Wednesday, September 26, 2012

The other reason I cried on Monday

Monday was an incredibly difficult day.  Kamryn had to have four blood draws, each one to two hours apart.     The first draw she didn't react to until the phlebotomist started to move the needle inside her arm to get the blood out.  (I don't understand that.)  So he goes after her other arm. I don't cry during blood draws, this one I did.   With 3 more blood draws this was going to be more than anyone should have to take.  The second blood draw ended in the same results.  They went after her foot.  The next two blood draws are good, but in her other foot and painful.  Kamryn and I left the clinic exhausted.

But that is not the only reason I cried.  On Monday in between blood draws I went to see Hannah and Jennifer.  Jennifer wasn't there and I left her a message as she would be arriving later.  Kamryn and I went home.  We had been invited to watch the Seahawks game at a friends house and so we went.  Dinner was so good and the company was great.  But it was time to pack up and leave, we have boys to get to school, and Kamryn and mommy were tired.  We left about 8 minutes from the end of the game and listened to it on the way home.  In the last 8 seconds of the game the hearts of the fans stopped. Was Seattle going to be able to make another touchdown?  They did. (with a great deal of controversy) Those announcers were so excited and had no idea how the call was going to go. As the officials pondered the outcome, a little girl in Seattle was undergoing a heart transplant.  Little Hannah was getting her new heart. Hannah's heart was stopped, removed from her chest and she lay waiting for the new heart to arrive.  Her parents sat waiting for that official call, "The heart is in and beating."  Just as the Seahawk fans began to breath again so did Hannah's parents. Their little girl had her new heart, she was pink and beautiful and full of life. A life that was given to her by another family grieving for their child. It brought me to tears with so many memories of joy and sorrow.

Now Hannah's parents face the sometimes daunting task of caring for her. I have met Jennifer she is strong and faithful.  Transplant is a whole new ball game from cardiac failure. But it's a touchdown all the way.

Monday the ferryman made me cry...

Some of you know that Kamryn was feverish and had diarrhea several weeks ago.  I am happy to say she no longer has those issues.  The blood work that was done on the 12th when she was ill showed no signs of illness.  The blood work on the 19th did.  So Kamryn went on a medication called Valganciclovir.  She has taken the medication before and has done well on it.  However it is one of those medication you don't want to read the warning labels.  So she has to be monitored for drug levels.  On Thursday the week before we discussed with the nurse a plan of action and decided we would have to be at clinic by 9 am Monday morning.  Of course this requires a ferry ride. Kamryn has a medical pass to get on the ferry as priority boarding. I don't usually need it on the Southworth side so I didn't use it last week to get on board.  However, on our return trip I couldn't find the pass.  ( It is always in the pink binder.)  Monday rolled around and I have forgotten to look for the pass.  The 7:55 am ferry would be cutting it to close, so we take the 6:40 ferry.  We leave in plenty of time to catch that ferry and arrive 10 minutes before it is to leave.  I go to pay for our ride and is informed the ferry is full.  Now what am I going to do? In desperation,  I blurt out she had a medical pass but I can't find it.  His reply, "We don't get much call for medical passes on this side."  To which I reply, "Yay you probably don't, she had a heart transplant."  He says, " That is a medical, SIGH...I'm going to trust you, I can see it in your face, you might want to find that medical pass."  He puts us on the ferry.  And I bawl like a baby.  In a world that seems cold and uncaring there are those few people who make life easier.  Thank you mister ferryman!

Wednesday, September 19, 2012

Extraordinary Day

Today was clinic.  On the ferry ride to Seattle I saw a car load of pirates.  I had no idea it was "talk like a pirate" day.  I would have like for Kamryn to have had her picture taken with them but the "germ thing" kept me from getting out of the car on the ferry.   Do ferry pirate wash their hands.  I don't think Jack Sparrow ever washed his hands.
On to clinic.  Kamryn has become more aware of her surroundings. She wasn't all to happy about having an Echo today.  She was quiet for a while and then wanted it to be over. Next was a weight check, she is 13 pounds 1 oz.  Last week while sick she had lost a few oz, but has gained them back.  The EKG was the next traumatic event for Kamryn.  She's not to fond of those sticky stickers.  A short evaluation from the dr and we were off to the lab.  Another not so happy place.  A bottle, diaper change and some love from mom mad it all good.  The nurse called later and told me Kamryn's BUN is high.  This effects her kidneys.
For a few months now I have been following the blog called "Hannahneedsaheart".  Today Kamryn and I met both Hannah and her mother Jennifer.  What an extraordinary woman.  It is amazing to see the strength given by God, to those who trust Him.  We share the unusual bond and I have found a friend for life.     Hannah is doing well she no longer is intubated. She has such beautiful blue eyes and a pretty smile.  Jennifer held Kamryn, cried and told me how she is encouraged by my sweet baby.
I met a woman several weeks ago that told me every time she nursed her baby she prayed for Kamryn.  I want to encourage you to "every time you..(buy a coffee, eat, change a diaper...)." you pray for Hannah.  As we all know prayer is what got my family through what seemed impossible.  Now we have a happy 9 month old who is 7 months post heart transplant.  Please pray for Hannah.  

Friday, September 14, 2012

The Princess and the Pee

This week no doctors appointments were scheduled we just needed some blood work.  On Wednesday Kamryn was running a low grade fever.  By  mid morning she had filled several diapers.  Not her normal MO.  In the world of babies this is nothing to fret about. I would have watched her for a few days and made my own call as to what was going on.  As the parent of a heart patient I chose to call the Dr just in case.  By the time the DR called back she had 3 more runny diapers, but the fever was gone.  I was told to monitor the fever and come in at 4:30 with Kamryn. Throughout the day her fevers fluctuated.

Kamryn has timed blood draws.  The medications she is on need to be monitored for potency between doses.  We went in for a blood draw at 1:00.  Drawing blood on a baby is not something everyone can do with ease.  The lady in the lab was not comfortable drawing her and asked us to wait for an hour.  Not something we could do.  I have been with Kamryn for every one of her blood draws and know that a heal poke works for the timed test.  I doesn't work for all of the test but we could get the timed test done on time and come back for the other tests later.  Long story short.  The phlebotomist that has drawn Kamryn before came off her lunch break and drew Kamryn's blood work.  One poke, one draw all done.  I trip to the pharmacy to pick up meds and off we go.

Between the blood draw and the Dr appointment Mark saw the Dentist.  He has sealants  HOOORRAAYY!

Back to the clinic for Kamryn's appointment.  I must tell you that my brain goes immediately to rejection.  I no longer jump around to the other possibilities of gastrointestinal issues or she's to hot and ate something that didn't agree.   The Dr. was great, he is good at listening and spending the time to reassure this sometimes crazed parent.  She probably had a stomach bug and would just need to be monitored.  Two days later she no longer has a fever or overly filled diapers.

Now to the title of this blog.  Last night after sleeping for several hours Kamryn wakes up screaming.  She is not easily comforted, doesn't want her bottle, or to lay down. She is such a content baby this was a little alarming.   Normally for her this means a bubble in her tummy. I gave her gas drops. (In know they may not work. But desperation is desperation.) I changed her diaper in the semi dark, it was just wet.  She continues to cry and be uncomfortable.  At 12:30 in the morning this is not conducive to a husband who gets up and goes to work.  Kamryn and I decided to take it down stairs.  With another diaper change, and slathered in diaper cream she went to sleep on the couch.  Me too.  A couple hours later, she screams again, needs another diaper change and goes to sleep. We repeated this throughout the night.  Not until morning, okay 7:30am do I realize she has a little diaper rash.  My sweet little princess can't sleep with a little pee. 

Monday, September 10, 2012

These are pictures from our trip to an 80th birthday party in Medford.  Kamryn got to "eat" her first french fry.  The other picture is of her sitting on a bed in our hotel room.  I think Kristopher took that one.

9 months old today!

Today Kamryn  is nine months old.  She is growing and developing so fast.  Her sweet personality and easy going spirit makes it easy to take places.  Yesterday she watched her big sister play soccer.  Now everyone's in school and Kamryn and I are at home.  It's quiet, but we are slowing developing a routine.  I think she misses her brothers and sister, as soon as they come home she is bouncing and smiling.  We are continuing with the OT/PT for Kamryn.  Next week is clinic, Kamryn will have an echo and some blood work.  What a happy, healthy little girl we have.   Every day is a delight and in line with God's plan.