My son, Joshua, is the second eldest of my five boys. I have 15, 14, 12, 10 and 8 year old sons. What happened to Josh is obviously a parents worst nightmare and makes all the problems I thought I had seem like a joke. Josh has Trisomy 21 and was born with seizures, severe VSD and ASD. Having very little heart tissue, the doctors said he wouldn't survive the surgery he needed because at 45 days old he was a pound under birth weight. The doctors told me to take him home and enjoy him for whatever amount of time I had left with him. This obviously was unacceptable. I took him home and we sat (with him naked on a towel) on the sofa for weeks and weeks on end trying to get him to breastfeed and he finally did. He became strong and healthy. No seizures since he was an infant and the holes in his heart shocked his pediatrician when they closed on their own-no surgery-no meds.
Fast forward to more recently, almost 10 years later, he had sleep apnea and lots of trouble sleeping at night so it was recommended that he have his tonsils and/or adenoids removed which was done just this past Christmas Eve. He seemed to have been healing beautifully and back to normal. On New years eve he went for a visit with his father and by Thursday morning he called to tell me that Josh wasn't acting like himself. He had been lethargic and had slept almost all day Wednesday. Having been pretty fresh out of surgery, I didn't want to take any chances so I picked him up and took him to the ER at Providence Tarzana. He was admitted with a ruptured appendix and was ordered to treat with antibiotics for 5 days then be discharged and return in 6 weeks to remove the appendix. By Tuesday he was still very ill so they performed the appendectomy. It was after the surgery that it all went bad. He went into shock and multi organ system failure. With his lungs and kidneys failing, they moved him to the PICU. It was literally around the clock care. The nurse could hardly even sit to chart at the computer because he needed constant attention. He was intubated, chest tubed and put in a drug induced coma by Thursday morning and by Friday morning they decided to move him to CHLA. His blood vessels are all "leaky" and his white blood count has gone up from 36 to 54 in 2 days. His blood pressure and O2 levels are constantly dropping and he is on very high doses of heart meds. He is intubated and on an oscillator which is doing 100% of respirations with the help of nitric oxide, fevers still come and go, infection is still high, lungs are still not working, kidneys have begun to recovery and urine output is good, he has a chest tube, monitor in his femoral artery, picc line, intra jugular port in his neck, leads all over the place and he is very swollen. At rounds this morning the drs said it seems like there has been some slight improvement but very very small and would take him a very long time to recover. Then he said that he didn't want to give us any false hope. All we can hope for right now is that he doesn't get any worse. The team here has said he is in slightly better condition than he was when he got here so we just have to hope for the best.
Update 1/12/15 has taken a turn for the worse and they have prepped him to start an ECMO treatment if he needs it as a last resort to buy us a little more time. Unfortunately, it is a very high risk step and the longer he is on it the less likely he is to Survive. They just moved us to the room that accomodates that machine but we are praying that he will not need it as it could either end up in a miracle or be the end.
- Cindy Nelson
- Samantha & Jeff Barker
- Kayla Parker
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