Thank you from the PICU

Steven and I just wanted to send out a big thank you to all our friends and family that have been thinking of Adela.  She is looking better today.  She has been doing really well clearing the fluid out of her system over the last 24 hours.  The nurses have been able to tell a difference for the past few days, but it is now down enough that I can tell an obvious difference.  She is still receiving a variety of treatments/medicines and is still on the breathing machine.  They are hoping she will be strong enough to come off it tomorrow.  She is getting feisty and they have had to really up her meds to keep her relaxed and not fight the machines and tubes until her system is ready.

For those of you who have missed the saga up until this point, here is the whole story.  Well at least for this latest medical drama…

On Feb. 23 after she had been progressively lethargic for two weeks (and her feet began to swell) we took Adela to her pediatrician.  They took a urine sample and sent us home, we drove home and got a call to return to the kidney clinic at Duke.  When we got there they felt like her kidneys were functioning ok, took blood and again sent us home.  When we had arrived home they call us and told us to return to the ER this time.  Adela had dangerously low blood sugar.  We spent three days at Duke where they balanced her blood sugar and basically diagnosed her with nutritional deficiencies (no surprise with her allergies and feeding difficulties).  They sent us home under advisement to watch her blood sugar levels and aggressively pursue her feeding therapy.  We were to have a follow-up with her endocrinologist (hormone doctor) here at UNC because of a few small results and her known genetic issues.  Because of scheduling issues we had to make our own appointment, but were luckily able to get in on Mar. 4.  As soon as we walked in she was quite concerned and insistent that Adela get a G-tube to recover from the deficiencies.  On Friday Mar 6 Adela had her G-tube surgery and seemed to be recovering ok.  However on Sat evening they began giving her feedings and later that evening she began to throw-up and spit-up and this continued through out the evening.  On Sunday morning she seemed to be having problems getting enough oxygen and the nurse tried using the nose tubes, then a mask, then the bag type, at which point he very calmly had my mother-in-law press an orange button on the wall.  At which point about 30 people descended on our room and began to do various things to her (I couldn’t see through to her – which was probably a good thing). They intibated her and rushed her to the PICU.  About two hours later we were able to see her, and in our naive minds she seemed stable.  That evening we hung out in the waiting room and checked in on her occasionally (she was under heavy medication).  The next morning we were told the real deal – she was in acute liver failure, retaining almost all fluids, and they wouldn’t be surprised if her heart stopped in the next 24 hours because of the strain.  This was quite shocking and emotional as you might imagine – however Adela is a toughie and survived those hours and has slowly brought her numbers up.  She has had a large amount of blood products transfused as well as so many different medicines it makes my head spin.  She has had a liver biopsy and MRI which have narrowed down the cause but not completely yet.  She is still considered critically stable and is not considered out of the woods yet, but she is way better off then before.

Again please keep her in your thoughts and we will try to keep everyone updated.