I'm kind of feeling like a rock star mama today, so I am just going to enjoy my small victories here ;) I popped into the pediatrician's office (yes, I am a doctor stalker now) this morning and asked to see her rather than continuing to play phone tag. She obliged and I got the "official diagnosis" of urinary reflux with a grade of 3 on the left ureter and 4 on the right side. So on a scale of 1-5, she is up there. I also got my very own stash of urine sample cups so we can monitor Gracie as well as a prescription for a "maintenance antibiotic" to help protect her until we get in to see the specialist. Of course, our trusty pediatrician knows all of the best specialists in the valley and I have already set up an appointment with this pediatric urologist for Tuesday May 6th at 8am. Pretty good, right? And did I mention that this urologist knows and works with our amazing ENT? So if there is a need for surgery, I already have the right people in place. Phew! Less things to worry about....So on one hand, we have another challenge. On the other hand, we caught this before it caused Gracie any serious or permanent damage. Again, clearly because Ramsey and I are awesome ;) Haha..... Meanwhile, Gracie is thankfully feeling great! This is a huge relief- HUGE! I just about can't stand to see her in any pain or discomfort. So in the midst of this, we are insisting upon having fun when everyone feels well!! For example, we had an impromptu family dance party last night- yahoo!!!!!!!!!!!!! And today I turned the playroom into a pillow pit and the kids jumped all around :) This may be another bump in the road, but Gracie is amazing and we will conquer this challenge too. We will definitely let you all know what we learn on May 6th. And wish me luck for that appointment because they are going to do an ultrasound on a wee girl who just went through a rotten VCUG.... she is not likely to go along with this willingly. And she has to show up having drank 16 oz of water without peeing for 30 minutes! Hmmm..... I am going to need to be in full-on SUPER MOM mode ;)
Well, I held out as long as I could, but it's just easier to have all the info in one place ;) Not to mention the fact that all of the support and concern we have received is incredibly helpful, so I like to share. Thank you all for supporting us through this next (hopefully minor) adventure. I just copied and pasted the emails I sent to our family (below) if you are interested in the details. But here's the short version: Gracie has Urinary Reflux with a grade of 3-4. I will speak with her doctor on Monday who will, I am sure, refer us to a pediatric urologist. This condition is usually outgrown over time and can be managed with a daily, low dose of antibiotics. But in severe cases, surgery is required. I have no idea which will be recommended, but we obviously hope to avoid surgery. More soon!
Emails: Hello family,Well, I am hoping not to have to add another tab to my blog, so I am starting with this email. Poor Gracie girl started on March 19th with a UTI and we still haven't kicked it. After two urgent cares, one ER trip, many pediatrician visits, and urinalysis and cultures, we are on antibiotic number 4. She started with the common E Coli induced UTI infection but has now gotten the Pseudomonas bacteria somehow. I do not recommend googling this bacteria because it will scare the crap out of you (it's too late for me). This one is tricky to treat, so they now have her on Cipro. We are beyond the "norm" and our doctor is setting us up for further testing which will check for Urinary Reflux. I found this web page with a good description of the condition and the way they test for it: http://www.mmcsurgery.com/pedia_uro/conditions/reflux.html In the meantime we have tried it all- Gracie is pretty much potty trained, cranberry juice, probiotics, tons of water, rest, showers instead of baths, gentle soaps without dye/perfume.... you get the idea. So I have been on the phone with doctors today, getting information to and fro. As soon as they schedule us for this test we will let you all know. And hopefully in the mean time the Cipro will work. I am happy to report that Gracie has been able to eat and keep food down today, has no fever and is not terribly uncomfortable, although she still doesn't feel great. So we are relaxing in the back yard, watching Mickey Mouse Clubhouse and reading books. Not such a bad day, really ;) More soon, Lauren Hey all,Thanks so much for the support and for sharing some personal experiences. Gracie is definitely feeling better on the Cipro but still not quite herself. We did get a VUCG scan scheduled for tomorrow morning (the 18th). They have to use a catheter :( but no anesthesia so it is not super invasive. Just unpleasant. So Gracie and I have been using her Doc McStuffins (Disney Jr character) kit to play doctor today and I have been using dolls to explain exactly what will happen tomorrow. Here is another description of the test: http://kidshealth.org/parent/system/medical/test_vcug.html So it stinks to have her go through this but they get lots of info from this test so we can get to the bottom of this and get our girl feeling better once and for all! We'll let you know how things go and what the results are when we get them. Love to all of you, Lauren Hey family,Well, Gracie has urinary reflux. They rate the severity on a scale of 1-5 and we don't know the rating yet. Waiting for our pediatrician to call us. The test was a tough one :( so we're glad it's over. And we are glad we did it because the good news is that this is very treatable and we can protect her kidneys. We are home resting now. I wish I could say that Gracie is doing great, but she is worn out and pretty sore from the catheter. She said that the doctors need to "sit in time out for hurting her lady parts" :( Needless to say, we will be visiting a pediatric urologist very soon. More soon, L |
AuthorLauren, a Yoga Teacher, Choreographer, Director.....and new Mom!! I hope to add "tube slayer" to my list of credits. Archives
December 2015
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