
This month has been a whirl wind to say the least. How about I give you a little recap...
May: Eden's eating progressively slows down. She's whiny and irritable, I pass it off as teething.
June 4th: Take Eden to the doctor for fever and vomiting. Doctor says she just has a virus.
June 6th: Take Eden to the doctor... again, for fever and vomiting. In the mean time, going through a bottle of ibuprofen and tylenol. Doctor says possible UTI or roseola.
June 8th: Back to the doctor with Eden, fever still going strong. This time she's starting to act a little lethargic. They test her urine and UTI comes back positive.
June 17th: Follow up with the Doctor. Eden's still not 100%. He orders an ultrasound and a VCUG. In the mean time, he puts Eden on a low dose of antibiotics to ensure no repeat UTI's.
June 21st: We take a trip to the hospital for Eden's ultrasound of her kidneys and her VCUG (where they sedate Eden, stick a catheter up her and fill her bladder with dye. Then they watch on an x-ray to see if her urine reflux's up into her kidneys... it's not a very fun test.)
June 22nd: I talk to the doctor, he informs me that Eden has grade 3 VUR . So basically, every time eden goes to the bathroom her urine reflux's into her kidney's. Generally, the reflux in and of itself is not a problem since urine is sterile. The problem is when you have bacteria in your urine (a UTI) and the urine full of bacteria reflux's into the kidney's causing a kidney infection... which can lead to kidney scaring... which can lead to kidney damage. Not good. So to prevent further UTI's Eden is to stay on antibiotics everyday for at least a year and then do another repeat VCUG.
During this whole month I still feel pretty uneasy about Eden. She's still not herself, she's still irratable, and she's still not eating like she should be. Before she was sick she was drinking around 40 oz a day and would eat 1 to 2 jars of baby food in a sitting. Now it was more like 18 oz of milk and 1 jar of baby food a day, if we were lucky.
I expressed concern to the doctor, during one of my many phone calls, that Eden is just not getting better. I told him I felt like the infection had not been completely annihilated and that the low dose of antibiotics was just keeping the infection at bay (it kind of sounds like a war). He assured me that that was not the case and that it would just take some time for her to get better. I felt like I was crazy, like I was making this up all in my mind, that I was overreacting.
June 27th: I called the doctor and asked to be referred to a pediatric urologist at Primary Children's hospital and again, expressed the same concern for Eden.
June 28th: Eden starts throwing up again. We go to the doctor's and they do another catheter for a urine sample. This particular doctor (who is not my doctor) was performing the procedure and it was almost as if he had never done it before. It was like he was fishing for something, tying to get it in the right spot, mean while me and two other nurses are holding her down screaming and crying uncontrollably... it was terrible.
June 30th: The urine sample comes back negative for a UTI... and again, I feel crazy.
July 5th: Eden starts a fever again along with vomiting. I call the pediatric urologist and they fit me into their schedule.
July 6th: We visit the urologist. She looks at the x-rays and finds that Eden as a duplicated ureter on her left side. We talk about the options of surgery, but decide to wait for a year and then reevaluate. Eden gets another catheter for a urine sample and the doctor writes me out a prescription for an antibiotic and sends me on my way.
Throughout the day, Eden progressively gets worse, I try to give her Tylenol to keep the fever down, but she throws it up. Eventually, she starts throwing up overtime she drinks. I call my doctor and ask for a shot of antibiotics since I'm feeling worried about her, by this time it's about 5:00 pm. We go home and Eden is not doing any better, she's so sick that she doesn't even care who's holding her. At this point I try to stop second guessing myself and call the doctor on his cell phone. I explain the situation and he sends us to the hospital.
July 6th-9th: We call the hospital our home. Eden is diagnosed with a kidney infection and cries at the sight of nurses. My biggest concern was that the infection was going to go septic (which, fortunately, was not the case. Although I felt like it was starting to.)
The highlight of her hospital stay is seeing her brother and sisters. She would light up the second they walked through the door. Poor Kaleb, the first time he saw her he began to cry. When I asked him what the matter was he said, "I just can't help it, Mom. Every time I look at her it makes me cry and I can't stop!" I told Kaleb I knew exactly how he felt.







Eden is home now and doing better. She's no where near as sick as she was, but she's still not 100%. Her eating is still poor and she's not completely her happy little self. The doctor says it will take her a while to get back to normal since she's been sick for so long. The true test will be when she finishes this round of antibiotics.
If she continues to not thrive and do well, surgery will be considered sooner rather than later... we shall see.
Thanks so much for all the well wishes and thoughts via facebook and here. It reminds me that I need to be a more thoughtful person and that I've been fortunate enough to surround myself with such amazing people.
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25 comments:
You know where to find me when you are ready for a FREE MEAL!!! :) Love you Gin you are a great mom!
Good job mom, as tough as it is, and as crazy as you may feel, you were her best advocate!! will continue to pray, I had a kidney infection way back in college - no fun, but she'll get back to herself, esp with her loving family surrounding her!!
Poor cutie! I am glad she is home. Hope things start slowing down and that she is back to her darling self in no time.
so sorry ginnie. i've been thinking about you guys the past couple weeks. and how sweet is kaleb? that brought a tear to my eye. and doctors are dumb. seriously, it can take a long time looking around before you find one that actually knows what they're talking about. hope sweet eden gets feeling better soon.
i am so sorry ginnie? i can't even imagine how hard all this has been on you and your family. i am so glad that there is a bit of releif and you at least know what is going on. thinking and praying for your little eden.
So great to hear she is coming around. I've been thinking about you and your family often. I know how hard these things are and what stress it puts on everyone, we are still not recovered over here :)Keep hanging in there and know that you are eden's #1 advocate, you are doing a great job!!! It is super difficult to now be home and be the on call nurse, just do your very best and know you were meant for this job! All my love!
I can't wait for the day that Mc will LOVE her brother :) Glad she is home and that she is doing well :)
Ginnie, I am so sad to here about all this mess! Ugh, it can be so frustrating waiting, waiting, waiting for the dr.s to finally figure out (hopefully) what is going on. Lilly has Level I Urinarly reflux, and Noah just went through all those tests after he had a UTI. He also go to do a spinal tap :( If you remember the Blakes, Albany had Stage 5 and it did go septic. I am glad that you guys are figuring out what is going on now....Good luck. Oh, this is Laila, but using my sisters computer.
Oh look, I did get to be me!!!!
Oh man, what a roller coaster you have been riding! I was teary eyed reading your post, especially the part where your son saw her. Sheesh!
Good for you to trust your instincts and keep following up with these doctors. You are your family's biggest advocate, and thank heavens you were so on top of things!
Good luck recovering! I hope she's back to 100% asap!
Lots of love,
melis (the random stalker that found your blog somehow... hA!!)
What a scare you all have been through! I'm glad to hear she is back home and doing better.
I am glad she is doing better; and will pray for a speedy recovery....poor baby, I can't imagine how hard that must be watching her so sick. :( She is such a beauty! I have been thinking of you and your family! Keep us updated, praying for you all!
So glad she's doing better! I love a mother's intuition! :)
Oh your sweet little baby! I'm so glad to hear things are going better. Nothing is more stressful than being a mother and having any one of your children sick. Hang in there!
Wow to the ugh-ness. Does this teach you to trust your mom gut, to not feel like doctors know more about your child's health than you, to go ahead and BE the annoying mother who insists on things, or all of the above? Hoping things settle down quickly for all of you!
So glad she's home and doing better. You're a good mom. Hang in there. :)
I'm so sorry Ginnie! I hope that Eden is feeling better and that you and your family can feel much better about the situation. That totally sucks..let me know if I can do anything..like bring your dinners, a diet coke?, etc....thinking of you
I'm so sorry for your nightmare. You and your family have been in my thoughts and prayers. I'm so glad she's home and hope that she has a full and speedy recovery.
Wow! That is awful! I am so sorry you all had to go through that1 I am glad she is home and hopefully all will be well really soon! Way to be a great Mom and stay on top of things!
Yay for mother's intuition. Glad everything is getting better.
Glad to hear things have gotten better!
Hello friend. My heart goes out to you. So sorry to hear that little Eden has been so sick. There is nothing worse than a sick little baby. You and your fam have been in my thoughts and prayers. Hope you are getting back to some "normality" what ever that is durning the summer time. Would love to see you. We are coming to SLC the first week of Aug. Can't not see the Johnsons. Call me when you get some time or I will do the same. Loves.
oh sad.Is she better? oh i know that im her sister!
Oh my goodness, just getting caught up here. I'm so glad she is feeling better.
:( Poor sweet thing. Tear at my heart strings!! Glad things are starting to look up!
xo
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