My last post was very "happy-go-lucky." We have been so proud of little Charlotte and we need to remember to celebrate the her big accomplishments. A reason to celebrate was actually just what we needed last week, because aside from that we've been functioning in "heart parent" mode. We had a run of doctor's appointments that didn't exactly go the way we wanted. I haven't written about them here because I've been tired, a little anxious, and trying to wrap my head around things.
I'll break things down here for you by doctor/date...
Wednesday May 18 - 12 month well-visit with our brand new pediatrician. Our old pediatrician took an administrative position with the hospital, and while we wish him nothing but the best--it was sad to know that we had to find someone new. We have so many specialists that we really only go to a pediatrician for well-visits and shots, but we still loved Dr. Elliott and he knew all about Charlotte's special heart. SO, I'm sad to say that we moved on, but happy to say that we think our new doctor is great. Charlotte was just under 18 pounds that day (10%) and 27 inches long (3%)...while its not huge, she has held to her growth curve and not lost any ground.
Charlotte was getting a monster cold the day of our visit, and I will be honest, she looked like junk when we got her to the office. Her color was off, her breathing was heavy and she was a bear. Pair this with a new doctor...and we were about 10 minutes away from landing ourselves in the hospital. They gave her a neb in the office and I eventually convinced them to let us go home with a PROMISE that I would bring her back if she got any worse. We started an antibiotic for a red, bulging eardrum and some steroid for some wheezing and she was significantly better by morning.
Monday May 23rd - Pulmonologist, chest x-ray, blood work and cardiologist...WHAT A LONG DAY! Dr. Will (Pulm) said that Charlotte's ears still looked red after 5 days of antibiotics. In the end he referred us to ENT which I will talk about in a bit. We have the clear to stop her inhaled steroid in a month if she doesn't have any wheezing.
Blood draw = tears
Chest x-ray = tears
Next up was Dr. Sami (cardio). If you remember back to our last visit with him, we learned that Charlotte's chronically low oxygen levels were having a negative effect on her hemoglobin/hematocrit. Well, after that visit Charlotte really seemed to turn around. Her color looked better and she seemed a ton happier. She started eating better and just seemed NORMAL! I was sure that he was going to come into the room and tell me her labs were better. WRONG. Both of the blood levels were actually worse. Talk about feeling defeated. I was confused and I could see that he was both confused and concerned. Sami truly thinks that her heart repair is functioning the way that it should, but it still seems to be her lungs that are holding her back. Her chest x-ray this time around was essentially unchanged. Enlarged heart and increased vascular markings. BLAH. They decided to re-check in a month and then present her to Omaha.
Charlotte has always been a basket-case with doctors. She is getting so much better and actually let Dr. Sami hold her for the first time ever!
WELL...Mommy got antsy. Within 2 days we were cycling through another "crumby" phase with purple fingers and I hit my limit. Thank God Dr. Sami's nurse is a patient woman and has been so helpful to me. After lots of emails and texts back and forth, it was decided that Sami and Will would get back together and come up with a plan. So......Tuesday morning Charlotte will go in for a lung scan to see how well she is ventilating (air) and perfusing (blood) her lungs. From there we will come us with the next step. We also asked that Dr. Sami not wait to talk with Omaha. We want Dr. Hammel to know what is going on and to see if anyone else has any crazy ideas as to what might be going on. I won't lie...I'm nervous about all of this. We know that she has a crazy heart, but the last thing that we need to add into the mix are crazy lungs. Please say some extra big prayers for Miss Charlotte this weekend. We won't know results right away, but I will be sure to keep everyone posted.
Friday May 27 - ENT - I was sure that they were going to tell us at this visit that Charlotte needed tubes BUT HE DIDN'T! Dr. Todd thinks that her ear drums look red because of her poor oxygenation, and while she does have some fluid in her ears, he doesn't think that tubes would be of much benefit. WOOHOO...finally some good news.
So that's that. 10 days, 4 doctors, 2 crazy parents and 1 amazing little girl who just keeps on trucking despite it all. Again, big prayers for Tuesday...and maybe some for me this weekend so I don't get too anxious!