Thursday, March 17, 2016

And another...

Another incredibly hard day today.

Last night, I ended up taking Shelbie to the ER at around 1am. It wasn't because she was asking to go.  She has been more than patient with things.  I keep saying, "Let's see how it is in an hour."  or "Let's wait until morning, I'm sure it will get better." And she believed me.  She trusted me.

Close to midnight, I had this strong impression that we shouldn't wait until morning to be seen. Even with strong impressions, I tend to err on the side of conservative because I've been conditioned by doctors who have made me feel like I made mountains out of molehills.  So, instead of always feeling like a 'frantic mother' even though I never act like one, I always wait things out longer than I should.

Honestly, this disease embarrasses me!  I avoid regular tests and check ups that specialists have advised me to do because I can't stand people thinking I drag my kids from one doctor to another just because I seemingly have nothing better to do and 'want' them to find something else wrong.  While I know this is the farthest thing from the truth, the judgments I have lived with have been painful.

My kids have a joke among the three of them, "Don't bother telling mom you feel sick, she won't do anything about it anyways." It's not a joke at all...sadly, it's true.  It is something I have struggled with forever.

This experience with Shelbie, if nothing else, has taught me that I really could care less anymore what anyone thinks of me.  People/Doctors can judge all they want about the way I have chosen to raise my kids and take care of this impossibly rare disease.  They don't live here.  They go home at the end of the day to their comfortable life. So, I grabbed my coat and went to let Shelbie know that it was time to go to the hospital.

With that rant over...

Shelbie has a very serious tissue infection called Cellulitis. In someone immune-compromised, it can be life threatening and move quickly.  The ER doc also felt that she had a build up of lymph fluid from the trauma sustained from the surgery.  He asked that we have a surgical consult today to see if the area needed to be drained.  He also thought there was bleeding deep in the tissue causing a hematoma. So, they were quick to start IV antibiotics, morphine, toradol, and phenergan to calm things down.  He was so good with her!  I really liked the ER doc.  Of course, we always have a good experience with the nurses there.  We were there most of the night.

This afternoon, we spent our time at the surgeon's office.  Dr. H is our family surgeon.  I know, not many families can say they have a family surgeon.  About two hours before we saw him, Shelbie broke out into hives...everywhere!  Huge welts.  They even covered her cellulitis and incision area, stomach, down her legs.  The poor thing is miserable and her leg is on fire. It really altered the way the cellulitis looked.

He did an ultrasound and she does have fluid building up but he thinks her body is trying to manage it on its own.  He explained that there are all these tiny branches of lymph tissue that drain into the larger one that was removed.  The ends of these lymph branches are open now and the fluid has nowhere to channel to so it just builds up.  The body needs to create a 'lymph seal' to stop the build up.  If it doesn't, then he will need to go back in and surgically close the ends of each little branch.  He feels like that is slowly starting to happen on its own.

We will see him again on Monday.  On top of everything, Shelbie is struggling with discomfort and pain and simply exhausted.  So, we wait.  We wait and see what happens next.

It's just another hard day.  That's all.  Just plain hard.


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