Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.


Friday, July 24, 2015

Hospital in July

Its been a long time since we've had an emergency hospital visit with Claire.  It seemed like she used to have these random things pop up all the time where she ended up in the hospital.  Well I guess that means it was time again.

On Sunday Claire said she was woken up by Mabel…and she was still super tired and ornery.  She fell back asleep on the love sac and we didn't think much of it.  Well, as the day went on, we started thinking more of it.  She soon started acting quite miserable, was complaining of her stomach and head hurting, and starting feeling warm and feverish.  She never got a fever until bed time, but it came down with Tylenol.  She slept good through the night, but when she still wasn't feeling better by morning time, I decided we needed to take her in to be seen.  The pediatrician checked her out and didn't see anything obviously wrong off the bad…ears, throat, and lungs were all clear.  A quick urine analysis did, however, show white cells and blood in the urine.  He started her on an oral antibiotic and said he'd be in touch with our kidney and liver doctors and they would call us after seeing the results of the blood work later that night.  Unfortunately, the kidney doctor did call later monday night and said Claire's creatine did increase to 1.1 while her normal is .8.  That's not a good sign.  So she asked that we bring Claire in that night for IV fluids and further testing.

Jared took her in that night and she was admitted through the ER.  It was obviously a long night for them as they got the IV going (MUCH to Claire's dismay.  She has some serious hate issues agains IV's ) and did more blood work / consolations.  Lucy and I switched Jared out in the morning, Benson and Mabel went to a friends house to play for the day, and Jared headed off to work.  (poor guy.  up most the night in the hospital and then had a full day of work ahead.)  Thankfully, Claire's creatine came back down to her normal .8.  That gave all of us a sigh of relief.  But she was still having fevers and not feeling all the way well.  The docs wanted to keep her one more night so we could see what the blood and urine cultures showed on Wednesday.

Claire loved playing in their craft room while we were there.  Lucy, Claire and I spent many hours in the day there doing glitter, coloring, drawing, making a picture frame, and for Lucy, sleeping in my arms that felt like they were going to fall off after keeping her in the same position for that long!!  It was a nice diversion for Claire and got her mind off the "terrible" IV coming out of her arm.

We did the same routine Tuesday night with Jared staying the night.  The next morning, Claire was definitely feel much better and hadn't had any fevers through the night.  Later that afternoon, they found that although her blood cultures were still all negative, her urine culture did show a bacteria growing…causing a UTI.  It also showed the BK virus in her urine, but a relatively small amount of it, 2,700 copies, that isn't of concern at the time.  They found an oral antibiotic that would treat her UTI and got her ready for discharge.  Yeah!  We were all ready to be home all together again.  Trying to balance 4 children while one is in the hospital is not the easiest thing!  But we made it work just great.

Claire will do blood work again on Monday just to followup that everything is back to normal again.  Especially because we're headed out of town on Tuesday to spend time with family for a little bit!  Thankfully this happened this week and not next when were out of town and away from our doctors!

But so I could kill 3 birds with one stone, while Claire was in the hospital, we got Lucy's blood work done for the month and Bensons urine tests as well!  I love "multitasking" and getting things done in the simplest way possible!  They let Claire walk around the hospital with Lucy and I as Lucy did her blood work and BOY oH bOY was Lucy ever a champ at blood work!!!  She seriously let out one little "yelp" for about two seconds right when they put the needle in and then was quiet the rest of the time!!  It was amazing.  Claire was most shocked of all as she watched her little sister do blood work without any struggle, tears, or trauma!  Claire said, "She didn't even have the numbing cream that I use when I do blood work!!  How did you do that, Lucy?!?  I would have been freaking out!!!"  It was quite amazing.  And a nice sigh of relief to have that done again for the month without much trauma.  So glad they got the vein the first time.  That's always my fear is when they have to do it again!  But it was all good.  I don't have results back yet on her blood.  Soon though.  

So now were home again and catching up on some sleep, laundry, and cleaning.  I took Benson and Claire school supply shopping last night and they had a ball picking out their academic goodies.  This coming year will be the fist that I won't have a homeschooler.  Claire has decided she wants to try out public school, and I'm okay with that.   I plan on having a good relationship with her teacher to make sure her medical needs are understood.  Mabel will do a little preschool twice a week.  I'm looking forward to a great school year coming up!

Claire is mad at that IV in her arm.  Lucy is happy at the stuffed animal in her's!


Claire looking at Lucy to make her laugh.  What a Beautiful girl. 


Taking Lucy to go to blood work.  Lucy had just finished blood work in the picture below (notice the skin-colored wrap around her arm)…but she's still as happy as she was on the way there!  



Working on a glitter project.


And just because she's cute!!  I had a lady stop me in the library yesterday and tell me that Lucy was the most beautiful baby she's seen!  She said her facial features were absolutely perfect.  I agree!  She brings such joy to our family.  

2 comments:

~adelle said...

MAN! I still don't know how you do it all. You guys are seriously amazing. So glad everything turned out ok and nothing toooooo serious popped up!

Unknown said...

hope all is ok with you guys. prayers sent