Friday, April 13, 2018

Hope Update


God is SO good,
God is SO good, 
God is so good, He's so good to me.

He answers prayer, He answers prayer,
He answers prayer, He's so good to me....

The hymn goes on for many verses, but this is the prayer that's been on repeat in my head these past few days.  If you've been praying for Hope, thank you.  We really appreciate the prayers!  She did NOT end up getting better after my post from this past weekend, and it's been another challenging week.  Thankfully we were in good hands with our group of pediatricians, and these last few days have proven what a great team they are. 
Hope's fever continued over the weekend, and then in to Monday, and when she started having big shaking episodes along with her fever, we decided it was time to go back in to be seen again (I had taken her in on Thursday).  She was not getting better.  We were still having really tough nights, and I felt like all I was doing was pouring Motrin in her all the time.  So in we went on Tuesday afternoon.  We didn't get to see our "usual" doctor, but we saw Dr. E. and he was awesome.  He did an exam on Hope and agreed with the doctor from Thursday, that her chest and ears were perfectly clear.  So why this persistent fever???  He said she could have just been really unlucky to get two viruses in a row, but wanted to check out and take the next step to see if it was a UTI.  They aren't supposed to happen in little kids like Hope!  But the process was fairly simple- they put a bag in her diaper to catch some urine so they could test it.  I have to give a huge shout out to my big kids for being awesome during our long dr visit!  They helped me entertain Hope and willingly gave up their cool water bottles that Hope was more interested in when she refused to drink her own.  The poor kid was barely eating (she actually has lost about a pound through this whole process), though she would yell "Wawa, wawa!" when she woke up in the middle of the night because she felt like a furnace. :(  So!  We were able to get a urine sample and they did some preliminary testing.  It came back negative, but they would be letting the culture overnight to see if anything grew in it.  If that didn't show anything, we'd be referred to the children's hospital for bloodwork and an xray to rule out pneumonia and to check her white count etc, just in case.  That made me nervous, but as Dr. E. said we had been patient with the fever for long enough, and she was miserable.  So home we went, and got through another crappy night. 
Wednesday morning I got a call from the doctor and was told that indeed the culture had grown rapidly and they definitely suspected a UTI.  They asked me to come back in and they would do a catheter on her to get more urine, and also give her a big shot of antibiotics to get the healing process started.  Not fun stuff, but necessary.
The whole staff was so sweet when we got there.  The front desk girls were apologizing to her the minute we walked in, and while Hope was not smiling and giving them the stink eye they said "I know baby, you give that stink eye, I'm so sorry."  They were the best. 
Our appointment was with our "regular" doctor, Dr. Silberman, so we reviewed everything, and his recommendation stood- and he has added a kidney ultrasound to the mix, just to be sure everything looks alright and it's just a random occurrence, and not something "wrong" with her kidneys.  I asked if the UTI came from me not wiping her good enough during diaper changes (though I do my best!), and he said not likely, it could be genetic or just random.
So on we went with the catheter procedure, which was heart wrenching.  Hope had already had a fever for 8/9 days at this point and she was already feeling crappy.  I had to hold her hands and listen to her screaming "Bye bye bye bye."  Thankfully the nurse was super fast about it.  Interesting finding though, when they did the initial screening with the second round of urine (sorry I'm saying urine a lot lol)- one of the preliminary tests that had come back negative on Tuesday afternoon was positive on Wednesday, suggesting the UTI wasn't as "old" as originally thought.
SO, the working theory has become that her inital fever was probably due to what she got from Hannah, and then she got slapped with the UTI.  Hope then endured a very strong shot of antibiotics to get the ball rolling and this infection (Which is actually called a kidney infection) on it's way out.  Also painful.  Poor kid fell asleep on me while we were waiting for the 15 minutes to be sure there was no allergic reaction.  She screamed bloody murder every time the nurse walked in to check her injection site, despite not being touched by the poor nurse. 
Wednesday night her temp got up to 103 again, though we had seen some glimmers of her perking up that afternoon.  Yesterday morning she woke up fever free PRAISE JESUS and took a decent nap yesterday morning!   I got a call from the doctor and was told "This is definitely 100% a UTI" based on the culture that had grown overnight.  So now she's on drugs for 10 days, and I am so thankful for these drugs.  Hopefully they won't cause a yeast infection, so if you are praying specifically, please pray for no issues with the antibiotics! 
Last night she tossed and turned a lot and didn't spend much of her night in her crib, but she woke up cool again this morning, thankfully.  Last night during dinner she ate a few bites and her siblings had her cracking up for the first time in about 10 days.  Excuse the potty talk in the video below, I allowed it because it made her laugh! 
So though she is not herself yet, she is fever free and we have a solution.  I am so thankful for our doctor group and their caring manner.  They truly love what they do, and it shows. 
Here's some pics of this week, and a couple videos.  She hasn't wanted put down, and has spent most of her time being held or in the carrier. 



Tuesday evening she perked up a bit after Motrin, wandered into our room, grabbed the remotes and started pointing them at the TV saying "Cookie, Elmo, yeah!"  

Trying to get her to eat a milkshake from Chickfila- she ate a few sips!  This was her doctor visit on Wednesday.




Pretty good depiction of the last 10 days


 This was yesterday- she wanted to play with Hannah, but was pretty tired.  AND yesterday afternoon eating!! Cheerios and watching Elmo. 

 Finally some smiles last night!

Dinner giggles

Another bright spot- Big kids wrestling one afternoon!






No comments:

Post a Comment