monday, december 3

i never really had a good opportunity to update after adali’s second surgery.  as you can see the goal between my last update and her surgery was to make her comfortable and occupy her however we could before surgery number 2.  the short version of how the surgery went is that it took longer than expected but it was successful.  what they thought was a 6mm stone was actually a pooling of smaller stones that were difficult to remove given their small size.  the good news was, that instead of leaving the nephrology tube in and continuing to struggle managing her pain from it, the surgeon decided to remove the tube altogether and place an internal stent that hopefully would be more comfortable for her.  she woke up in much less pain and after remedying some minor discomfort from the catheter being in and out a few times she was acting and feeling much more like her old self by late that night.  she even complained of being hungry which was a relief as i was starting to get worried that she hadn’t eaten much more than some fruit loops for several days.

that night she slept great {read: we finally had a private room} and woke up ready to get out of there!  i knew we were ready to go home when she actually wanted to go play in the playroom; something that until that final day sounded good in theory but never worked out well due to her pain level.  once the surgeon made his rounds and discharged us we were making plans for the rest of our day.  first thing on adali’s agenda…”give ames a biiiig hug!”  clearly we all know who her favorite is at this stage.  these two have a special bond and it’s so fun to watch.  don’t feel sorry for emry he could care less about anything but getting into trouble.

the first day home brought minor discomfort probably from her having to get used to the sensation of the internal stent, but since then we haven’t had and real issues until earlier this week.  

a few days ago adali began to complain of it burning while she peed.  j and i both attributed it to the stent and gave her some medicine to hopefully help relax her bladder.  by saturday night she was complaining every time she went to the bathroom and had spiked a fever.  we both knew we were most likely dealing with a UTI.  bad timing as it was the weekend and it wouldn’t be a quick trip the pediatricians office.  so off we went yesterday morning to the ER.  they did a urinalysis, and after a thorough exam determined it wasn’t related to the stent and sent us home on antibiotics while we wait the results from the culture.  just another odd step in this journey as she has been tested numerous times for UTI’s this year after finding the stone and everything came back normal.  

who knows what this infection means.  we certainly hope this isn’t a recurring issue.  for now we wait on the culture to find out for certain if it is actually an infection or not.  we also are waiting to hear back on the pathology of the actual stone removed.  that could hopefully give us some more answers and we get ready for adali’s third surgery in a few weeks to remove the internal stent.

i want to thank everyone who prayed, sent positive thoughts, cards, stickers and gifts to adali!  we all felt the love.  it certainly did not go unnoticed from adali either.  she mentioned several times that “she was a lucky girl.” we all feel lucky to have so many great friends and family members in our lives as we tackle these obstacles.  

thank you thank you thank you!!

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