5 week old baby boy recently diagnosed
Feb. 26th, 2004   11:06am
This has been such a rollercoaster ride for me and my family.  My son at 3 days old was jaundice had an apnea episode at home.  I gave him CPR, and by the time the ambulance arrived he was breathing on his own.  He never required oxygen. At the hospital his sugar was less than 20 and his temp was 95.  They ran all sorts of tests and did a spinal tap, my more little man didn’t even flinch.  He was then life flighted to Geisinger hospital.  His billi level was 13 because he was jaundice.  They said he’ll spunk up once his level goes down.  His levels spiked to 24, he was then put under the lights for 3 days and wrapped in a billi blanket. a week and a half later they do all sorts of neuro test EEG, CAT and MRI.  All negative.  In week 2 his color still looks poor and his in barely eating 30cc’s every three hours.  In week three is sodium levels are going down and his potassium shoots up.  Still no dx.  Kindeys work fine, liver, heart, neuro, metabolic studies sent and are negative.  Awaiting endocrine results.  He is stable after 3 and a half week in NICU, they send him home with sodium supplementation.  5 days later back in with K at 7.5 and sodium 122.  We now have a possible dx with 11-betahydroxylase.  But he now has RSV.  Will this get better?
Tanya
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