Thursday, January 23, 2014

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.

Friday, January 17, 2014

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

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

Thank you