Sunday, February 17, 2013

Today is heart day!

One year ago we heard the words, "the heart is in and beating"!  Kamryn had received her new heart.  Now a year later, we celebrated this day with family and friends sharing stories of faith and God's grace.  Listening to her heart everyday , I"m reminded of the dear family that gave us a gift no one else could give. We released a balloon, and thought about the family and how precious they are to us.  We have yet to met, or share stories, but that will come with time.  Kamryn, has a personality as big as heart that beats within her.   What a joy!

Saturday, February 16, 2013

One year ago

December 16th is a day I will always remember.  I got a call from Mikaela, she wasn't feeling well.  I made her an appointment with the doctor and intended to call during it.  I was in Seattle with Kamryn and couldn't go to Mikaela's appointment with her.  Spending time in the CICU with Kamryn had taught me to learn cues to when she was headed into a cardiac episode.  I saw the signs and knew what was coming even before blood work and heart monitors would indicate a change.  Later, that day I called Mikaela who was in tears at the Doctors office.  I spoke to the doctor who told me she wanted Mikaela to go to an emergency room to be evaluated further for the pain she was in.  It was possibly her appendix, the doctor didn't know.  A sick child in Seattle, another one in Port Orchard. Arrangements were made to get Mikaela to Mary Bridge in Tacoma.  I tried to get a hold of Mike, but he was in training and his phone was off.    So I called Teed Nail.  We made arrangements to meet so he could take me to Tacoma.  I walked out of Kamryn's hospital room, knowing how sick she was, and  headed to Tacoma, not knowing how sick Mikaela was..  Before I left the hospital I stopped at the nurses station and told the nurse, "I was tired of being in crisis mode, and to take care of my baby."  I left that hospital not knowing if I would have one or two children in the hospital by the end of the day.  In Tacoma at Mary Bridge my dear sister in law Elizabeth and Mikaela's boyfriend Tyler sat with her as she lay waiting for me to arrive.  I talked to Mike finally and he decided to stay in Seattle.  I would keep him updated.  I arrived in Tacoma about an hour later to find Mikaela in the very room where Kamryn was when we first were admitted to the ER. Memorys flooded my head.  Mikaela was in severe pain and needed several tests, a CT scan, ultrasound and some blood work. After hours and hours, those tests found nothing.  There was no known reason for Mikaela's pain.  She had been given pain medication, and then instructions and discharged to go home.  Elizabeth and I took Mikaela to Grammy's house, I put her in bed and gave Grammy the instructions from the doctor. With full knowledge that Mikaela was in good hands, I left, got my car and drove back to Seattle arriving there at about 2 am December 17th.  Kamryn was asleep and the nurse updated me on her care. We talked a little about Mikaela and I went to bed.  At some point that night they had stopped the feeding tube for Kamryn.  I woke up that February 17th around 8 am to hear Jason say, "We have a heart for Kamryn."

John 14:27 - 27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Wednesday, February 13, 2013


I found myself in the Doctors office with Kamryn today.  She's been running a low grade fever off and on since Monday.  It finally reached that magic number of 101.something that is the indication she should be seen.  I had a brief moment if feeling sorry for myself, when I sat down and thought about, if Kamryn were "normal". If she were normal, I wouldn't have to worry about her meds poisoning her because she had a fever and wasn't getting fluids.  If she were normal, I wouldn't have to worry about and elevated heart rate and respiration.  They would only be caused by the fever.  If she were normal, the flu or a cold would be just that, the flu or a cold. Of course the little girl that had the 101.something temp was happy and smiling by the end of the visit. I had given her tylenol.  Her previous wake for 20 minute take a nap for 20 minutes was in the past.  So a several tests are being run, and we will know more tomorrow about the mystery cause of the fevers. Right now she is sleeping.  She is as normal as she is ever going to get.  Me too!

Saturday, February 9, 2013

Preparations for Cath Lab

This last week I have been preparing Kamryn and myself for Cath Lab.  (Cath Lab is a procedure to biopsy the heart and measure its health.)  I have kept Kamryn mostly isolated so that she is healthy before and after the procedure.  She will also be isolated after the procedure to make sure that her immune system can handle the invasion.  I Googled the words Cath Lab and found myself watching a procedure on u-tube.  (not recommended)  In the past year, I have known about several children who have had complications and not survived the biopsy of their hearts. I have to remind myself that those children needed the biopsy because the Doctor thought they were in rejection.  Kamryn's biopsy is not because she is sick, but to establish a baseline for further testing.  
I am comforted by a blog post from another mom, reminding me God is in control.  She writes:

Do not look ahead to what may happen tomorrow. The same everlasting Father who cares for you today will take care of you tomorrow and every day. Either He will shield you from suffering or He will give you His unwavering strength that you may bear it. Be at peace, then, and set aside all anxious thoughts and worries. Francis de Sales
Now, I must figure out how to keep a 1 year old from moving for 4 hours after the procedure.  Because, God is in control of this and I am not.