Maddie with our nurse Amanda from Dr. Allred's office. She's always in tears around Amanda which about puts poor Amanda in tears too! She's been our nurse for all 3 kids since birth; every shot, temperature, and measurement has been taken by her. She's the sweetest!We've spent a lot of time in doctors offices this week with a fussy girl. It's Maddie's least favorite place to be. Tuesday was Maddie's nephrology appointment in Seattle to follow-up on her kidney issues. She had a renal ultrasound and visit with Dr. Jackson and Dr. Hingorani, and thanks to a glitch in scheduling our "big plans" to shop didn't work out due to spending most of our day at Children's. Kidney wise, her left one showed some growth and is now in the range of being "somewhat" normal, which was great news. On ultrasound, they can't really tell the function but due to that it grew, they think it must be working. She is still being treated for reflux with the Bacterim and they don't have any plans of taking her off of that until she's at least 2 years old due to the risk of infection from UTI's and being a cardiac kid. It was a big relief to know that her kidney's look good and the ureters have improved on ultrasound. Yeah!!! She was in tears throughout the entire ultrasound but flirted with Dr. Jackson at the end of the appointment, after she realized there was no "hurt" involved, it was cute.
For the past month, her cardiologist and I have been in touch regarding Maddie's sats. They have been on the low end, consistently hanging anywhere between 76-82. Her sats have never been very high, even after her Glenn, so Maddie has a maintenance heart catheterization coming up in 2 weeks. If you're not familiar with what a cath is, you can read about it here. Dr. Vernon wants to rule out whether she needs a little "tune-up" with ballooning or a possible stent if there is narrowing or scarring from her surgeries. Maddie's pulmonary arteries have always been small and narrow, so they may need tweeking to get those sats up and more blood flow through them. We need them to grow! Of course I don't want to have her go through this, there is always risk with a cath and she'll have to be put under and intubated. She's doing so well and I don't want anything to jeopardize this! But it will be nice to see what's going on in that heart of hers since this is the most accurate way of diagnosis. We may learn that everything is just fine and her sats are just going to hang on the lower end. So, that's where we're at with her heart.
Last but not least, Maddie ran a fever all day yesterday. She also had to go in for her Synagis shots to Dr. Allred's. To rule out whether this was a UTI or not, she also ended up having her bladder cathed to get a good urine sample. It went smooth, came back fine, and she received her 2 shots, which btw, totals $3984.30 a month on our insurance EOB's!!! We get to pay $864.48 of that...yikes, we'll meet our deductible early this year due to those costly shots! (Had to share the real price since back in a December post I estimated the cost). It has kept her healthy from RSV though...especially since so many little ones in our town have had it this winter! The boys were with us as well and Cade also got some attention from Dr. Allred since he's had such a bad cough and refuses to eat lately. Of course, it's a viral thing so we're riding out all of the bugs we've acquired lately and hoping Maddie can beat this too before her heart cath procedure in 2 weeks. So two days in the doctor's offices at 3 hours each was enough for Miss Maddie and the rest of us! She knows what is up now and just cries from the minute we get there... she's still running a fever, is not herself and only wants held, so I had time to post, and one-handed at that!
