Cath Lab

Yesterday, we were at Seattle Children's Hospital for Kamryn's Cath Lab.   This is a yearly procedure that measures pressure, looks for rejection and over all health of her heart.  It is a long day full of waiting, entertaining a 2 year old, and speaking to multiple doctors, nurses and staff. The hard part,  letting a very sleepy, pre medicated baby out of my arms and into the arms of the anesthesiologist.  Prior to her departure Teed Nail prayed for all those involved in Kamryn's procedure. 

We then went to have breakfast with Teed.  The pager around my neck reminded me of the seemingly  unending days when the hospital was our home. It felt heavy and burdensome.  Then it rang,  I just about jumped out of my own skin.  Not because it startled me, but because of the memories of a day just 2 year ago.  The day my sweet baby got her new heart.  That day the pager would ring when the surgeons wanted to update the family on the progress during surgery.   Yesterday, as we reached the surgery desk, we were greeted by a smiling Doctor.  The surgery went very well.  Her heart looks good, the pressures have improved and he was excited to tell us the news. 

Later the pager went off again,  the nurse wanted the mom.  Kamryn was in tears, disoriented and just plan mad.  The little hoarse "hold you"  just about broke my heart.  But I couldn't hold her.  She needed to lay flat for 4 hours after the procedure.  So I laid across her bed, singing in her ear, holding her and stroking her little head.  She calmed and was ready for the ECHO, EKG and Dr Law. 

Kamryn's condition prior to the heart transplant is a rare form of cardiomyopathy. Non compaction is not a well studied or understood disease.  Kamryn has gross motor issues.  Dr. Law wants us to pursue more aggressively the cause of her delay.  Kamryn doesn't jump, go up or down stairs, or run and she falls frequently.  We will be seeing a neurologist and an orthopedist. 

Keeping a 2 year old quiet and unmoving for 4 hours proved difficult.  We resorted to almost 3 hours of Blues Clues, a dark room and lots of crackers.  The dose of Tylenol helped too.

Today Kamryn is back to her chipper little self, with a lot of clinging. We have nothing better to do today, but cuddle and watch some TV.  Maybe a nap too.  


Remember... our Blood drive

https://schedule.psbc.org/DonorPortal/grouplanding.aspx?s=4086


Thank you for your prayers. 

Psalms 111 1-4
Praise the Lord.^[b]

I will extol the Lord with all my heart
    in the council of the upright and in the assembly.

² Great are the works of the Lord;
    they are pondered by all who delight in them.
³ Glorious and majestic are his deeds,
    and his righteousness endures forever.
⁴ He has caused his wonders to be remembered;
    the Lord is gracious and compassionate.

Gifts (from January)

Welcome, I'm glad you stopped by. 


My blog posts have slowed down as our lives have sped up.  This month alone Kamryn has/had appointments, OT/PT, Doctor, Eye, blood work, and ENT. It has left us with only 4 days of "nothing scheduled" for the entire month.  If we aren't going to an appointment the phone is in my ear about an appointment, blood work, SSI, and medication refills.  Over all Kamryn is doing a great job of being two.  She is stretching her little wings and going to a class without mommy.  This is a big step for both of us really. 


Each person in Kamryn's life is providing her with a gift.  These gifts are of health, movement, site, hearing, and independence.  One of the gifts she received this month was the delivery of her medication.  A dear friend, working near one of the pharmacies we use, picked up the Rx and was able to deliver it to  us.  This gift saved me time, a trip and gas, Kamryn a car ride and a long nap vs. a short nap. 


While Kamryn was in the hospital waiting for her heart she received another gift.  With her hearts inability to efficiently pump blood and get oxygen throughout her body, a decision would be made to give her blood. After about 6 hours the blood would arrive and they would begin the 5 to 6 hour process of the transfusion. This small unit of blood would do miraculous things. It warmed her up, lowered her heart and respiration, the monitors on her head and kidneys would show improvement for oxygen saturation. Her color would improve a little, and she would begin to relax.  Her body didn't have to fight so hard.  This simple gift of blood gave her another moment, day and eventually a life time. 


I think of  a transfusion like this. 
Image your favorite cold weather drink.  Mine would be a cup of hot dark chocolate.  I hold that warm cup up to my face and feel the heat permeate my cold hands.  It's aroma fills my nose and senses with calm.  I give myself permission to sit and enjoy the flavor and aroma.   This simple cup of cocoa, gives me the gift of joy.


We are planning a Blood Drive with Puget Sound Blood bank for February 22, 2014.  You can sign up for this blood drive by using this site


https://schedule.psbc.org/DonorPortal/grouplanding.aspx?s=4086




Please consider giving someone the gift of blood through this Blood Drive. 


Thank you

Slightly more complicated

Kamryn has had several ear infections.  The month long antibiotics took its toll on her tummy, her sleep and weren't always effective.  Her primary Dr and an ENT both agreed that she would benefit from ventilation tubes in her ears.  Several questions were asked about her cardiac status and her reactions to anesthesia.  It is good to say both are stable.  With her Cath Lab coming up it was  thought  why not do the procedures at the same time.  She would only be put under once for both procedures.  Let's do it.....


Screech...Her Cath Lab is scheduled for February 4th.  This means referrals need to be made, Cardiac and ENT need to coordinate, an appointment for ENT needs to happen before the new procedure can be added and ...   endless phone calls, emails and prayer. 


Cath lab is a scary time for parents of heart patients.  There are endless things that can go wrong, or news that can devastate.  But it can also bring reassurance that there are no problems, no rejection, no needed medication changes.   For most patients, Seattle Children's Hospital follows rejection with an Echocardiogram. They reserve biopsy to once a year or when needed.


Currently, the plan is to wait for the referral and then work Kamryn in for and appointment with ENT.  This means her Cath Lab may be postponed.  I hope not.  I'm praying for all to go smoothly and for her to have the procedures on the current schedule. 


This has become slightly more complicated, but it's manageable.

Gifts LIttle and Big

Welcome, I'm glad you stopped by. 


My blog posts have slowed down as our lives have sped up.  This month alone Kamryn has/had appointments, OT/PT, Doctor, Eye, blood work, and ENT. It has left us with only 4 days of "nothing scheduled" for the entire month.  If we aren't going to an appointment the phone is in my ear about an appointment, blood work, SSI, and medication refills.  Over all Kamryn is doing a great job of being two.  She is stretching her little wings and going to a class without mommy.  This is a big step for both of us really. 


Each person in Kamryn's life is providing her with a gift.  These gifts are of health, movement, site, hearing, and independence.  One of the gifts she received this month was the delivery of her medication.  A dear friend, working near one of the pharmacies we use, picked up the Rx and was able to deliver it to  us.  This gift saved me time, a trip and gas, Kamryn a car ride and a long nap vs. a short nap. 


While Kamryn was in the hospital waiting for her heart she received another gift.  With her hearts inability to efficiently pump blood and get oxygen throughout her body, a decision would be made to give her blood. After about 6 hours the blood would arrive and they would begin the 5 to 6 hour process of the transfusion. This small unit of blood would do miraculous things. It warmed her up, lowered her heart and respiration, the monitors on her head and kidneys would show improvement for oxygen saturation. Her color would improve a little, and she would begin to relax.  Her body didn't have to fight so hard.  This simple gift of blood gave her another moment, day and eventually a life time. 


I think of  a transfusion like this. 
Image your favorite cold weather drink.  Mine would be a cup of hot dark chocolate.  I hold that warm cup up to my face and feel the heat permeate my cold hands.  It's aroma fills my nose and senses with calm.  I give myself permission to sit and enjoy the flavor and aroma.   This simple cup of cocoa, gives me the gift of joy.


We are planning a Blood Drive with Puget Sound Blood bank for February 22, 2014.  You can sign up for this blood drive by using this site


https://schedule.psbc.org/DonorPortal/grouplanding.aspx?s=4086




Please consider giving someone the gift of blood through this Blood Drive. 


Thank you


Kelli

A big girl now!

Kamryn turned 2 today.  Her twoness is showing it's ugly, but cute head.  She stomps her little feet, yells and sometimes hits.  When she doesn't get her own way, watch out.  She is quite able to tell you what she wants and doesn't want.  At times it's hard to hide the smile on my face as she bursts into a foot stomping, yelling, full on temper tantrum. 

Last year we had a big birthday party for her. This year is was a small family party.  And yet the celebration of her life is bigger and more impressive.  She is now almost 2 years post transplant.  Where has the time gone?  Her last visit to the Cardiologist was full of great news.  There are no concerns from a cardiac standpoint. 

February 17th marks her 2 year post transplant.  We would like to do something special for that anniversary.  This year we will be doing a blood drive sometime that month.  I need 25 volunteers, before I can talk to the blood bank.  Please send me a message through face book or on this site.  If you're not in the area please find a blood bank to donate to.  Date and times will be announced soon.


 For You, O Lord, have made me glad by what You have done, I will sing for joy at the works of Your hands.   Psalm 92:3-5

Thankgiving Complacency!

I've found myself to be complacent this Thanksgiving. Kamryn is doing well, we are all together in one place and most things are going good.  I've taken for granted the "smooth road" we are now on.

The last fee weeks have been difficult and have reminded me how far we've come.  The death of a cardiac baby at Children's in Seattle gave me reason to cry and hold my children tighter.  Two heart transplant in the same hospital also gave me reason to cry, but with tears of joy.  And again I held my children tighter.  With the announcement of  every transplant my mind and body raced back to memory of February 17, 2012.  Joy and sorrow filled me at the same time, hope welled as I tried to push the fear back down. Lives were being changed forever. 

My complacency had lead me to stop Fully Relying on God.  That darn, I can fix this myself, had reared its ugly head.  At Kamryn's last appointment  her Dr stated, "from a cardiac stand point she's fine".  A good reminder that I'm not the one that made that work. I was not involve in the creation of the heart Kamryn now has beating in her chest.  God designed, orchestrated and ultimately made the decision where that heart was to go.

There are several stories hitting the web about moms listening to the heart of their loved one transplanted into another.    The only transplantable organ you can actually hear, is the one I listen to everyday.  It's gone the complacency,  these last few weeks have hit hard. Reminding me to be thankful for a long, bumpy, seaming impossible road that lead us to be, all together in one place. For that I'm Thankful.

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