"You have nothing in this world more precious than your children. When you grow old, when your hair turns white and your body grows weary, when you are prone to sit in a rocker and meditate on the things of your life, nothing will be so important as the question of how your children have turned out. It will not be the money you have made. It will not be the cars you have owned. It will not be the large house in which you live. The searing question that will cross your mind again and again will be, How well have my children done?"

~President Gordon B. Hinckley

Tuesday, September 9, 2008

The latest and NOT SO greatest!

The title is not really a great way to start a post off right, but we've been in a hole lately!!

Without going into EXTREME detail, I have had a SEVERE...TERRIBLE...THE WORST MIGRAINE OF MY LIFE since Friday. Sometimes it was worse than others, but come Saturday night and all day Sunday, I thought I was going to DIE! I cried for hours because of the pain. My kids didn't know me this weekend because I was in bed all day. Along with it I had fevers and chills and body aches. I couldn't figure out what was wrong. Also, this past month, my normal migraines of one a week or so, got to be as frequent as about every other day. SO, by Sunday evening, shoving EVERY POSSIBLE medicine I could think of into my mouth, and NO sign of even the SLIGHTEST relief, Seth took me to the ER. THANK YOU NANA FOR WATCHING OUR BABIES...we really appreciate it!! After urine and blood samples, having a LOooooooooooooNG Q-tip shoved through my nose to "swipe" my throat, chest X-rays, a CAT scan, and an IV with fluids and SIX, yep, SIX different pain medicine, I left with no answers(everything was clear) and no relief. I woke up at 4:30 am (an hour before having to be up for Lilee's surgery...more on that later) and I was in EXCRUCIATING pain. We searched all our "old" medicines and came upon some Tylenol with Codeine that hadn't expired. I popped the pills and woke up at 5:30 feeling the FIRST bit of relief I had in DAYS!! It was wonderful. Unfortunately...I had to keep taking the codeine all day yesterday to ward off the nasty migraine which was fine since Seth was home...but today, codeine will just NOT due. SO, since I STILL have this nasty thing and since I am nauseous beyond belief, I am taking Midrin, a prescription I got at the hospital, and it's "helping"! At this point, I'll take it. ANY advice out there on how to alleviate migraines I will TAKE IT ALL!!!

SO, We get Lilee to surgery at 7:30, she goes in at 8:30, the Dr. comes out by 9 and says, he's done and it went well. GOOD. Then he says, "there was one little thing though". OKAY. Apparently, when they went in they were expecting to work on a level TWO reflux...what they found was a level SIX...only the HIGHEST it goes on the scale. SO, this is when I can either freak out or count my blessings. Blessing ONE...I am SO SO grateful that I pushed and pushed to have the surgery. Since Lilee's reflux affects BOTH her kidneys, had we chosen to do the medicine route and "hope" it corrected itself, Lilee could have had complete kidney failure by the time they figured anything out...by TWO!!! That is just insane, I am SO grateful that I persisted and made them listen to me! I am also feeling so blessed that it didn't cause more damage in the time that she has had it. Here is the bummer though. This particular surgery is only done for patients who have a low grade of the reflux. Someone with Lilee's severity would NEVER be given this surgery. SO, there is a 50-50 chance it will work. We'll go back in 2 months to test her reflux again and see if it's gotten better. If not, she'll need the full on super invasive surgery to heal everything completely. YIKES! I'm a little bit annoyed with everyone involved in this whole process. How could she have been misdiagnosed SO SEVERELY?! I'm also really upset with the urologist performing the surgery. It is HIS job to look over the films that the radiologist sends him and make sure for himself that the reading is accurate, not just take the radiologists word for it. OBVIOUSLY nobody took a lot of time with my daughter's tests, and unfortunately she is the one paying for it. Of course, everything may heal itself and we won't have to worry about any of this, but it is still all very frustrating for me. As for Lilee...she is happy as a clam!! I swear, she slept 4 hours, woke up and has been a DOLL every since!! I love that little girl!!! Prayers prayers and more prayers are asked on her behalf...especially that this surgery WILL work and she won't need to worry about anything more in the future!!

That's us! At least two of us. More to come on Seth and Keat later!!

16 comments:

Rochelle said...

HOLY COW Nikki!!!! I was gonna post some smart remark about your lack of postings...but now I know why. I'm so sorry about the migrains..they are the worst (I've heard) and I don't know much that helps. I've heard massage can help some.
Poor little Lilee...I can't believe she was misdiagnosed. We'll be praying for you!

Brittney (Dayton) Bond said...

Oh my goodness! I am so sorry all of this has been going on! there is nothing harder than having a migraine and trying to take care of kids, etc. I really hope you get feeling better soon. Poor Lilee too... goodness! Hopefully the surgery works.. keep us posted and let me know if I can do anything!

Francis said...

I am so sorry to hear about Lilee's condition. We'll be sure to keep her in our prayers. Also, I hope your headache goes away. There's nothing worse than trying to get things done and your head is pounding. Hang in there!!

Whitney said...

Holy cow! I just wrote you an email but who cares about that...you poor thing! I can't imagine having such terrible pain with NO RELIEF even with strongs meds. Sheesh! Bummer! I'm glad Lilee is happy though! Good luck recovering...both of you!

nat said...

OUCH!! I have been wondering what you guys have been up to. Hope that everything gets back to normal there soon. And that everyone gets feeling better.

nelson6 said...

Yuck...I know how you feel for sure...I take Maxalt for my migraines and it works really well for me. My Neurologist says any Tylenol will trigger more migraines, so you might want to watch that...if they keep up my nerologist is the best in the valley for chronic migraines...it's a complete lifestyle change but definitely worth it! I'll say a prayer for you and Lilee for sure...sounds like she's being watched over as it is! Feel better soooo soon and let me know if I can do anything at all to help!

YouHaveHowMany? said...

My Tyler had the same reflux problem. Fortunately it was only on one side and he was able to grow out of it. What a pain (literally and figuratively!) Hang in there. Headaches are the worst! They are so debilitating! You are definitely in our prayers.

Ashley said...

Wow Nikki... i'm hoping you are feeling better by now. I'm glad Lilee is doing well and I pray this surgery will be her only and she will stay happy as a clam!!! You are a great mommy and I look up to you!! Can't wait to see you guys when you come out :)

stef80 said...

Nikki,
You are so brave. Chloe goes in for surgery on Monday and I'm a nervous wreck. Sorry to hear about your headaches.

Kristi said...

Oh Nikki, I am so sorry! I can't believe you came feeling like that! Migraines are horrible and usually i just lay in a dark room wishing my head would just blow up already....No advice - I have never found anything to help although I have tried a million RX's.... etc...
Lilee, that is insane! I am so sorry! She is in our prayers, I am sure that now the the Dr's are aware of how serious things really are, you will get it figured out quickly.
I really wish I lived closer so I could come help, and gave you a hug!

The Kurtzeborn Family said...

I am so sad for the girly girls in your family. I just wish babies could talk and that they could tell us what's wrong/what hurts! But you're right, even when they are hurting they just seem to smile through it all! I hope everything gets straightened out with her and that her little body is working ok.

It's so hard to be the mommy and be sick at the same time! It just stresses you out because you feel like you can't hardly take care of your kids and then you seem to get sicker . . . and it's a neverending circle! I don't know if you have a hot/cold pack, or a corn bag, but it helps to put heat on a migraine. It did for me anyway. I got them all the time when I was preggers with Mallory. I loved the hot packs! It at least takes the edge off. Best wishes for both of you getting better :)

mshjwj said...

Oh my gosh that is crazy! A level 6? I thought 5 was the highest. What did Dr. Argueso say the reason for the misdiagnosis was? Was there some error by the technicians performing the test? I would want to know too what went wrong. Maybe it is a blessing in disguise though b/c if the DeFlux works and she doesn't have to do the other sugery, then that would be awesome. We will keep her in our prayers.

meagan said...

That is so difficult. Good luck. You are in my thoughts and prayers.

Jojo's Circus said...

I am so sorry that your poor family has been through all of this lately. I hope you and Lilee both feel better soon! Your family will be in my thoughts and prayers.

Donna said...

I'm SO sorry about the migraines. My hubby used to get them REALLY bad, to the point that he couldn't go to work some days, and I hated to see the pain he was in. It seems that since he has cut WAY back on caffeine they don't show up nearly as often. I don't know if that applies to you, but I hope you figure something out.

I pray that you find a GOOD answer for Lilee and all works out well!!

Jace and Heidi said...

Oh my goodness! I feel so horrible that you had to have such bad migraines! It's too bad they couldn't find something that they could just "fix" so they never return!! Lilly. . Oh my! poor baby! I'm proud that you kept pushing!! Go girl. It takes mom's persistence to get things done in the medical community. I pray that things will go well for her from here on out!