Sav, Granna and I spent all day last Wednesday at Cook Childrens Hospital for her kidney testing. Papa stayed home with the sick boys. I took lots of pictures to send to Joe because he had to work and it killed him to not be there.
Here is a quick picture that Sav let Papa take before we headed out. I swear she primps in front of this mirror for hours…
Do you think she had enough comfort buddies? Sweet, brave girl. At least we didn’t have to drag her out of the burb, kicking and screaming, like last time. I was so proud of her.
A couple of weeks ago, Sav asked Granna if she would come with us to the hospital…of course Granna’s heart melted and there was no way she would have missed it. Love her.
Savi’s sweet Great Auntie Rosie, from Minnesota, sent her a beautiful angel to keep with her during her testing. Savannah was SO proud and beaming. It never left her wee little hand.
Sav was so brave…just sitting there playing on the iPad (the kids only get to play with the iPads/ipods when they are in a waiting room…keeps it “new” and the kids nice and quiet! tee hee).
Savannah picked out the flavor “cotton candy” to smell before going to sleep. When it was time to put the mask on, she said “no thank you, I’m good”… (I chuckled and looked at the anesthesiologist and said~ “Well, that didn’t go the way you had planned!” LOL) So, for the next 30 seconds, Sav fought her little heart out (with 5 grown adults holding her down), but the mask eventually won.
She woke up with an IV, a foley cathether, and let me just tell ya- she was NOT a happy camper. Here she was screaming, “I want my brothers….I just want my brothers…” (melted my heart all to mush)
Test #1: Nuclear Renal Scan with Lasix Washout (60 minutes). Sav screamed and fought for a good 10 minutes and finally settled down with an iPad, itunes, a popsicle, 1 stuffed animal, 1 baby doll, snow white, a cartoon, and an angel stone.
Test #2: VCUG (30 minutes). Sav was very brave and I actually thought she might get through it without any tears…
…not so much. But she did such a great job. I was beyond proud of her. Those bloodshot eyes kill me. This NEVER gets easier and it is SOOOOOO exhausting having to remain calm and reassuring when your baby is crying out to you for help. UGH. HATE IT.
We broke outta that joint and let the princess choose wherever she wanted to go…Chili’s it is. Love seeing that smile back on her face. She bounces right back like nothing ever happened! Its Mama that is pooped out for the next couple of days! LOL.
After the hospital, we rushed home, woke up the brothers from their naps, changed into swim gear, drove across town to swim lessons, drove back home…and I found this…
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This was it…my tipping point. I had reached my limit. Shiloh had knocked over all of the trash and had gone to town (raw chicken, raw egg yolks, hair from Joe’s haircut, etc. all over the floor) I LOST IT. I don’t break down often, but after a LONG, terrible day of watching my baby girl scream and running on empty, I broke. When Joe got home from work, I immediately left for a solo-movie by myself. Thank God for that man. Couldn’t do this without him!
TEST RESULTS: All good news…well, relatively speaking. While you and I have normal kidneys that function at 100% on both sides~ Sav’s kidneys are at 60% (left kidney) & 40% (right) function…but that is good for her. Dr. Pinto said that if the number ever falls to 20% or below, the kidney is no good…and unfortunately, her OTHER kidney would not be able to sustain life (b/c it is bad too)….BOO! Scary to think about, eh? But for now, all is working and she has zero reflux! So, I’m just gonna focus on that and leave the rest up to God. No sense in worrying, right? (at least, that’s what I’m going to keep telling myself!)
Savannah will have a follow up renal sonogram in one year to see how everything is looking. Thank you SOOOOOO much for the prayers and positive thoughts!!! We are blessed to have such wonderful people around the world thinking of us.
22 comments:
Glad she has that behind her for now! Continued prayers for Sav and all of you. I can now say I understand your exhaustion. When Harrison got so sick last week in the NICU and we weren't sure he'd make it...well, that was really tough. I was wiped out for days. You are a tough cookie, Suz! Glad you've got a great husband to help you through. xo
Sav you made it!! you are brave girl!!!
What a nice pink gloss you have, don't you?
lots of hugs and kisses from Bilbao in Spain, will you give them to your brothers??
Thank you!
Hi Suz- Long time reader, infrequent commenter : ) So sorry poor sav had to endure all the testing again...and so happy for the good news! I wondered if they have ever mentioned having little miss on any special diet for this? My BFF's hubby had a whilm's tumor as an 18mo old (30yrs ago) and after his chemo/radiation & surgery they released him. Now in the past 3 yrs after seeking out f/u on his own as an adult he learned he has 60% function in his remaining kidney and was placed on a strict low sodium (almost none) and low protein diet to maintain low blood pressure in hopes of not taxing the kidney. I know you are an RN and I am probably bringing up a mute point for you; ) But wanted to mention it in case it may be of help to Sav..Will continue to pray for her, her kidneys and for you all to have the strength to get thru it : ) *Hugs*
You are such an amazing momma. I know all you want to do is grab her and run out of that hospital as fast as you can! Praying that her kidneys stay strong and for lots of strength for you and Sav.
Glad to hear good results for Sav. She's such a strong and beautiful little girl. What a day!
Paola Meyer
Sav is such a brave little girl. I always think of my little girl while reading about all of Sav's trials and it leads me to believe you are a very strong Mommy. We do what we must for our kids. Two strong ladies, something I admire. Love from NY.
-Theresa
So sorry. My daughter has had a couple of VCUGs too. They are awful. I pray God will heal Sav's body and take away the stress from all of you.
Your poor baby girl!!! The pictures kill me, and I can only imagine how awful it is so see her go through it again and again. Thank God for Granna & Mom to see her though it, and all of her 'friends!'. Bless ALL of your hearts!
Hi Suz! I always read, this is my first comment, broke my heart seeing Save's bloodshot eyes! You are such a strong mommy! Your kids are so lucky to have you! How awesome of Joe to let you catch a flick alone! Love reading about you and your amazing kids. :) Thanks for sharing your lives with us!
She did a great job!!! It is so hard to watch them be scared or in pain and be unable to help :(. My 1 year old had a nuclear renal scan in November. They are monitoring a past blockage in her left kidney. She cried herself to sleep and it broke our hearts! You are so right to give it up to God- he will worry about it for you :). Savannah is a precious one! So cute how she wanted her brothers!!!
I love your blog, it always makes me smile! My all-time favorite must be when Savannah cut everyones hair! Haha!
Suz...I don't know how you did it with no tears, I had tears just looking at her sad little face and she's not even my daughter. I am so glad that every turned out good with these tests! Maybe she have a great year and improvement next year! I will be praying for her! You are one strong Momma and I'm so that that you share your stories here. I love reading them and I just wanted to tell you that you are stronger than you know and that strength is encouragement to me as a mom of two little kiddos! Oh and...Thank God for wonderful hubbies that take over when stressed out Mommas need a break! :)
Poor munchkin! Glad the test results are positive...she did so well, what a brave little girl! Thinking of you guys!
~Alissa in Canada
So glad to hear good results for SAV. Nothing harder on a mama than not be able to help her baby.
So glad to hear:O) I will keep you in my prayers!!
I am definitely praying that her kidney function would be restored to 100 percent!!!!!
Bless you both for all you had to endure. I can only imagine how tough that would be to stay strong while you see your sweet thing afraid and hurting. So glad the tests came back ok for now. Hoping she remains healthy.
That is one ADORABLY PRECIOUS little girl you have!! So brave! And crying for her brothers...ugh, right through the heart! So glad that all is okay with her and will pray that it STAYS that way!
Love Dr. Pinto, he's our Dr. too:)!!! My daughter Kinsley was diagnosed with Kidney reflux disease at 4 years old. She had only had one kidney infection prior. We did the VCUG once and I could hardly take it - so awful! I am praying Savannah's kidneys continue to function well. My mother has severe kidney disease, has gone septic three times, survived and had to have reconstructive surgery on her ureter - Praise God, since then she has been fine and has never had to go on dialysis!
Thinking of you as you remain a strong mama for your little sweetie!!! Love your blog - been reading it since the quads were babies!!!! My good friend Leah Ball got me reading - she was having her twins when you had the quads at the same hospital:) Blessings!
Miracles happen - praying for 100% kidney function for Sav!
I just wanted to let you know I am a working mother of two in SC and love reading your blog. Although I can't relate to the quad life, we're all mothers and you seem to be a great one. I get lots of inspiration and ideas from you. If you can manage quads, work, and manage to squeeze in adult time, both with your husband and girlfriends, then there is hope for the rest of us.
As for your daughter, my heart breaks when I read that any child has to undergo such things, but you are right God is in control.
Keep your chin up and that positive attitude. You are a real inspiration.
So happy to hear that the results are (relatively) positive! and omg Shiloh...... this is why we keep Travis in a crate all day long. I don't think I could handle it even without the day that you had.
You are incredible - I am so impressed how well you get through everything and what troopers you all are. sending lots of positive energy to ya'll.
After all that I am amazed that Shiloh is still alive and running! Sorry you got pushed to breaking point but I hope the movie was good?
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