They are starting to feed Joseph today. The plan is to give him 1 teaspoon of food every 24 hours. The feeding tube is through his nose. The gas bubble in his stomach has resolved and his stomach sounds are good.
They are weaning him off his Hydrocortisone which is his last blood pressure medicine.
Monday he will have another head ultrasound.
On Tuesday he will have another echo done of his heart
White blood cells in spinal fluid are elevated so they will continue treating him with antibiotics. None of the doctors have sounded very conclusive on the results of the spinal tap. They did tell me that they do monitor the level of antibiotic in his blood stream and make sure it doesn't rise to a level that would impact his hearing.
The nurse on nights put a pacifier in his mouth. The day nurse said he REALLY likes it. He did not have it in when I got here.
Saturday, June 4, 2011
Friday, June 3, 2011
Joseph Update - 6/3/11
We'll start with the good stuff and then end with the scary stuff
Good Stuff -
His blood pressure is stable without any medication with the exception of hydrochortizone. They are weaning this to every 24 hours instead of every 12 hours.
His pulomonary blood pressure is down to 2/3rds of his systemic pressure. They are weaning him off the Nitric Oxide based on these results. This is a very good sign for his lungs. The will be checking this again on Monday I believe.
His blood gases look "great" to quote the doctor. Based on this they would like to take him off the High Frequency Oscillating Ventilator (HFOV) and put him on a standard ventilator. However, since he has a Bleb (see scary stuff below), they are going to leave him on the HFOV for now.
Scary Stuff -
He still has a Grade 4 IVH (blood in his brain matter). They will check this again on Monday I think.
The tumors on his heart could be a condition called tuberoscholorosous. I haven't researched this yet. The feeling I get from the doctors is that it would be a game changer on par with cerebral palsy. They will be doing some genetic testing today. We won't know the resuts for 2 weeks.
There is a Bleb on his chest. As I understand it, this is an air bubble that is caused from air leaking out of his lungs. It is common in premies but if it bursts and causes a nemothorax, then they will have to insert a chest tube to remove the air
Bowels are still not working as far as I know. The doctors have not mentioned this for a couple of days.
They will be doing a spinal tap today to check for infection in the spinal fluid (meningitus). This is treatable with antibiotics. However, they don't want to just treat it unless necessary since he is already on some serious antibiotics and too much antibiotics in his system can lead to hearing loss. The risks of the spinal tap are infection, which he already has and is being treated for, and excessive bleeding, which the doctor does not see as a likely outcome.
Billirubun is still high. They don't seem too concerned with this since they see this with most premies. However his is lingering and it is an indication that his liver is not breaking down red blood cells adequately. They are hanging an additional light to help with this.
Good Stuff -
His blood pressure is stable without any medication with the exception of hydrochortizone. They are weaning this to every 24 hours instead of every 12 hours.
His pulomonary blood pressure is down to 2/3rds of his systemic pressure. They are weaning him off the Nitric Oxide based on these results. This is a very good sign for his lungs. The will be checking this again on Monday I believe.
His blood gases look "great" to quote the doctor. Based on this they would like to take him off the High Frequency Oscillating Ventilator (HFOV) and put him on a standard ventilator. However, since he has a Bleb (see scary stuff below), they are going to leave him on the HFOV for now.
Scary Stuff -
He still has a Grade 4 IVH (blood in his brain matter). They will check this again on Monday I think.
The tumors on his heart could be a condition called tuberoscholorosous. I haven't researched this yet. The feeling I get from the doctors is that it would be a game changer on par with cerebral palsy. They will be doing some genetic testing today. We won't know the resuts for 2 weeks.
There is a Bleb on his chest. As I understand it, this is an air bubble that is caused from air leaking out of his lungs. It is common in premies but if it bursts and causes a nemothorax, then they will have to insert a chest tube to remove the air
Bowels are still not working as far as I know. The doctors have not mentioned this for a couple of days.
They will be doing a spinal tap today to check for infection in the spinal fluid (meningitus). This is treatable with antibiotics. However, they don't want to just treat it unless necessary since he is already on some serious antibiotics and too much antibiotics in his system can lead to hearing loss. The risks of the spinal tap are infection, which he already has and is being treated for, and excessive bleeding, which the doctor does not see as a likely outcome.
Billirubun is still high. They don't seem too concerned with this since they see this with most premies. However his is lingering and it is an indication that his liver is not breaking down red blood cells adequately. They are hanging an additional light to help with this.
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