Back in Orlando

   On Valentine's Day in Michigan we had an official meeting with Dr. Green after he met with a handful of other doctors involved in Emma's case. He talked about a few possible surgery options for Emma. One included using part of her esophagus to cover the fistulas in her trachea. Another option he gave us was to do nothing, and fly home with her, hoping the fistulas would continue to heal and close on their own over time. Michael and I talked after the meeting and decided that going back to Orlando (and the original hospital to the NICU) was the best option. I was so excited and hopeful to bring Emma to Michigan for the big 3D splint surgery, but I was not excited at all about the idea of another surgery that had never been performed before. Emma was the 16th person to get the 3D splints, but the only one to get fistulas and have her trachea tear while the splints were sewn in. The fact that going back to Orlando was even an option made us feel better about the situation and we flew back the following week after her chest tube and pericardial drain were taken out.  She also had several X-rays taken within the 48 hours before we left to make sure there was no new air accumulating in her chest.

With Doctor Green the day before we left, and two of Emma's primary nurses (below), Bridget and Courtney.

   On Wednesday, February 21st Michael flew home early in the morning and Emma and I were picked up at 12:30pm. I was excited to be able to fly with her in the medical jet this time. She did well on the flight and only needed to be suctioned twice and get a diaper change while the plane was descending. She was very sweaty in the ambulance due to being in her "spaceship" during transport, but I was able to wipe her off and the MedWay people helping us opened the top so she could get better airflow to her already normally warm body.

   She was on an Avea CareFusion ventilator in Michigan, and a small Zoll (?) ventilator during transport. She did well on both. However, once she was switched to the Servo Maquet she began breathing really hard and looked like she was gasping for breath. She remained so sweaty, as someone would be after running a marathon. One of the doctors at Winnie Palmer asked and assumed that this was her normal breathing style. I immediately told him no and Michael and I began to worry. Everyone said it was probably just hard for her on the flight, even though I kept watching her heart rate on the plane and it stayed between 120-140 most of the time. On this ventilator her heart rate stayed up at 190! The next day we thought things would be better, but nothing had changed. They assured us that the vent settings were the same as the vent settings in Michigan. We could see that was true, but obviously something was different. Michael used the example of buying Charmin Quilted toilet paper vs the Dollar Tree brand. They do the same job, but one just feels better. Several of the staff believed it was a sedation issue, and upped her meds (Morphine and Versed). Michael and I knew that was not the issue, and it did not make a difference.
    Michael went back to the hospital that night while I stayed home. It was too hard for me to see her like that (I couldn't stay calm while I worried about our baby dying), and when Michael came home several hours later he explained to me how hard of a time she was having. Her heart rate could get down to 135 while she was sleeping, but her breathing was still so strained. I cried so hard, praying over and over, "Please help her! Please help the baby!" The next morning I texted one of the other moms we met in Michigan whose son also has dwarfism and I asked what kind of vent he does well on. There are two home vents- the Trilogy (usually recommended) and the LTV. She told me that her son did not do well on the Trilogy, but does well on the LTV. Michael and I went in on Friday morning and begged another doctor to switch Emma to the LTV, and to use the pediatric tubing rather than the neonatal (smaller) tubing they currently had her on. An hour later, at Noon, after 43 hours of struggling to breathe (I said thank you prayers that she wasn't passing out), she was switched to the LTV and within a minute we had our happy baby back. She stopped sweating and looked around at us with her regular comfortable face, rather than looking to us for help like she had been prior. I started crying again then from happiness. As difficult as this has been so far for all of us, it is definitely keeping our faith strong.

These photos are from the end of February after doing better on the LTV ventilator.

  We had a meeting on Thursdsay with several of the staff at Winnie Palmer and are shooting to finally get Emma home in May. She still needs her meds weaned off (Morphine, Versed, Dexmed, Valium, Methadone, Seraquel) and then they need to sew up her current stomach hole where the prolapse is, and put in another G-tube. We made sure that everyone knows that, per Doctor Green, Emma's fistulas do not have to be closed before she comes home.