Journey to Transplant: Part 2

These memories can be difficult to write and I’m sure difficult to read for some. I’m not writing this to rehash painful memories. I’m writing it because I wasn’t able to last year. While we were going through this, the emotions were absolutely crippling and our undivided attention was on Emma. There was hardly ever time to write, and when there was time, the emotions were overwhelming. But I also want to write it because as I look back I see so many answered prayers and how God had His hand on Emma every step of the way.

After we brought Emma home from her gtube surgery. It seemed like things were going okay, she was just having a more difficult recovery from most. She was still swollen and in a lot of pain. So we were keeping her on pain meds around the clock. But we had to start reducing the stronger pain meds, because we were only given a small amount to get her through the worst of the pain. But then things got really got bad when we started reducing those pain meds. We were trying to wean them as instructed, but it felt like she just wouldn’t stop screaming in pain. So we tried to fill in the gaps with Tylenol, but that didn’t do much good. I remember at night waking up every hour to her screaming. Mickey and I weren’t getting any sleep. We were on the phone with the doctors every day. Emma’s sats were dropping and her weight was increasing (she was swelling). Her doctors thought that she was gaining really good weight because she finally had the gtube! But because her sats were dropping, they did have us slightly increase her diuretics.

As time went on things just kept getting a little bit worse. I remember on that Wednesday night (September 9^th) her oxygen saturations kept dropping into the 60’s (normally they were 70s-80s). We called the on call cardiologist and were told that she was fine as long as they were just dipping into the 60s but then coming back up. If they stayed in the 60s we were to put her on oxygen and take her in. Mickey and I were utterly exhausted at this point. We hadn’t had a decent nights sleep since before her gtube surgery. This night was just brutal. We had her hooked up to her pulse ox machine and it just kept alarming all night long. But her sats always recovered. So we never had to put her on oxygen. In addition to the alarm constantly going off, Emma was waking up every hour screaming in pain. We were staying on top of the Tylenol and ibuprofen, but that’s all we could do. We gave her the last dose of oxycodone. Earlier in the day we had scheduled an appt with the surgeon for the next day, because he didn’t understand why she was still in so much pain from the surgery.

So we got up Thursday morning and started getting ready to head to Spokane. Mickey was loading the car, while I pumped and watched Emma. She wouldn’t stop screaming. We put her in the car and hooked up the pulse ox. We kept her hooked up to her pulse ox monitor continuously at this point. Her sats were consistently staying in the low 60s so we pulled over and had to get her on oxygen. This was the first time we ever had to do this, so it was extremely scary. We talked about taking her to the ER in Lewiston, but we were told to just keep her on oxygen and get her to Spokane. Being on oxygen helped for a little bit, and we were able to make it up the hill. But then her sats started dropping again. Mickey and I knew we weren’t going to make it to Spokane and after Pullman and Colfax there are no more ER’s to stop at. So we made the decision to go to the Pullman ER and called them to let them know we were on our way. They called an ambulance to come meet us on the road. By the time the ambulance arrived, Emma’s sats were in the 40’s. She was crashing fast.

By the time they got us to the ER, my sister, who is a nurse, had called them to update them on Emma’s health history. Also the ER doctor on duty at the Pullman ER had called Sacred Heart to talk to them about Emma’s health history. It just so happened that the ER doctor on duty was the wife of the PICU intensivist on duty at Sacred Heart that day. So they were communicating about Emma and talking with her cardiologists as well. The MedStar helicopter was on the way. So when we got to the ER, they did an evaluation and worked to get her stabilized to fly. They did a chest xray which showed that she had fluid on her lungs. They couldn’t get an IV in her, so they had to do an IO because she was crashing. So they drilled two holes in her leg and got the IO in. It didn’t even bother her because she was unresponsive. It started to hurt her later as she started waking up again. It wasn’t too much longer before they had her ready to fly in the helicopter, but it felt like forever. Only one of us could fly with Emma, so Mickey drove and I flew. But I had to sit in the front seat, so I wasn’t able to see Emma. I was scared to death that she wouldn’t make it through the flight. I had no idea what was going on back there. The flight was beautiful, but it was hard to focus on the scenery when I was worried about my baby. The pilot was pointing out how close we were and I couldn’t hear him. I finally realized my headphones weren’t plugged in. So after that I was able to hear that things were going okay.

We arrived and Emma was taken directly to the ICU, and it seems like the ICU intensivist and the cardiologist immediately began evaluating her. It seemed that the major problem was her lungs, because they had so much fluid on them. So the first goal was to work to get all the extra fluid off her. Emma became much more alert than she had been earlier in the day, and her sats were stable so she didn’t need to be intubated. Out of the blue, she seemed to have a strong desire to suck, which she hadn’t had before. So she sucked on a pacifier and a bottle for the first time in weeks! We were so amazed at how well she was doing!

Just when it seemed like things were going well, she started having episodes where her heart rate would increase to the 200’s and then rapidly drop into the 60’s. Several people were monitoring her, but this went on for a couple of hours. Everytime when her heart rate when up, she would make a high pitched type gasp. Then after a couple hours, the heart rate dropped to the 60s again and continued to quickly drop…50s, 40s, 30s… Emma’s eyes rolled back in her head and Mickey and I were absolutely terrified. The nurse called for help, several people ran in the room, and Mickey and I stepped out. They started doing CPR and we were led to a family lounge. We didn’t think Emma was going to make it. We were crying and praying that she would be okay. Then the charge nurse came in and told us “we got her back.” We were absolutely overwhelmed with relief!! Praise God she was still alive! But then we realized just how close she had just come to death. For the nurse to say “they got her back” means that they thought they lost her, even if just for a moment.  

This was just the beginning of a new season with Emma…an extremely difficult season full of heartbreak, fear, and faith, but also one of tremendous blessing that ultimately led to a heart transplant.