Transplant Clinic Day 9/12/16

Today was Emma's monthly transplant clinic day. She hadn't gone to sleep until after midnight so it was hard to wake up early. But we got up bright and early and got ready to go. We put wet/heat packs on her arms in preparation for her blood draw and drew up her 8am meds so we would have them ready. Then we headed to the hospital to check in.

Her blood draw was first. As soon as the phlebotomist put on the blue gloves Emma lost it. The whole thing was traumatizing as usual. She hates the whole experience, not just the poke. The first poke didn't go so well, but it did draw a tiny bit of blood. They were able to get the rest with the second poke which was good considering how hard of a stick she can be. 

Then we checked in for echo and clinic. Since we have to get the blood draw first because of timing and drug levels, she's always traumatized about everything else that happens after the blood draw. So she wasn't happy about echo. She eventually settled down and watched Mickey Mouse after she realized the echo didn't hurt her.  Then it was time for ekg, blood pressure, pulse ox, weight, and height. Emma wanted none of it! She kept signing "all done" and pushing things away from her. Poor baby has had enough, and isn't old enough to understand that all these tests are helping her stay healthy. 

Next we met with a transplant nurse coordinator, transplant pharmacist, and then the transplant Doctor.

Emma's BNP is higher than it should be, which could indicate some heart failure or rejection. But it wasn't high enough to be alarming, it's just something to be monitored. The doctor said that her heart function is not as good as it should be for someone her age. Her blood pressure was also high, so they'll be monitoring that as well. Because of this they'll be doing a cath in January, rather than waiting until Spring like they talked about last month. It's scary to think that something could be wrong, but we are thankful that it's nothing emergent at this time, and we are continuing to trust God with Emma's life. He knew the plan for her life before she was ever born! 

Some good news is that Emma only has two more weeks of her pulmonary hypertension medication and then she will be done with that! One more med down!! We were comparing her current med list of 10 medications and 3 med times to her med list when she first left the hospital of 24 medications and 8 med times and wondering when we ever slept or how we kept up with washing that many syringes!! But more than that, it's just a reminder of how amazing it is that she's alive! 

We are in the process of transitioning to two med times, which is exciting! It will mean no more midnight meds! So she'll get her transplant meds at 9am and 9am, and two other meds at 3pm.

Because the med times changed, she will have to get another blood draw next week to check drug levels, but hopefully it will go smoothly. 

On the way home we stopped to get Chick Fil A. It's Emma's favorite restaurant, so it's becoming our tradition to go there on our way home from the hospital, so she can get a special treat. :) Her favorite part was pushing the rolling highchair back and forth from the table, and dropping little pieces of food between the holes in the table. But she also enjoyed the food! ;)

The drive home went well until the last couple hours when she was just done with being in the car! This picture was taken during one of our stops when she just needed to get out and stretch and look out the window! 

Thank you for your prayers! We would appreciate continued prayers for Emma's health, specifically her heart function and blood pressure. 

Blessings to you all!

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.

Journey to Transplant: Part 1

Seeing the pictures come up on facebook from “on this day last year” sure bring back a lot of difficult memories. Emma went through her first round of major medical challenges right after she was born, with two heart surgeries and a long hospital stay. But we got to go home six weeks later, and although it was extremely difficult having her home, and being constantly on edge with her medical condition, we were so happy that she was home.  Things were hard at home, but we knew it just had become our new normal. Seven med times a day, continuous feeds through her feeding tube which caused her to throw up frequently throughout the day, vital checks every few hours and sometimes constant oxygen saturation monitoring. Emma refused anything by mouth and feeding had become such an issue that it was time for her to get a gtube. We had fought it for awhile, in hopes that she would start eating by mouth. But her oral aversions seemed to be getting worse rather than better. The NG tube made Emma miserable and caused her to gag and retch everyday. We hated seeing her miserable and we knew she needed to start keeping her feeds down so she could gain weight for her next open heart surgery.  She had already needed another hospitalization because of vomiting and dehydration. So her gtube surgery was scheduled for September 2^nd 2015. This was the beginning of her second round of major challenges and worsening heart failure.

Even though Emma’s heart was failing and she was throwing up all the time, she tried so hard to be a happy baby. She has always had the biggest smile, even in the midst of her worst heart failure. The night before her gtube surgery was no exception. My mom and I went up to Spokane the day before and got Emma settled in the Ronald McDonald House. Mickey had to work but he came up later that night. I remember how happy Emma seemed. I put her on the bed and she stretched out and had a big smile on her face! I laid down next to her and tried to facetime Mickey but the internet wasn’t working, so we took selfies to send him instead. Emma was in such a good mood and she still had that smile.    

                                       

That night we stopped Emma’s formula fortifier and gave her regular breastmilk through the night, then early in the morning we stopped that and gave her plain pedialyte, then a few hours later she couldn’t have anything until after surgery. It really didn’t bother her that much, because she didn’t understand the feeling of hunger yet. So we took her to the surgery center and after awhile, we went back to a pre-op room and got her prepped for surgery. It was a lot harder letting her go into surgery than I anticipated. The first two surgeries she had were emergency surgeries and the third was planned but was still a part of her first hospital stay. So at that point we were just desperately trying to keep her alive. This was different because it was an elective surgery, but still had it’s risks as with any surgery. We said goodbye to our little baby with an NG tube. This was supposed to be a straightforward procedure with no complications, and it was, for the most part…

Surgery was straightforward as excepted. But when we went to see Emma in recovery, I about lost it. She was crying and whimpering in pain, and just looked miserable. I couldn’t handle it and I started crying. I immediately felt horrible that we had just put her through this. Even though it was a recommendation from her doctors and Mickey and I were trying to make the best possible decision for Emma, I still felt horrible. Her recovery was rough. She didn’t want to be touched at all. Anytime anyone touched her, she just cried out in pain. I didn’t hold her for awhile. I don’t even remember how long, but she just didn’t want to be touched or moved at all. She was in so much pain that they kept increasing her pain meds. I remember a couple of days into her recovery, the ICU doctor, nurses, and therapists were all in her room talking about alternative ways to comfort her because they couldn’t keep increasing her pain meds. So they ended up having me hold her in an effort to comfort her. I think it did help some to have the comfort of mommy. But I just remember sitting there and wondering what was going on, why she wasn’t recovering as quickly as other kids, and when we would see her smile again. It was hard. But slowly they got her weaned off a lot of the pain meds and a few days later we were headed home. She was still really swollen when we left and required strong pain meds around the clock, but the doctors didn’t seem concerned. We went home on a Saturday (four days after surgery) and things didn’t improve…

To be continued...