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.

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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.