fluid and that the first four days after surgery are the hardest/most "dicey". Emma will remain sedated for a few days to help with the healing. He said she will probably keep the same vent settings during that time, then slowly start weening down. After two weeks post-op we should be "in the clear". We are saying lots of prayers and staying pretty positive. Emma has been smiling and laughing at some point every day while we have been here, either at herself in the mirror, or at us and the nurses. That is definitely making things easier on everyone and helping us enjoy this cold winter!