Soon…But not yet.

Soon we will be packing up this room and loading into our car and making the long trek home…

But not yet.

Soon we will hopefully have answers for what has plagued our warrior princess for the past week…

But not yet.

Soon i will be able to hug my whole family all at once in our own home….

But not yet.

Soon there will be rest for our weary bodies and souls….

but not yet.

 

Rounds this morning were disheartening to say the least. I should have known based on the labs on the big ipad I run out to look out at every morning….things had done their typical trend in the wrong direction. Way too many red numbers (meaning her numbers were not in the right range). A very cranky Kendall asking for more medicine. A heartrate that beeped steadily higher all night while the breathing alarms went off with shocking regularity. A bag full of bright red urine hanging off the foot of her bed that i could see without even opening up the sleeping curtain. I heard various members of the team whispering outside her door, and knew the news was not “good”. i could pick up a few words here and there, enough to know that we were likely not going home today.

and sure enough on rounds, the attending doctor brought up that he was concerned enough about Kendall’s trends that he did not feel comfortable sending us home. i would take this information from VERY few people in this place. I would argue and stomp my feet and become overly sarcastic and essentially act like a five year old brat to get my way. But from him, his quiet demeanor speaking of a wisdom derived from years of watching kiddos like kendall do unpredictable things – I humbly accepted his proposal to stay at least one more day. But in the staying, to take further action. One thing I hate about “staying one more day” is when nothing is done. when its just “wait and see”. i do not “wait and see” very easily about ANYTHING in life. (I feel like there’s supposed to be some awesome lesson about God teaching me patience inserted here but i’m too impatient to try to figure out what that might be!)
the ONLY shred of sanity i have left about this situation is that at least today there will be ACTION. It still may not give us answers. We may be in no better of a place by tonight than we are right this second, but we will at least have tried. We’ve got to at least try.

Kendall’s body has rarely given us clues to the mysteries contained therein. she has caused much head-scratching and shoulder-shrugging in her almost 6 years on earth. Sometimes we just have to take our best guess and be ok with that as the best possible answer. We have always just tried to make things make as much sense as possible, using the resources we have available, and as long as she’s mostly staying the course, we are ok with that. We are happy with that. Sure there’s lots of stuff that isn’t “perfect”, but we’ve learned to live with it.  It’s part of why she “looks so good” on the outside – we just don’t make a huge deal out of little stuff. We’d be forever in a doctors office or living here in the hospital!

but right now – especially after the harrowing illness she battled the last two weeks – her body is trying to tell us something. and we aren’t really sure what.  She looks exhausted, tired, worn down, and just downright “sick” today.

Maybe it’s one of those times where her body is just more tired than we realize, and she needed some of the supports we’ve pulled away for a little bit longer. Maybe she’s just going to take longer to recover from this fungemia than we thought. Maybe it really IS pancreatitis on top of all of that and it’s just throwing her for a loop beyond any she’s dealt with before.

in any case – she will be getting another in-depth CT scan very soon. We are sending cultures of everything we can culture and will very likely be tanking her up with a blood transfusion to replace the blood she continues to lose from her gut and kidneys. Her need for the pain meds via IV is not being debated anymore so we are able to stay on top of that better to at least keep her comfortable.
I know so many of you have been SO faithful to pray with us and for us throughout this entire crazy journey. Please keep the prayers going over the next few hours – that if there is something to be found that the doctors will see it, will know what it is, will know how we can best treat it. And that if there is nothing to be found, that the team has a sense of peace about what supports she may need added back in to help her finish healing from the fungemia (the yeast infection in her blood that is why we first came to the hospital).
Please pray for the hearts of the other three K’s at home. We were all looking forward to a nice family dinner tonight thanks to some generous friends and gift cards. I know their little hearts endure so much when we are inpatient like this, and it kills me to not be there with them to reassure them that things WILL be ok, we will be home soon….just not yet.

i will update as soon as i know more.

which will hopefully be soon…

but not yet.

 

t