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!
10 comments:
Oh my Katie...sounds like a busy week for all of you. Don't you LOVE long doctor's appointments? Nothing like spending 3 hours at the doctor's office. It's always a bit "double-edged" going in anyways...glad to know my kids are healthy, but worried about what we might catch there...paranoid mother here.
Maddie is simply adorable. We will be sharing lots of prayers for a healthy family, successful cath, and your deductable to be met SOON..YIKES! Prayers for sweet Gracie's family, too. How heart wrenching.
Take care. It was nice to have a moment to sit down and catch up on my blog stalking...I miss reading about your sweet, sweet family so often.
Sorry you've been spending so much time at the doc office... Not fun. Mag's had her synagis today but home health comes and gives that to her. As soon as the nurse walks in, Maggie starts crying. Today, she saw her walking to the door and started saying, "no shots, no shots, no, no". Poor baby. Maggie has urinary reflux as well. Hers is level 2. We found it last year right before her 1st b-day when she got a UTI. They then did the VCUG and diagnosed her with the reflux. We don't go back until June for that. I'm hoping that she's outgrown it. It'd be nice to take her off one of her meds. Anyway, I'll be praying for a smooth cath and higher sats.
Hugs,
Faith
Miss Maddie- Luke gives you a big gold star for surviving all your doctor's appointments this week. He's saving an extra special treat for when you sail through your cath in two weeks. In the meantime, we will be praying for you and for the doctors!
Get better soon, sweet girl, and Katie, hang in there. It is NO FUN to see your kids sick and inconsolable at times.
Will you be in Seattle for the cath? We would love to come visit if that works out.
Love, Jesse & Luke
Oh Sweet Maddie... feel better soon! Those synagsis shots are NO fun. I can't believe you have to pay so much out of pocket... geez.
Glad to hear the kidneys are functioning okay. What a relief!
Now onto the heart cath... We'll pray that things go smoothly. Caths are miserable the older they get... the worst! Hopefully they'll fine tune her and she'll be good for another year or so. Owen's sats are that same range ON 1/2 liter of O2. I thought it was a good range!?
I feel your pain! Seems like our family has been sick for two months straight. Will be praying for you during the heart cath. Drop me an email or call sometime.
Angie
No Doctor's office is fun enough for three hours, not even at Children's! We'll keep her in our prayers for a good cath procedure.
Katie, you have had such a busy week! I'm so sorry to hear about Maddie's fever. I hope she recovers from that quickly. We will definitely keep her cath in our prayers. I know it will go well!! She is just such a strong little girl and absolutely adorable! I can't believe your Synagis cost...ours is not even that high! I think there must be gold in those shots! Ha!
Hope you have a nice relaxing weekend...it sounds like you need it!
Hi Katie, just to make you feel a bit better (maybe) Mary Clare's sats stay in the low 80's also. When she is not feeling well, they dive into the 70's. It hasn't been an issue so far for her and her cardiologists just tell me now that they know that this his her "norm." Like Maddie, they have never been much better, even after her Glenn. I hate that she has to have a heart cath. I'm sure it will feel good to see for certain how that little heart of hers is doing though.
I feel your pain on the shots! I laughed when I saw your $3984.00, because that is the exact same price on my pediatrician's invoice each month! We have a high deductible, where we pay 100% until we hit $3000, fortunately or UNfortunately, (however you choose look at it) we meet ours with that very first shot each year! :) I hate insurance companies! Our deductible keeps going up because of our sweet Mary Clare...UGGH, so frustrating!
Anyway, didn't mean to "get on my soap box" which I have had a tendency to do lately!! :) I will certainly keep sweet Maddie in my prayers! Hope she is feeling better very soon! Love, Kerri and Mary Clare
We'll being praying that all of the kids start to feel better and you guys stay healthy this year. We'll also be saying a special prayer for miss Maddie. I hope all goes we'll in Seattle. Just remember you guys are always in our thoughts and prayers. Hope We can get together soon I would love to see you and maddie. Love Tracy Fuhriman.
HAPPY BIRTHDAY MADDIE! Aunt Susan
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