Home SWEET Home

This is just before he got off the oxygen and ready to come home.  I didn't have my camera until the last day.  I will post more hospital pics when I get my sister's camera.  See my long, long post below...

After a traumatic ER visit, 3 scary days in the Pediatric Intensive Care Unit, and a day recovering on the Pediatric Floor, we are VERY glad to be home!  It all started with an ear infection... Thursday evening we got an antibiotic and he just wasn't getting better.  Friday afternoon and thru the night, Jaron was eating less and crying more.  By Saturday afternoon, he had only had 5 ounces to drink in 30 hours and no wet diaper in 12 hours.  The pediatrician on-call said that a baby should not go 6 hours without a wet diaper and he should go in to the ER to check for dehydration.   Brian left work early so that he could come with us.  I'm so glad we were there together because it was a horrible experience.  We were advised to go to Emanuel because they have a Children's ER and intensive care.  Also, Jaron's neurologist is there so he is in their computers already.  We learned so much about the specific needs of our baby and how to advocate for him even when we are unsure and being advised by a very experienced doctor to do something we are uncomfortable about.  Basically, when you present a very ill baby who is less than 60 days old, you are bound to get the WHOLE gamut of testing no matter what.  They tested his blood, urine, chest x-ray, blood gases, and a lumbar puncture for meningitis.  We now KNOW to never consent for a lumbar puncture on Jaron.  We had to learn the hard way.  It is like an epidural because they have to draw fluid out of their spine.  Any woman who has had an epidural knows, it is an uncomfortable process because you have to lean forward, curling your back and hugging a pillow over your very large baby belly (not fun).  With Jaron, they had to roll him in a ball and try to hold him still while poking a needle in his back.  Brian and I did not want to be in the room for this procedure so we went downstairs and got a bite to eat.  When we came back, he was in a higher trauma room with CPAP oxygen mask on and in obvious distress.  The only report we got was that he turned bright purple and they immediately stopped the procedure to get him breathing.  From then on, poor Jaron was looking and acting horrible.  The day he was born they discovered he has low tone and is unable to support his airway.  He arches his back and neck often, possibly because of acid reflux but also to keep his airway open.  So, of course, when they rolled him in a ball he was unable to breathe.  He was spiraling downhill and the ER doc was seconds from intubating Jaron with a ventilator.  We both watched him helplessly but knew that he was in utter panic and needed warmth, calm, security... and he really didn't like the hi-flow oxygen blaring into his nose.  I asked if they could remove the oxygen so that we could calm him down and they refused.  Brian was not comfortable with the way they were handling Jaron and basically refused their attempt to intubate him because he felt it was their fault the baby had gotten so upset and distressed.  Remember, we brought him in just 2 hours earlier, very calmly, only because he was not eating and peeing, he was in no distress at home.  It felt too extreme to put him on a ventilator right then. The ER doctor then sent us up to the Pediatric ICU and said they could sit down with us and discuss the ventilator.  Thank you LORD!  It was a little crazy when we got him to the ICU initially, but in minutes they had Jaron wrapped in warm blankets and in Brian's arms in a rocking chair (while I gave the nurses his health history for admitting) and the new doctor sat down and talked calmly with us.  Jaron fell asleep peacefully, praise God!  He was never put on a ventilator but he was kept on oxygen from Saturday night until Tuesday at 10 a.m.  They tested for lots of things and just automatically put him on IV antibiotics (which, ironically, treats meningitis so why the lumbar puncture???)  By 2:30 a.m. Jaron had an IV in his arm, his head, and one in his leg that has a tube from his ankle fed thru a vein up to his belly (this procedure required sedation which they kept him on thru the first night).  Then Brian went home and I stayed in a parent's room with 6 beds for PICU parent's.  Jaron was on the hi-flow oxygen until Sunday morning and then was weaned to the lo-flow thru the day and transferred to the normal floor Monday to get off the oxygen completely before being discharged Tuesday.  They are not sure what virus he had but something in his lungs because he required the oxygen.  Probably a viral pneumonia.  He is much better now and so happy to be home!  Thank you for praying for us.  So many more details I could share but I'm just thankful he is ok and our family is back together!