Update....of sorts.

Sarah had her cath on Monday.  She did well, better than expected.  The anesthesia was a little rough on her but nothing that wasn't too intolerable.  At this point, we are not going to Stanford any time too soon.  We have ways to manage her medically for now.

We are trying to get our life in some semblance from the past six weeks of craziness.  I will update the blog better when I am able.

Thanks everyone for the prayer, support and love.  We thrived on it all and couldn't have asked for more!

Time.

We are slowly preparing for Monday.  I find myself dawdling and not doing what needs to be done.  I know the reason behind the procrastination.  I realize that I can't possibly do what I want to do- stop time.  I've been on a mission to stop time. It didn't work. Monday is now less than 48 hours away.

I will try to post the outcome of her cardiac cath on Monday.  The plan is that she will be discharged on Monday night after recovering.  We will know on Monday if her heart is the cause or contributor for her recent spiral in health.

Prayers requested.

We are selfishly asking for more prayers for Sarah as her cardiac cath date was rescheduled to Monday, January 3rd- a week from today. I know that she is in the skilled hands of her cardiologist and the ever loving hands of God but the fear remains more than ever for me.

We are hoping for answers and resolution to all that ails her and remain hopeful for the positive outcomes.

Blessings.

Today has been a day of mixed blessings.  Sarah had an appointment with her pediatrician to evaluate her progress since discharge. He was not all too happy that her temps remain elevated and energy level decreased.  On examination, he heard concerning lung sounds on her left side of her chest.  A chest x-ray revealed a large pneumonia in her left lung.  Thankfully, she is tolerating the pneumonia with no increased work of breathing or need for oxygen.

The treatment plan is for intravenous antibiotics for two to three days and then oral antibiotics. Until then, we will go daily to the Pediatric floor and she will receive her daily dose of antibiotic and go home.  However, treatment changes if she has a positive blood culture or the fevers remain.  Luckily, for now, we are home.  A place that we desperately need to be for the holiday ....and for every day after.

When Sarah and I came home, we were greeted with "Christmas."  It was a beautiful sight to behold.  My department at work provided us with filled stockings, toys and clothes for the girls, gift certificates for the family and toiletries.  They are truly amazing people and we love them with all of our heart for thinking of us during this time.  We especially are in awe that they chose our family  when there are so many more families in greater need than us.

  The thoughts and love that you have shared with us and doing this for us is incomprehensible.  Thank you my friends.  Thank you.

We have a date.

Sarah's cardiac catheterization is scheduled.  We travel to Boise on January 20th, her cath is on the 21st and we stay until our brave girl is ready to come home to us.  We could tentatively go earlier that week on the 17th but we have to wait on the ruling of the schedule for the lab on that day. This,of course, is barring any more "drama" from Sarah in the next few weeks.  If she becomes heart sick or generally deteriorates faster, our trip to Boise will be expedited and she will have her procedure done sooner.

This in hopes of answers to why our little bug is doing so poorly in life.  A bit of me still hopes that it is discovered that her heart is not the reason for all of this illness and just bad luck   We've had 'bad luck' in the years passed and have prevailed. Unfortunately, my educated being tells me that I am so wrong.  So completely wrong.  Lord, how I wish that I was wrong..

I'm scared. I'm worried.  I'm terrified. I've never felt fear like this before in my life.  I wish this on no one.

Since we came home, Sarah has spent her days on the couch alternating between sleep and watching cartoons.  Unfortunately, more sleep than cartoons.  Her color can be best described as pale to almost gray.  She is oozing blood from her mouth and from around her feeding tube. Her fevers continue to be 101 to almost 104.  Tylenol and an occasional Ibuprofen are mainstays on the kitchen counter now.  Occasionally, she'll muster enough energy to cough but then quickly goes back to sleep.

I'm terrified.

Blessed.

Ten days. This is the record for Sarah for being out of the hospital in the last three months.  She was admitted again on Tuesday night with a temperature of 103.  The immediacy of admission stemmed from Sarah having an implanted central intravenous line along with a host of other implanted devices and medical risks.

The usual suspects of septicemia and  infectious endocarditis were ruled with this admission and fortunately, she was diagnosed with a simple virus.  A virus that has taken its toll on her.  No surprise really but hard to watch for so many reasons. It's just so difficult to watch your vibrant girl melt  into a puddle because of a temperature, even a low grade.

We are home now. Our Christmas tree is up.  Our stockings are still in boxes and I can't begin to tell you what Santa is bringing our family on Saturday.  The most important things though about this Christmas is that I have so much more than ever in my life than ever before.  I have my Sarah, my girls, my Luke and more love and prayers from dear friends and family than one person should ever have in life. For this, I am truly grateful and blessed.

Big sigh.

Today the cardiologist added a new medication to her regime. Lasix.  There are a few reasons that this was added: Sarah went to her pediatrician  today for a discharge follow up appointment.  In almost three weeks time, Sarah has gained two pounds, presumably from fluid.  She is also more mottled than before, "doesn't have knuckles" (swollen) and has steadily looked worse since we came home.

It was explained to us in detail that the Lasix will not be the save all for her.  It is a temporary measure by which we are buying time for final resolution.  The course of treatment will be approximately two weeks and will evaluated then for its work.  In the meantime, the possibility is more than likely to have a cardiac cath performed before the year ends.  With this procedure and with her next open heart surgery, Sarah has a high probability of losing her battle with congenital heart disease.

A truth that scares me to no end. I can't imagine our life without her little smiling face and loving ways.  She has brought so much to our family as our daughter.  One of my hopes in this world is that we have brought to her all of the love, understanding, caring and rejoicing in her life that she's ever needed from her Mommy and Daddy.  For if we have, we have succeeded more in life any could possibly in one lifetime.

We love you baby girl.  Please stay a while longer.

Playtime dreams.

My poor sweet, brave girl.  She's been playing on the couch with her dolly today and she is completely exhausted.  Hopefully, she is dreaming about healing, being stronger, love and our sweet family.  Sweet dreams my brave girl.  We love you.

Home again.

Sarah was discharged from the hospital yesterday afternoon.  It was, yet, another tumultuous admission for her. A lot of consultants, differing opinions and many changes in her daily regimes.  The goal of this discharge was simply put by a specialist as a "duct tape" repair until her next open heart surgery.

When she was admitted to our local hospital, Sarah was dehydrated.  She hadn't been able to tolerate any tube feedings for almost 6 hours and was only able to absorb an ounce of Pedialyte per hour for the past almost 24.  Her urine output was greatly decreased as well, not to be unexpected.

The day and night of admission seemed never ending. It was so hard to see her in such turmoil and distress and worse, not to be able to do much for her. She would wake only to retch and to be overall, miserable.  The night brought illness that she hadn't had for years and that proved to scare me, the nursing staff and physician on call. 

Sarah started having frank blood out of her stomach.  Her oxygen levels were decreasing. A simple touch and she would retch.  She didn't have any urine output despite a large volume of saline and continuous intravenous fluids. Her stomach wasn't absorbing anything .  Her little body was swelling.  All of these horrible things were happening at lightening speed to my brave, sweet girl and I couldn't do a damn thing for her.  I couldn't make it stop.

---

The nursing staff and I were in constant contact with the physician that night.  We were at a loss.  A medication had to be tried to try and coat her stomach lining, an effort to make the bleeding stop.  The thought on everyone's mind was if she wasn't absorbing anything in her stomach, how would she be able to tolerate this medicine that could potentially save her life?  It had to be tried according to the specialists in Boise or she would have to be transferred by helicopter for surgery to make the bleeding stop. Luckily, the bleeding slowed and she started producing more coffee ground drainage than frank blood.

The next morning, Sarah gained almost 2 pounds of fluid.  She still hadn't urinated nearly enough for the amount of fluids that she was given via intravenous.  She still retched with even the slightest stimulation.  Her little face was so swollen. Not good.  Not good at all.

Ultimately, the decision was made to transfer Sarah to Boise that day after consultation with her pediatric gastroenterologist  and cardiologist.  Theories were placed to us that her heart was failing to perfuse her gastrointestinal tract and possibly was in  failure.  This would explain why she wasn't absorbing anything, her weight gain and need for Lasix to urinate despite intravenous fluids.  All scary explanations.

When we were in Boise, Sarah continued with her gastroparesis and need for Lasix.  Again, we had numerous consultations with pediatric specialists who again gave their opinions, treatment options and somber resolutions.  With testing done, we now know that she no longer has a blood clot in her right axillary vein.  Rather, she now has clots in her left subclavian  and internal jugular  veins.  At this point, no need for the surgery that was scheduled for later this week.  Thankfully. We also know that she has an acorn size kidney and the other is twice the size of the norm.  Not truly new findings but happily, nothing to be truly worried about at this point. There were conversations regarding scopes and a cardiac cath.  All to hopefully obtain definitive answers to her current ails.

She was there for an additional 5 days with resulting changes in her tube feedings and  feeding regimen.  The ultimate answer for this hospitalization (and many in the future), I fear, is to perform a a cardiac cath in Boise.  Certainly then we would have results but the question truly is, do we want those results?  Results that would ultimately send us to Stanford for her heart surgery which she isn't strong enough to endure.

My brave Sarah girl- rest well, stay healthy and be happy.

Much needed.

I'm glad that I can surround myself with such great people that I can call my friends.

"Here when you need anything!"

"...remember every second is about all she has overcome.  I remember all the poor predicted outcomes for Scotty ... finally we realized nobody ever told him... trust in Sarah's spirit, she will guide you and you can't help but look at her and smile. Be the strong Mom but give yourself a chance to be Kim."

"Kim......words can't express to you how terribly sad I am for you and your family. I will Pray for comfort most of all, because sometimes God's plans aren't the ones we want for ourselves. We love you and are here for you always."

"Our thoughts and prayers are with Sarah, you and your family. I know that you have faith, and with that faith it will help and comfort you. Stay strong, cry as much as you need, scream as loud as you need and believe in your faith. You are a strong mom and this is making you stronger"

"I'm praying for you every day. I hope you can feel the love we're all sending."

  Thank you.