I’ve got a bit of time so I’m going to go ahead and post what happened leading up to everything that’s been going on with Skyler.
Skyler’s had a cold since Wednesday of last week. It didn’t seem very bad, just some moderate green snot, loss of appetite, and mild cough. We weren’t concerned. Over the weekend she still hadn’t gained her appetite back and got terribly fussy. She needed to be held nearly the entire weekend, which is not like her! She normally prefers not to be held and would rather play by herself with toys, or at least be laying by herself. Needless to say, I got nothing done around the house over the weekend, like the usual cleaning and laundry. She also had a lot of “pain” cries, and was grunting constantly with every breathe she took. Ronnie and I decided Sunday night that we should get her into her doc because she might have an ear infection. Lots of her symptoms pointed to that.
Monday afternoon we went to her doctor. She saw her and first thing noticed that she had lost a few ounces since her 4 month check-up. Not good for a baby that should be rapidly growing! They couldn’t see anything else wrong with her as far as her ears and how her chest sounded. But they could tell something wasn’t right so they sent us to a pediatrician at KU Med to make sure there wasn’t anything more serious going on than irritability from a cold. Thank God they did that! All the pediatrician docs and students and residents at KU Med were initially stumped, because nothing really stood out as a primary symptom of anything common. They finally decided to admit her to at least get a chest x-ray and some IV fluids because she was mostly dehydrated on top of anything else that might be wrong.
The chest x-ray revealed something wrong with either her heart or lungs. At that point, the pediatrician said it could be 1) enlarged heart, but he thought he could see the edge of her heart in the image and it was normal sized if that was indeed the edge of it, 2) Fluid surrounding her heart, or 3) Fluid surrounding her lung. Next step was a CT scan to see what exactly was going on in there, since there was obviously something. While we waited to get the CT scan done, the results of her blood draw came back. Oh by the way, it took 3 – 4 people about 7 times of stabbing our little girl to finally get one blood draw, and it wasn’t even that good. You don’t even want to know what that is like to sit through. They had trouble finding veins, and when they’d get one, it would collapse. She can thank me for the bad veins later because I’ve always had the same problems when getting blood drawn! So the results – all is good except for a very low platelet count. The doctor was highly concerned because with something going on her chest and this low platelet count, it could be a sign of cancer.
This was the lowest point I’ve ever experienced in my life. I’m a pretty faithful person and usually pretty trusting in God, but when the “c” word came out of the doctor’s mouth, my relationship with God got real rocky, real fast! But I kept praying and begging God for it to be anything but that. Cancer is so mysterious and there is never any sure thing. There was no way my perfect baby girl could have cancer. Those minutes or hours as we waited for the CT scan results were so dark. I cannot describe it any other way. If it’s possible to cuss at God I’m pretty sure I did it in my head. I begged and pleaded for a diagnosis that we and Skyler could handle.
Thankfully, the first thing the doc said about her CT scan results was that it was not cancer. However, it was in fact her heart that was enlarged. I think from the visual he gave us that it was probably about 50% larger than it should be. He couldn’t give us any more specifics without bringing a cardiologist in to do further testing to figure out the cause and possible solutions. They called in the cardiologist who then spent about an hour doing a sonogram on Skyler. We had to leave the room so she could focus. Another very long hour. It’s strange how I was amazingly relieved that Skyler had a heart problem and not cancer, but yet I didn’t even know how serious her heart problem could be. It just seemed more manageable than cancer.
Cardiologist said her heart is very sick. She explained the coarctation of the aorta but that because Skyler was crying through the sonogram, there were some angles of her heart she couldn’t see to tell how severe the coarctation was. She did explain there were surgical solutions depending on the severity, but that surgery was absolutely necessary immediately. She said Skyler would need to be sedated to do further imaging for her diagnosis, and at KU Med, they were not equipped to handle a baby with this heart condition, but that Children’s Mercy would take care of her better. They sent an ambulance for Skyler which Ronnie rode with her, and I headed over the CMH on my own.
So, that is how it happened. The heart surgeon on her case is supposed to be one of the best. He explained that Skyler is a text-book case of this condition, which means much for confidence in her surgery and recovery. We are so thankful now that this is what we are dealing with rather than so many other things, especially cancer. And we are confident in the team of people at CMH that is taking care of her. We just wish this waiting to come to an end so we can get her healed and back to the sweet, smiling baby that has stolen our hearts. I long for nothing more right now that to see her big smile and hear her adorable laugh again.
As of today, she is still holding strong. She slept wonderfully again last night until her 4 a.m. blood draw. She shares a monitor with the child in the room next door. Her stats are usually higher than the other child, but this morning while she was sleeping, hers were actually way lower and I wanted to cheer with pride! Not that I wish bad health on any other child at all, but I was just glad to know that Skyler didn’t have the worst heart rate on the floor!
Oh, and they redid Sky’s blood test here at CMH and her platelet levels came back fine!
5 responses to “The story”
[…] 32 weeks in utero with ultrasound technology. They had been watching her development closely due to Skyler’s history, a single-artery umbilical cord, and the fact that I am so fondly categorized as “advanced […]
[…] just amazed at how Skyler has grown and how amazing she is doing. I contrast that response with the grave diagnosis she had given Skyler just over three years ago in the middle of the night at KU Med. It still echos […]
[…] hard to believe two years ago today, we spent that fearful day at the hospital and found out about Skyler’s heart condition. It seems so much longer ago, especially when I watch her run around crazy every evening like a […]
[…] chose Children’s Miracle Network because they help fund children’s hospitals, and after Skyler’s experience, I’ll gladly help send money to help other children get and stay […]
[…] take more of sick/injured kids and trips to Childrens Mercy. I think I wore out my welcome there last year, and I just can hardly handle going back! Today I could hear the familiar tone of heart/blood […]