Kamryn's Happy Words!

For a few weeks now Kamryn has had fevers.  Not a continuous, high grade fever, but 99.-101 fevers spread over 3 weeks.  In the past few days she didn't want to eat, drank little and laid around.  All of my time has been, holding, cuddling, administering medication, temperature taking and heart rate monitoring.  I have been in touch with Cardiac and Peds Drs for the last few weeks.  I took Kamryn in to her Peds Dr on Tuesday, she was examined with no findings (nothing wrong).  Blood work was done and so we waited for results.  A test called the SED RATE was done.  It measures the inflammation in the body.  With Kamryn's immune suppression it  came back high.  One would think that immune suppressant would make the test false positive.  However, its just the opposite.  I makes the test look better, so a high result could a higher result on a general population person. This had her Dr concerned.  So Wednesday morning I call to talk with the Dr.  My gut instinct was to take her to Children's and run her through the emergency room to have her evaluated. Her lethargy, eating and drinking were worse.  So after a few conversation with several people it was decided to take Kamryn to Children's.
 
I usually have a bag packed, just in case.  I feel at times I'm crazy, for having it, but not in this case. We needed to catch a ferry in 20 minutes. (Praise the Lord my car actually made it there and back) We left around 3 and arrive at Children's by 5.

Children's ER knew we were coming.  Kamryn unfortunately wasn't able to enjoy her celebrity status, as she had another fever.   She was whisked away and into a clean sterile room. Transplant patients don't get  to spend much time in a waiting room. Information was exchanged, she was examined and then we wait.  She then had a chest xray and the process to for blood work started. 

A beautiful young NP came in to start that blood work.  By this time Kamryn is tired of being looked at and examined.  Kamyrn's veins are bad.  21 months of blood work have rendered them hard to draw on.  It didn't help that the day before she had 3 pokes for that blood work.  There really wasn't a vein accessible for blood work. But we tried. 

Kamryn has a dialogue.  She has heard these words for her entire life.  They are in no order: 
I'm sorry, good girl, good job, it's okay, I'm proud of you,  Yay Kamryn, hooray almost done.  They are sometimes mixed in with "okay mommy" and huge sighs. The NP while very experienced had never had a chronic child, with bad veins and a series of happy words.  As she pokes and fishes for the vein, Kamryn starts her dialogue.  Good girl, good job, I'm sorry ... all mixed with heavy sighs and tears.  She doesn't move, she doesn't resist she just lays there and takes it.  Her good nature is mixed with frustration at being so helplessness through out all of this.  But she is strong and I have learned a lot from her. 

Kamryn was released to go home last night from the ER.  She is on an antibiotic for something no one knows for sure is there. She is expected to get better in the next 48 hours.  But we all know what Kamryn time is like.  It may take longer.

 I will praise the Lord, who counsels me;
    even at night my heart instructs me.
⁸ I keep my eyes always on the Lord.
    With him at my right hand, I will not be shaken.

⁹ Therefore my heart is glad and my tongue rejoices;
    my body also will rest secure,

 

Psalms 16