These last few days have definitely been some of the scariest days thus far. Not only are we now fully comprehending the alarms, beeps and numbers on his monitors, but Benton has been having a rougher time over the past few nights.
Yesterday morning we went to visit Benton and heard he had given the nurses quite a bit of excitement the evening before because Benton had been 'de-sating' which means his blood oxygen concentration levels were going down. The night nurse had noticed that there seemed to be a bit of extra room around his respirator tube and this may have been causing his tube to come out from its correct position. The hospital staff made the decision to increase the size of his respirator tube from 2 to 2.5 (this number indicates the internal diameter in mm). One thing to note is that normally babies are intubated with a 2.5 tube and most hospitals don't even carry the 2mm tube. On the day Benton was born the 2.5 tube was too large for him and luckily Georgetown carried the smaller tube. This increase in Benton's tube size was a quick win for us as it showed his airway had either grown or the swelling had decreased. As Benton's nurse said, "he's on his big kid tube now".
Along with the addition of the bigger size tube, the doctor explained that he believed Benton was suffering from a condition called PIE (Pulmonary Interstitial Emphysema). Today the doctors confirmed that this was indeed the case. It means that Benton's premature lungs are a roughed up from all the pressure the vent was putting on them. The condition results in a decrease in lung efficiency. Depending on the day, Benton needed an oxygen mix of anywhere between 25% and 45%, but now he needs closer to 70%. At this point, the doctors want to wait for his lungs to heal himself before taking any other actions. There is a possibility of treating Benton with steroids to reduce the swelling in the lungs but that is a call they will make later depending on how Benton tolerates his condition.
Further complicating the issue is that Benton is trying to breath on his own which is actually at odds with the specialized JET ventilator. The standard ventilation will let the infant breath independently, but the JET is designed to do all the work for you. And as Benton tries to breath by himself, it causes a decrease in efficiency. They are giving Benton some morphine to relax him and hopefully he will let the machine give his lungs a rest.
We also talked with his doctors regarding his most recent head ultrasound and they indicated that he did have a small level 1 (out of 4 levels) brain bleed, and they would watch this to see if it grew. This scared us at first, but on Monday we found out that both a level 1 and level 2 brain bleed does not pose long term complications. Our prayers will be that this bleed remains at the current level or fixes itself.
That same day we read Benton lots of stories and held him while telling him how much his mommy and daddy love him. Benton has really seemed to love hearing stories read to him as his levels always seem to increase whenever we touch or talk to him.
Sunday evening we went back to visit him and started reading him the Berenstein Bears and Bear Wants More as well as singing him the Snuggle Puppy Love Song. While we were reading him stories his blood oxygen levels were drawn and his heartbeat plummeted and he started de-sating. As we watched on many doctors and nurses came running to his bedside. It is such a scary thing to watch your son struggle in such an environment even with the best nurses and doctors helping him. Luckily Benton's vitals stabilized quickly and we were able to finish reading him his story. It just goes to show how much of a roller-coaster ride his road to recovery will be.
Right now our biggest prayers are for Benton's lungs to heal, his PDA to close and his brain bleed to stay at it's current level or even go away. Please continue to send your thoughts and prayers to Benton and bring healing energy to our miracle baby boy.
Yesterday morning we went to visit Benton and heard he had given the nurses quite a bit of excitement the evening before because Benton had been 'de-sating' which means his blood oxygen concentration levels were going down. The night nurse had noticed that there seemed to be a bit of extra room around his respirator tube and this may have been causing his tube to come out from its correct position. The hospital staff made the decision to increase the size of his respirator tube from 2 to 2.5 (this number indicates the internal diameter in mm). One thing to note is that normally babies are intubated with a 2.5 tube and most hospitals don't even carry the 2mm tube. On the day Benton was born the 2.5 tube was too large for him and luckily Georgetown carried the smaller tube. This increase in Benton's tube size was a quick win for us as it showed his airway had either grown or the swelling had decreased. As Benton's nurse said, "he's on his big kid tube now".
Along with the addition of the bigger size tube, the doctor explained that he believed Benton was suffering from a condition called PIE (Pulmonary Interstitial Emphysema). Today the doctors confirmed that this was indeed the case. It means that Benton's premature lungs are a roughed up from all the pressure the vent was putting on them. The condition results in a decrease in lung efficiency. Depending on the day, Benton needed an oxygen mix of anywhere between 25% and 45%, but now he needs closer to 70%. At this point, the doctors want to wait for his lungs to heal himself before taking any other actions. There is a possibility of treating Benton with steroids to reduce the swelling in the lungs but that is a call they will make later depending on how Benton tolerates his condition.
Further complicating the issue is that Benton is trying to breath on his own which is actually at odds with the specialized JET ventilator. The standard ventilation will let the infant breath independently, but the JET is designed to do all the work for you. And as Benton tries to breath by himself, it causes a decrease in efficiency. They are giving Benton some morphine to relax him and hopefully he will let the machine give his lungs a rest.
We also talked with his doctors regarding his most recent head ultrasound and they indicated that he did have a small level 1 (out of 4 levels) brain bleed, and they would watch this to see if it grew. This scared us at first, but on Monday we found out that both a level 1 and level 2 brain bleed does not pose long term complications. Our prayers will be that this bleed remains at the current level or fixes itself.
That same day we read Benton lots of stories and held him while telling him how much his mommy and daddy love him. Benton has really seemed to love hearing stories read to him as his levels always seem to increase whenever we touch or talk to him.
Sunday evening we went back to visit him and started reading him the Berenstein Bears and Bear Wants More as well as singing him the Snuggle Puppy Love Song. While we were reading him stories his blood oxygen levels were drawn and his heartbeat plummeted and he started de-sating. As we watched on many doctors and nurses came running to his bedside. It is such a scary thing to watch your son struggle in such an environment even with the best nurses and doctors helping him. Luckily Benton's vitals stabilized quickly and we were able to finish reading him his story. It just goes to show how much of a roller-coaster ride his road to recovery will be.
Right now our biggest prayers are for Benton's lungs to heal, his PDA to close and his brain bleed to stay at it's current level or even go away. Please continue to send your thoughts and prayers to Benton and bring healing energy to our miracle baby boy.
Praying for Benton's lungs and for all of you.
ReplyDeleteRob and I have you in our hearts and prayers! Benton is such a fighter! He must already know how much he is loved!!
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