Monday, May 18, 2015
Another Bug
There's another bug in the system. For some unknown reason we decided to get a cat. The original bug is not happy.
Friday, May 24, 2013
Disney World and other scary things
I very likely am the proud parent of the youngest person ever to ride space mountain. The 18 year old manning the ride assured me it was OK, but it most definitely was not. I spent the whole ride reaching over the seat in front of me in the dark trying to make sure that my daughter was still there. I'm not a huge roller coaster fan, but I rode the entire ride without holding on and the only thing I was scared of was losing my daughter.
Wednesday, July 4, 2012
The last time
The twins are at a fun age. They are learning to use words better, but still get them a little confused.Kaelin says "remember the last time" I did such and such. She means yesterday. She also asks what Monday it is. She really wants to know what day of the week it is. Jack says he's going to win me when he really means he is going to beat me. I don't have the heart to correct them because I know I'm going to be sad when they stop.
Saturday, June 4, 2011
Joseph update - 6/4
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.
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.
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.
Monday, May 30, 2011
Joseph Needs
Josesh needs for his oxygen level in the blood to continue to increase so they can start weaning him off the oscillating ventilator and onto a normal ventilator. Long ventilator use leads to other health concerns. He needs for his pulmonary pressure to go down so he can be weaned from the Nitric Oxide. He needs for his bowels to start working again so the gas stops building up and he doesn't rupture a bowel. He needs for his cranial ultrasound (tomorrow) to show that there is no bleeding in his brain. He needs for the tumors on his heart to not grow or multiply and ideally resolve themselves/dissappear.
Your prayers are appreciated.
Your prayers are appreciated.
Sunday, May 29, 2011
Joseph update 5/27/11
Joseph is now off dovutamine, epinephrine, and dopamine and his blood pressure is staying good.
He's taking two antibiotics but at this point they are just finishing the courses they started at check-in. All tests for infection have come back negative
He's taking one antiviral. They are waiting for the tests for viruses to come back still but told me it is extremely unlikely that he will have a virus at this point.
He is still on the high frequency ventilator. The blended air they are sending him is around 35% and his oxygen saturations are staying together and in a good range.
Lung development is the next hurdle. The last echocardiogram showed his pulmonary blood pressure being near the same level as his systemic bp. It should be 25 % of the systemic. This is an indication that his lungs need some development. The way I understand this is that the alveoli in his lungs are not compliant enough and they are creating pressure on the pulmonary arteries through the lungs. I'm being told that it is likely that the lung compliance will improve over the next days. They are doing another echo in the morning. In the meantime, they are putting nitric oxide into his air. Nitric oxide relaxes the muscles in his pulmonary arteries and causes them to open more.
He's taking two antibiotics but at this point they are just finishing the courses they started at check-in. All tests for infection have come back negative
He's taking one antiviral. They are waiting for the tests for viruses to come back still but told me it is extremely unlikely that he will have a virus at this point.
He is still on the high frequency ventilator. The blended air they are sending him is around 35% and his oxygen saturations are staying together and in a good range.
Lung development is the next hurdle. The last echocardiogram showed his pulmonary blood pressure being near the same level as his systemic bp. It should be 25 % of the systemic. This is an indication that his lungs need some development. The way I understand this is that the alveoli in his lungs are not compliant enough and they are creating pressure on the pulmonary arteries through the lungs. I'm being told that it is likely that the lung compliance will improve over the next days. They are doing another echo in the morning. In the meantime, they are putting nitric oxide into his air. Nitric oxide relaxes the muscles in his pulmonary arteries and causes them to open more.
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