Sunday, March 20, 2016


It's been another crazy day or two.  I ended up having to take Shelbie back to the ER Friday night.  This infection and hives are growing exponentially.  I have never seen anything like it before.  By midnight on Friday, the decision was made to admit her.

I was having a really hard time.  They sent her for x-rays and a 'shadow' showed up that made the radiologist wonder if something like MRSA was setting in.  That was the defining moment when we all knew being at home would be a mistake.  I was really anxious about another x ray, more radiation. I was also really worried that all the treatment they were suggesting was going to make whatever she had going on, go crazy and run wild in her body.

This morning, we met with the Hospitalist.  I love him!  He is the epitome of compassion.  Dr. Bates was wonderful and patient as I brought him up to speed on her history.  I asked him about doing more harm with all the things we were doing to try to slow this infection down.  He said it was a very good question and one that he was concerned about as well.  He said, "If she has cancer, then there are definitely things that can aggravate that so I am going to contact your team at Huntsman's and we will fine tune our plan."  He also said he would see if Pathology was back yet.

So, the plan is, they have her on three different antibiotics, a probiotic, a morphine pump, IV Benedryl,  IV Pepsid, IV Phenergan, Zofran, Toradol.   Still...the hives are spreading along with the cellulitis.

The night was long and exhausting.  Shelbie was up all night in pain and discomfort. By mid morning, things got out of hand.  She was extremely sick.  Right now, she can hardly walk due to the swelling and pain so it was a chore to get her from the hospital bed to the bathroom.  For over an hour, she cried in pain, nausea and vomiting.  After a while, she fell to the floor and just laid there on the cold tile beside the toilet shaking.  The nurse and I tried to get her up and back to bed but the pain was too much.  I haven't slept since Thursday so it all became too much.  The nurse had left to call the doctor and I went out to get a couple of warm blankets to put under her head and cover her up.

While I waited at the nurse's station, a nurse came by to see how we were doing.  I told her things weren't good.  She said, "Let me go in and see if I can help her."

This nurse went in to the bathroom and sat cross legged on the floor beside Shelbie and stroked her hair.  Shelbie was sobbing and saying that she just didn't want to fight anymore, she wanted to die.
I couldn't stand it.  I lost it and ran out of the room and fell onto the counter outside her room and cried myself.  Another nurse came and put her arm around me and just let me cry.  When I pulled it together, I went back into the bathroom and that sweet nurse was crying and while speaking softly to Shelbie, telling her that she could do this.  She could keep fighting.  It was the sweetest moment I have ever seen.  Real compassion!  Outstanding love from the nurses today.

The three of us sat in the bathroom crying for another half hour before Shelbie thought she could make it back to her bed.  This extreme pain and nausea continued until about 2pm.  It was then that she finally fell asleep and things were under control.  Her dad and Sam came up and I went home to shower and change.  I've been able to get a 10 minute nap now and again but it's been a ridiculously long day.

Tonight things continue to get worse.  The doctor is expecting this to be the case.  We have a hunch that Shelbie is allergic to the surgical glue they used on her incision and that may be what is causing the hive situation.  The infection is a mystery but given that this girl is low on Neutrophils, has abnormal Lymphocytes, no B Cells and very few T Cells...there is nothing left to her immune system to fight this.

Her leg is starting to turn a dark grey around her incision.  They are watching her carefully and her doctor has made a couple of extra trips in to check on Shelbie and make sure she is as comfortable as possible. I so appreciate his care and attention as well.

Until you sit on a bathroom floor watching someone you love give up, there is a new depth to the words heartbroken.  This week has been a little too much.  I have serious concerns about what this coming week is going to bring.  We are suppose to be in Utah on Wednesday to get the results of the biopsy.  I am still torn on whether this is cancer or not.  Something is destroying her body and I have great fear about what the future holds for us.

I hate going into what is surely going to be a hard week, already feeling beaten down, exhausted and incredibly discouraged.  We have been strong for three months through this process and now we are tired.  It stands to reason that things are only going to get harder and harder...trials typically don't become easier.  Praying that my sweet girl can rest tonight and that tomorrow, things will be significantly improved.

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