To start off...KYLIE IS OK! I don't want to scare anyone!!!
Last week when doing a routine exam the nurse accidentally tugged too hard on Kylie's IPC lead. This is what was surgically placed just inside her brain to read her inter cranial pressure. All week they were getting "off the wall" readings from the monitor. As of late last week the doctor told Josh and Karli that they were going to need to consult a doc in Houston because he had "NO IDEA" why her pressure was changing so drastically.
Yesterday they met at length with the doctor and discussed a couple of options...
- injecting some dye to see if the shunt was working properly (keep in mind this is her second shunt) IT HAD BETTER BE WORKING! :)
- taking out the IPC and basically inserting a new lead to start over
As you can imagine neither of these were very popular. They really wanted to have the procedure done, stay in the hospital while the monitor collected the data..then COME HOME with some answers about how to manage Kylie's condition and to try and return to some sort of normalcy. It appears that is not going to be an option.
When I heard this news I felt devastated for my sister and Josh but especially KYLIE. She has been such a trooper. She has gone through so much and to tell a child that they just laid in a hospital bed for 6 days and all the while the monitor was not working is not an easy task. So far all the major procedures she has gone through have had to be done twice.
I always try and find the good in every situation and for this one it would have to be that they didn't just send release her and send her to follow up with the specialist in Houston. I'm thankful that they (a nurse that has been a true angel to Kylie EVERY time she's been in the hospital) discovered the monitor was pulled out. Don't get me wrong, I know we have SO MUCH to be thankful for. Every time I go up to the hospital it doesn't take a few minutes to see that very clearly. My prayer is for strength for Ky, and her family and for answers and guidance for the doctors and nurses who are overseeing her care.
As soon as they make a decision today I'll update another post.
****QUICK UPDATE****
Karli called and told us that Kylie's kidney function has been majorly compromised due to the vancomycin (antibiotic that she is allergic to) she is still having to take.
-melissa callan
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