I was able to get Emerlynn into the dermatology department at the Phoenix Children’s Hospital on Friday morning. I called Tuesday afternoon, and they got her in right away, which is great that we could get in that quickly. They have a vascular anomalies clinic within the dermatology department, so I knew that they’d know what to do for Emmy’s hemangiomas.
We arrived in Phoenix (well, Glendale) Thursday late afternoon and stayed with my Uncle Don and Aunt Tricia. My sweet mom came with me to help with the kiddoes in the car. I brought Logan along because he gets sad when he doesn’t have his mama to put him to bed. Easton and Teagan stayed with Grandma Patti so they wouldn’t miss school. The kids were really good on the drive up, which was an answer to prayers, because I was worried that Emmy would cry for a good portion of the drive. But she didn’t. And Logan was entertained with the DVD player and a sucker when he did start whining to get out of the car, which luckily wasn’t until we hit Wickenburg. We got to my uncle’s around 6 pm, and Logan had fun playing with Kaylee and Julia and their dog Harley for the rest of the night.
Our appointment was at 8 am with a 7:30 check-in time, so nice and early. Right when we arrived in the waiting area, there were other children there with problems of their own. There was a little baby with a hemangioma on her eye and a girl around the age of 8 that looked like she had alopecia. Is it weird that I was happy to be around these sweet children? Immediately, I felt like we were all friends. Nobody was staring at Emmy’s face. We were just amongst other people that were dealing with the same sort of things, and it felt good. There was no judgment because we all knew what if felt like to have our children stared at. It was really the most comfortable I have ever felt being out with Emerlynn, and I could have stayed there all day and developed friendships with all of these people and their children.
As soon as Dr. McConnell came into the room, he said, “Oh, we love hemangiomas here. Because we know how to help them.” I explained to him that I was having a hard time getting any help or answers for Emmy in Vegas and was referred to the Vascular Birthmark Foundation by a friend in London. Through the foundation, I was able to find their services in Phoenix. I think everybody was surprised that I couldn’t find anyone in Vegas to tell me anything about Emerlynn. And after our appointment, I realized that whatever I was told by the two dermatologists I did see in Vegas was wrong anyway.
From my own reading and researching I was worried that Emmy had internal hemangiomas since she has so many on her body. I tried to get her on propranolol to stop the growth, but I couldn’t get a prescription for it from the doctors here because they didn’t know enough about it. I’m glad they wouldn’t prescribe it without knowing anything about it. The last dermatologist I saw here, Dr. Handler, called me the day after Emmy’s appointment and said, “If Emmy were my child, I would take her out of state to see a specialist.” I am really glad that he called me and said that because that’s what made me call the Phoenix clinic to get Emerlynn seen.
Anyway, as soon as Dr. McConnell and I started talking, he said that we immediately needed to start propranolol. He was worried that she might have them on her liver as well, so he said, “I want to get an ultrasound today, would that be ok? Then I’ll feel okay with you driving back to Vegas knowing that everything is ok.” Of course it was ok. Of course I would love to get Emerlynn everything she needed in just one visit.
The first dermatologist I saw told me that the hemangioma on Emmy’s face was involuting when I took her in at 4 weeks old. It had developed a black scab on it, and the information I had read so far made me think that it was ulcerating. But when the dermatologist looked at it, she said, “Oh no, it’s just involuting (going away).” Dr. McConnell said, “No, if it starts turning black and scabbing, it’s ulcerating.” So for about 7-8 weeks, Emmy has had this ulcer that should have been dressed daily, but I didn’t know that because the woman I saw said it was “just nature’s way of getting rid of itself.” I wish she had said, “I’m not sure, I don’t see this often” instead of being so certain that she knew what it was doing. All this time she’s had this untreated ulcer on her face that causes her pain whenever she touches or bumps it, and it could have been gone by now. Dr. Handler also saw it and apparently didn’t know that it needed to be treated because he didn’t say anything about it.
Dr. McConnell measured Emmy’s cheek and leg hemangiomas and explained that her cheek protrudes because the one on her face is a deep hemangioma and goes way down in her cheek. The one on her leg is just a surface hemangioma. But without the propranolol, the one on her face would just keep growing. And if there were any internally, they could keep growing too. If they get too big, it can cause heart failure because the heart is working harder to pump blood to those areas. And when they ulcerate, they cause pain and high chances of scarring or infection if left untreated.
Dr. McConnell also brought in his boss, Dr. Price, and she examined Emmy too and talked to me a little bit more about treatment. These two doctors were amazing and knowledgeable and so good with Emmy. They had their nurse teach me how to dress the ulcer, which has to be done daily until it’s gone. They also took photos of Emmy to monitor her progress and use in reports or whatever they needed. They ordered the ultrasound for an hour later and asked me to wait around afterwards so that they could get the results. I also found out that the laser treatments Emmy is supposed to start next week with Dr. Handler were a definite no because a hemangioma is not supposed to be lasered before it’s stopped growing. It can cause scarring and improper healing if it is lasered prematurely. I wish Dr. Handler knew that. He was about to start messing with my daughter’s face. So grateful for a team of experts that steered us in the right direction. We’ll return monthly to monitor Emmy’s progress. I couldn’t be more pleased with the treatment we received and how thorough they were with everything.
The ultrasound lasted an hour. The tech was very thorough. Everyone was so helpful and made sure results were back and everything was done as quickly as possible since they knew we had driven all the way from Vegas and needed to head home. Dr. McConnell called me about 2 hours later to tell me that Emmy has five small hemangiomas on her liver and that he was relieved about the fact that they were small and felt fine with letting us go back to Vegas. The propranolol will stop the hemangiomas both on her body and internally from getting any bigger. And now maybe this ulcer on her face will go away soon since I know what to do for it.
Overall, it was an amazing experience, and I am so so grateful for doors that were opened and prayers that were answered so that we could get Emmy the attention she needs.
One more interesting thing – there’s a theory that hemangiomas can be caused from a lack of oxygen. When I got the results back from the pathology report on my calcified placenta, the dr. told me that the placenta had a lack of oxygen that caused the calcification and also made it so Emmy wasn’t getting enough oxygen. So maybe that’s a cause of all these hemangiomas? Either way, I couldn’t have prevented it, but it’s interesting that the two can be linked together.
