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

The dress

Kamryn was an honorary flower girl in her sisters wedding.  Kjerstin pick out a dress and we ordered it off Etsy.  The dress came and Kamryn tried it on.  This dress was not her favorite.  It itched, was fluffy and made her miserable.  We would try it on occasionally in order to get her use to it.  Our encouraging "so pretties" couldn't make her love the dress.  And then a brain storm happened. If she wore leggings and a sweater, just maybe we could get her to wear it for a short period of time.  So we tried it.  Kamryn began twirling around in her "pretty" dress and saying pretty.  We had conquered the unhappy toddler, or so we thought.
Fast forward to wedding day.  I have now spent the morning preparing and directing family member who helped with the set up for the wedding.  I have an hour to get ready myself.  Having parented girls already, I knew that Kamryn didn't need to get in her dress until right before the wedding.  So with 5 minutes to spare, she gets dressed.  I now have a hysterical, screaming baby on my hands, and a large concerned audience. We move to Bev's office where on the floor she gets her hair done and her shoes on.  Mike comes in and says, "It may not happen and that's okay."  Kamryn begins to calm down with the help of Auntie Beth and a squirt bottle.  Auntie knows when to put a little fun into an almost disastrous situation. 
Kamryn was able to walk down the isle in her sisters wedding without a hitch. 

(see picture above) 

It has begun...

Usually Fall is my favorite time of year.  The leaves begin to turn, the menus' are filled with comfort foods, and the children are back in school.  I was okay with the change, until....  I started hearing those sounds that now make me cringe and want to run.  The achoo, cough cough cough, sniffffff...  You've heard them too, the unmistakable sounds of  communicable diseases that summer seems to whisk away.

So for those of us who deal with children of compromised immune systems, please use caution when your out in public. Your child's immunizations keep my child from getting something that could kill her. Hand sanitizer, keeps those nasty germs at bay.  My boys and those who come to visit wash their hands when they come in my door.  I'm encouraging no mouth kissing with Kamryn.  When it takes her  a month to get rid of an illness, a little hand washing isn't much to ask.

Thank you for my little place on the soapbox! 

Easily forgotten

Two plus years ago I discovered I was pregnant with our 5 child.  I went from not being pregnant to 4 months pregnant in one day.  That beautiful baby was born without a hitch and we continued with our much fuller lives. And then.... you know the story.... you prayed and you know the outcome.

It's days like yesterday that bring me back to that night in the hospital.  The fear, anxiety and waiting can make a person nuts.  Everything has been going so well.  Kamryn is not a child you look at and say she's sick.  She's a happy, healthy 20 month old with an enormous vocabulary and a duck walk. Her past is easily forgotten and yet.

Yesterday we spent 4 plus hours in the Doctors office here in Port Orchard.  She has had some diarrhea and one episode of vomiting. Dehydration is an issue with Kamryn on a normal basis.  When she gets sick it can be worse.  For an already dry child to get more dry is not a good thing.  The medication takes an extreme toll on her kidneys on a good day.  Dehydration causes medication level to be over the top and possible kidney failure. They measure dehydration by weight loss in small children.  Kamryn had lost a 1lb, 5% of her body weight. This is significant for a little peewee.  The second visit to the Dr showed she'd lost a little more weight.  Before seeing her he was ready to send her for IV fluids at Mary Bridge.  Thanks to that big Aubrey personality the Dr was satisfied that she would not need IV fluids.  She was no longer sunken, and anemic looking. We will visit the Dr again today.  While her symptoms are still the same she is doing better.  The 6:30am wake up call of mommy, mommy was music to my ears.  While I didn't want to get up, we spent some quality time together in the am. 

Her follow up visit was reassuring.  The Dr is pleased at her progress with fluid intake. We will see the Dr again next week.  I think now mom and baby need a nap.   

Really!!

Yesterday, I watched a news blurb about a young man back east that wouldn't be getting a transplant because of "non compliance".  The news media spun a story of a teen boy with issues of unlawful behavior.  They spoke with the hospital whose board had denied transplant list placement.  The hospital is of course not able to release information on this particular case.  But the media didn't ask about the painstaking process the board must go through to be put on a transplant list. The rules are not only set down by the hospital but by the UNOS (United Network for Organ Sharing) board. A patient must be able to follow a strict  medication regiment, eat right, make and keep follow up appointments and lab work. They must also meet certain criteria related to quality of life, and ones psychosocial network.

The weight of how very important a decision this is, falls heavy on my heart. If this child was not ready for the difficulties surrounding a transplant, then it would be prudent to deny a placement on the list.  Most teenagers that I know have an invincible attitude.  They are unaware of their own mortality.  It would be difficult to get most teenagers to stop and take medication.  A young man who might have an issue with authority may not have the discipline to follow such a regimented life style.

As we prepared for Kamryn's  transplant, we were asked about our level of commitment to this new life style.  They ask these question not only to find out your level of commitment, but because the donated organ is so precious. If one can't commit to following the program, then the organ has gone to someone who may not consider it or its donor valuable. Thus deny someone else who needs the organ a chance at life. 

I'm pleased to say that this young man has  been put on the transplant list as of today.  While I'm disappointed in the media and their poor coverage of this issue, I'm happy for the family.  I pray that they will understand the gravity of what they will receive and its cost. 

Update on the walking

A week ago we saw PT about Kamryn's walking.  She was prescribed orthotics, which I ordered on Thursday.  They were shipped on Friday and arrived on Saturday.  I put them in her cute little handmedown Nikes from Kjerstin.  With her first step she started walking different.  Actually moving her ankles, it was amazing.  So this week she has been working up to wearing them about 4 to 5 hours a day.  The orthotics help her muscles start from a neutral place, (instead of a negative place) in order to help her move to a positive place in her walking.  Kamryn would get tired from walking  before, it was a lot of work for her to do. Now she is climbing and starting to run.  While she does get tired it's not as frequent. I find myself chasing her more, which might explain why my hip and my knee hurt today.

Walking

Kamryn went to Holly Ridge today for an evaluation on her walking.  In Uncle Charlie Combs' words, "She walks like a duck."  She doesn't move her ankles, and mostly moves at her hips and knees.  Most babies are flat footed, as they learn to balance and walk that changes and they develop arches.  Not only does Kamryn still have flat feet she also has low muscle tone.  She doesn't know how to stretch her muscles and bend her knee to step down off the stairs or stand on her tip toes. So her ankles don't rotate.  Most recently, like in the last 2 days, she has begun to walk backwards.  This is a skill she should have developed months ago.

At Holly Ridge Kamryn was given exercises and games to play to increase the muscle tone in her legs.  She will be getting some orthotics to help rotate her feet outward and start the rehabilitation process.  We will have an appointment in a couple weeks to see how she's doing.  It was nice to know I wasn't crazy and projecting issues onto Kamryn.  The PT was able to explain why Kamryn has the issues with her legs and feet, which are in line with not moving and not learning balance at an early age.  Just wait she'll be playing soccer at age 5, and running with the best of them.  Well okay maybe soccer, there is that crazy mom who will need to be convinced.