508885 tn?1210870814

Premature baby


I was wondering is there anyone out there who would have come across a problem we are having with our premature son. He was born 32 weeks gestation. Before this my wife's waters had broken at 20 weeks so he was without any amniotic fluid for 3 months. We managed to get him to 32 weeks so when he was born it was 50/50 if he would survive. He had Pneumothorax on his chest right lung re inflated moderate hypoplastic lungs category 1 brain bleed which resolved without complications. He received Nitric oxide for a period of time and was weaned off this gradually. Other meds such as morphine and dopamine were also administered. He was on an oscillator for 3-4 days and was then ventilated for about 1 1/2 weeks from there he went on to cpap were he progressed very well. He was making incredible progress up 8 weeks. Suddenly he took a turn for the worse. His desaturation levels and heart rate was dropping regularly.
This seemed to get worse with time until he started to have episode were he would be gagging for breath turn blue and would need immediate resuscitation sometimes taking 2-3 minutes to get his levels back to normal. Very scary to watch! leading up to this he was coming off the CPAP during the day and back on a night for a period of two days. He was also changed from incubator to a cot and was constipated around the same period. One thing we know about Will our son is that he likes to takes small steps at at time. He has always been like that. So the problem is these episodes is that he is turning blue and needed help to breath again and he is doing a number of times and doctors can't figure it out. He is on anti seizure drugs and caffeine. He is also receiving antibiotics for infection but but all bloods have come back negative and his temperature is fine. He does have alot of secretions which pool in his mouth and possibly his troath. Has anyone come across this problem before as our doctors seem to be clueless and I feel they are not looking hard enough at the problem. One thing to add is that he has been diagnosed with arthrogryposis but this condition is down to lack of waters and would unlikely be genetic and seems to be mild enough as he his making great progress in this area.It could save his life. Thank you!!
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