Tuesday, February 11, 2014


Today Kamryn seemed off, her lack of bounce, her need to be held and her complete compliance were clues.  It could be her ears, or something else.  We are only 6 days out from Cath Lab, which went pretty good.  There is no sign of rejection, the arotic arch is growing both from the donor and the native side.  It's still miss shaped, but it's functioning correctly.  I am fully aware of how quickly a little one can go from good to bad. My choice is to always error on the side of caution and go with my gut.  So I made her and appointment for a potential ear infection.  

The appointment was an hour and a half from the time I made it.  As I hung up the phone, she vomited all over me.  After a quick shower for both of us, our second one today, her hands started turning blue, and her feed didn't turn pink immediately after touching them.  Her chest was pink and she looked fine. 

It the Dr office her oxygen saturation levels were low and her heart rate was high.  A different pulse ox and warm hands changed the sat readings and the heart rate.   The doctor then examined Kamryn.  As he listened to her heart, he heard a murmur. He asked me about it, I thought she did have one.  In one thousand healthy kids 800 could have murmurs.  60 of those could be from birth defects the rest are benign and more than likely will go away by the next visit.  Dr. F is an amazing Dr.  What he heard wasn't alarming to him.  We finished our talk and I took Kamryn home.  It wasn't until I got home that I realized I didn't know if Kamryn had a murmur before. So as every  heart mom does, I called her cardiologist.  There response was really are you sure, we need to call him. 

The Drs talked.  The murmur is in her pulmonary artery and not a concern.  The blue hands and low profusion is probably dehydration and I'm to follow her symptoms. 

As I said before her primary Dr is amazing.  He called me last night after work and talked with me for about 20 minutes.   With the procedure last week there could have been a possibility of endocarditis.  Invasive procedures sometime allow vegetation to grow in the heart, that creates symptoms such as murmurs, fevers and swelling. 

We are confident that Kamryn doesn't have endocarditis.  The murmur isn't in the right place, there are no fevers or swelling.  She is good.

There are times I feel guilty for pushing my child into an already crazy schedule.  Not this one.  The key is to go in prepared with observations, and be ready to defend those observations. 

Wednesday, February 5, 2014

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


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

Sunday, February 2, 2014

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


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

Thank you