As I've mentioned before, Katelyn had a heart murmur that was discovered at her first Doctor appointment. She was referred to a cardiologist who did an EEG. The Dr. couldn't tell if the murmur was "normal," so plans were made to do a sedated echocardiogram when she was older.
Katelyn's sedated echo was scheduled for 4/15. The plan was to give her some Chloral Hydrate, which is an oral sedative. When they administered it, the nurse said she'd be sleepy within 5 minutes. Instead, within 5 minutes she began getting very agitated and started fighting us as we held her. She was screaming and crying and wasn't the least bit sleepy. This continued for at least 45 minutes before we were able to get her to sleep (by putting her in her carseat and swinging it). Ultimately she woke up before they could do the test. They tried to do it while she was awake, but stopped after just a couple minutes. Plans were made to try again in early May.
After thinking about it, we decided to try a different form of sedation, since it was pretty likely that she'd have the same reaction to the Chloral Hydrate a 2nd time. IV sedation was the next step.
We took Katelyn to Sparrow on 5/21 for the IV sedation. We arrived at 8 am for a 10 am procedure. There was a lot of waiting around, and they finally came @ 9:30ish to put her IV in. They couldn't find a vein in her arms or hands, so they placed it in her foot. I'm actually glad they did, she mostly seemed to forget about it and didn't play with it!
Katelyn's sedated echo was scheduled for 4/15. The plan was to give her some Chloral Hydrate, which is an oral sedative. When they administered it, the nurse said she'd be sleepy within 5 minutes. Instead, within 5 minutes she began getting very agitated and started fighting us as we held her. She was screaming and crying and wasn't the least bit sleepy. This continued for at least 45 minutes before we were able to get her to sleep (by putting her in her carseat and swinging it). Ultimately she woke up before they could do the test. They tried to do it while she was awake, but stopped after just a couple minutes. Plans were made to try again in early May.
After thinking about it, we decided to try a different form of sedation, since it was pretty likely that she'd have the same reaction to the Chloral Hydrate a 2nd time. IV sedation was the next step.
We took Katelyn to Sparrow on 5/21 for the IV sedation. We arrived at 8 am for a 10 am procedure. There was a lot of waiting around, and they finally came @ 9:30ish to put her IV in. They couldn't find a vein in her arms or hands, so they placed it in her foot. I'm actually glad they did, she mostly seemed to forget about it and didn't play with it!
After some delay, they finally started her procedure around 11:30. About 2 minutes in, the attending Dr. (not a cardiologist, he is currently a Pediatric Nephrologist, but was a Pediatric Intensive Care Physician for many, many years) said to the technician, "Do you see that goober right there?" My heart sank, and it only got worse from there!
Long story short, he told us that there was a mass on her Tricuspid Valve, but he wasn't sure what it was. He gave us a list of questions for her cardiologist, which included:
1) Tumor?
2) Clot or tissue?
3) Billowing valve?
1) Will it grow?
2) Will it break off?
3) What if it does?
1) Attached to valve or Chodae Tendineae?
He mentioned that there were pretty much 2 options when something like this happens, open heart surgery, or just monitor it and see what it does.
Needless to say, we left that appointment quite upset and scared. I was so worried about our sweet little girl!
They told us to expect results in 2-3 days. On Thursday I couldn't stand it any longer, so I called the Dr. to see if there was any news. The nurse (not one of my favorite people) said, "Good news! Her echo came back normal!" I was like, "What do you mean, normal?" She said, "Her heart function is normal." I said, "What about the mass that they found on her Tricuspid Valve?" "Oh, it doesn't say anything about that. I'll have the Dr. review it again and get back with you some time next week."
Ugh. I was SO UPSET. Ultimately, I took my sister's advice and called her pediatrician. They were able to contact a different Dr. at the same practice who looked it over. According to his findings, it isn't a mass on her valve, but she has a "Unique Variation of the Tricuspid Valve." I have no idea what this means, and I'm waiting for a call back from the Dr. to ask more. All we know for now is that they want to check it again in a year. I'm planning to get a second opinion, but first I have to talk to the Dr. who looked at this echo.
Thanks to all of you who have had Katelyn (and us) in your prayers. We really appreciate the support of our friends and family. If you wouldn't mind, please keep her in your prayers. Hopefully this is the good news it appears to be!
Long story short, he told us that there was a mass on her Tricuspid Valve, but he wasn't sure what it was. He gave us a list of questions for her cardiologist, which included:
1) Tumor?
2) Clot or tissue?
3) Billowing valve?
1) Will it grow?
2) Will it break off?
3) What if it does?
1) Attached to valve or Chodae Tendineae?
He mentioned that there were pretty much 2 options when something like this happens, open heart surgery, or just monitor it and see what it does.
Needless to say, we left that appointment quite upset and scared. I was so worried about our sweet little girl!
They told us to expect results in 2-3 days. On Thursday I couldn't stand it any longer, so I called the Dr. to see if there was any news. The nurse (not one of my favorite people) said, "Good news! Her echo came back normal!" I was like, "What do you mean, normal?" She said, "Her heart function is normal." I said, "What about the mass that they found on her Tricuspid Valve?" "Oh, it doesn't say anything about that. I'll have the Dr. review it again and get back with you some time next week."
Ugh. I was SO UPSET. Ultimately, I took my sister's advice and called her pediatrician. They were able to contact a different Dr. at the same practice who looked it over. According to his findings, it isn't a mass on her valve, but she has a "Unique Variation of the Tricuspid Valve." I have no idea what this means, and I'm waiting for a call back from the Dr. to ask more. All we know for now is that they want to check it again in a year. I'm planning to get a second opinion, but first I have to talk to the Dr. who looked at this echo.
Thanks to all of you who have had Katelyn (and us) in your prayers. We really appreciate the support of our friends and family. If you wouldn't mind, please keep her in your prayers. Hopefully this is the good news it appears to be!