Day 38 - Hospital Stay
Day 33 - Intubated
Logan's sodium level is back at a good 134, down from 127 at his worst. They will continue to monitor his sodium level. They will giving him even more concentrated formula at 26 cal, and maybe some diuretics to lose the excess water. His urine output was good, as well as his dirty diapers. Today is his last day of antibiotics, so hopefully, the diarrhea will stop soon. But do we want it to stop, since it helps getting rid of more water? At least his little bottom won't turn red again.
I have requested to speak to a Catholic priest. I have not been the best Catholic in recent years. However, I need some guidance. I want Logan to be baptized. Maybe a miracle will happen after he's baptized, or it might give him and us some peace.
We will have our big meeting with the Geneticists, Intensivists, Neurologist and other specialists tomorrow at 3:30 p.m. This is it. The big one. This will be the worst meeting of my life.
10:30 a.m. - Logan is down at MRI at the moment. Logan opened his eyes during transport and was moving a bit. Maybe he knows something is going on? I was chatting with the Chief earlier, when she was accompanying Logan to the MRI room and getting him set-up. She just talked to the neurologist regarding the EEG result. I knew it's going to be bad news. The result was a lot worse than the one he had a month ago. He is showing some seizure-like activities, and he's not very responsive. His waves are basically all over the place. The Chief said we might actually see him seize in the near future. Because of Leigh's disease, anti-seizure medication is probably not going to help. I do NOT want to see Logan seize. I just want to see him calmly sleeping.
11:10 a.m. - I just heard that Logan will be back up soon. I already know the MRI will show more strokes and more damages to his brain. I can't imagine how one month can change everything.
11:20 a.m.- Neurologist stopped by, basically confirming what the Chief said. He asked me what I want to do in case of giving Logan anti-seizure medication. He said he won't base a treatment solely on the result of the EEG, but on Logan overall as being Logan. I told him I just want Logan to be comfortable. I asked him how responsive is Logan in regards to me touching him. He explained Logan is like having a flu, he might respond but because he's so sick, it might not be the appropriate response that we're looking for. The EEG technician tickled Logan's chin and toes yesterday during the EEG, but did not see much brain activities going on.
11:45 a.m. - Logan is back and has his eyes open. I just talked to a priest. He will come and baptize Logan at 4 p.m. and will talk to me about what I should do. I hate to be one of those people who turn to God whenever there's a crisis. But I really don't know what to do.
1:00 p.m. - Just talked to the Opthamalogist regarding the findings of the eye exam. As expected, things have gotten worse. In the past exam, it was noted that Logan had a cherry red spot, but he was still able to see light and transmit it to the brain. The cherry red spot is not red any more. Blood hasn't been transported through the blood vessel, and the spot has become blanched. The layers that is in the retina are slowly become smaller, as well as the blood vessels. Signal of the light no longer transmits to the brain. He said in a few weeks, there may not be enough blood to flow through the optic nerve to the brain. I guess basically, anything that can go wrong, has gone wrong.
2:00 p.m. - Intensivist came in to talk to me and gave me the result of the MRI. There are more strokes in the basal ganglia and the brain stem. It's more and more difficult to be optimistic after test and test prove that there's no light at the end of the tunnel. I would be lying if I say I haven't thought of the unthinkable option of letting him go. I can't decide right now. I don't know if we should continue to be optimistic to give Logan a chance to fight, or to let him rest so that he doesn't have to fight anymore. His respiration rate dropped just now and took a minute or two to bring that back up. Maybe he's getting tired. I don't know what's best for him anymore.
Showing posts with label EEG. Show all posts
Showing posts with label EEG. Show all posts
Wednesday, April 8, 2009
Thursday, March 5, 2009
Semi-real time blog while at the hospital
8:45 a.m.- arrived at hospital and the technician was putting EEG probes and video on Logan. So I went outside while that was being done.
9:15 a.m.- came back inside and the nurse and technician said the EEG will be on for 24-hour monitoring, instead of just 20 mins. When an episode happened, I can inform the nurse immediately and she can note down the time and look at the EEG monitor.
9:30 a.m. - met with the Pediatric GI doctor. I told him again about his acid reflux history and what the episodes look like. He said acid reflux could cause the breathing problems, but usually not the stiffening of the body. For now, we will do the EEG and if we can't detect anything, they will put a pH probe in him (after stopping drugs). He said from what I have described, it didn't seem like it's acid reflux, but we want to be able to rule out everything.
10:00 a.m. - doctors came in for rounds. He had one episode at around 5 a.m. Will continue to monitor with EEG, and will decrease the high flow to see how he can tolerate it. Will talk to ped neurologist about it. I have also requested to get a second opinion from the ped neurologist since we are down here anyway.
10:10 a.m. - called Hank and updated him. Ped neurologist came in to look at EEG monitor and to check on him. Asked if a MRI is better but he said to look for seizures, EEG is the one to go.
10:15 a.m.- Nurse turned down flow to 2 L and Logan finally went to sleep. The high flow really bothered him as air was pushing into his lungs.
10:20 a.m. - He had an episode!!. They were figuring out the technical difficulties of the EEG machine to see if the episode was recorded. Freaked me out because I didn't get to him early enough and he turned pretty dusty. Usually I was able to get to him sooner once I heard the ding ding of the machine when his respiration goes down. As I was typing this blog, I didn't get to him fast enough. He's ok now.
10:40 a.m.- Ped neurologist and tech are looking at the EEG monitor to figure things out and to see if anything is being captured.
10:50 a.m.- Both the tech and the neurologist said it's not a seizure. I asked if we should wait for another episode. They are pretty sure it's not and it's clear cut. Grr... he said it might be respiratory. Neuro would like his probes off so that he could examine him a little better. He's going to talk to the other doctors and then come back and talk to me.
11:42 a.m.- just finished talking to the Ped Neuro. He did an exam on Logan, asked some questions and is off looking at his huge medical record. Logan is awake now after the examination, moving his arm and legs, thus making it difficult to monitor his oxygen saturation.
12:15 p.m.- Pulmonologist stopped by to see him. Suggested trying the C-pap for Logan to see if it is going to help with his breathing when he sleeps. Might do bloodwork that neurologist has mentioned. Asked pulmonologist if caffeine that's being used for preemie might help with his apnea. She said it might, but caffeine also worsens acid reflux.
1:30 p.m. - Came back from lunch and nurse said Logan had another episode. He is currently at 0.85L of oxygen and changed back to regular nasal cannula. The cannula doesn't bug him as much now. Gave him a nice wipe of the stinky sour neck and changed bedding.
2:00 p.m. - He's getting a little sleepy but this is always when we have to worry about him since his episodes seemed to happen when he's asleep.
2:15 p.m.- another one. I was looking at the monitor and saw that his RR was 17 but the wavelengths show that he was breathing VERY shallowly. Then his face changed color again, eyes opened briefly, needed us to prop him up and open his mouth. He just won't breathe for whatever reason. And, he went right back to sleep as if nothing happened.
4:08 p.m. - just finished talking to pediatrician about Logan. The urinalysis came back from the sample taken on the 3rd and it seems like he has a bladder infection. Still have to wait for the culture to see what type of bacteria. For the time being, Logan will be receiving antibiotics. It seems like his kidneys are ok but he will get an ultrasound just to be sure. He will also get a VCUG (shoot dye up in his bladder through a catheter into his little pee pee and then do an x-ray). For the time being, all medications will be stopped to prepare for the pH probe on Monday. He will resume feeding. If his acid reflux gets worse, then it shows that his reflux is present and we probably don't have to do the pH probe. The probe is supposed to be left in him for 24 hours, and if he has any episodes while the probe is in there, they will match the time to the activity that the probe shows. Logan will also get the Bi-pap tonight with(without) oxygen to see if it is going to help with the episodes. The bi-pap works similarly to the high flow oxygen that he was getting last night. The ped neurologist will come see him again tomorrow to do a more detailed exam and might do a MRI, if necessary. Of course the concern is still his apnea while sedated for the MRI. I mentioned the hearing test that he's scheduled to do on the 19th, and if he's going to be sedated for the MRI, might as well do the hearing test as well to kill two birds with a stone. Pediatrician will double-check on the type of hearing test. I also asked about the radiation from all the x-rays and scans that he has received and if it's going to be bad for him. Ped said that the CT scan and x-rays are worst, but the radiation is just as bad if you're out in the sun at the beach. Since he didn't have many CT scans in a short period of time, I shouldn't worry about it. We also talked about the different symptoms and his laryngomalacia and hypotonia.
4:30 p.m.- had another one but I was right there to catch it. Staring at the monitor and his face at the right time.
4:55 p.m. - Mommy's leaving to pick up big brother from school.
9:15 a.m.- came back inside and the nurse and technician said the EEG will be on for 24-hour monitoring, instead of just 20 mins. When an episode happened, I can inform the nurse immediately and she can note down the time and look at the EEG monitor.
9:30 a.m. - met with the Pediatric GI doctor. I told him again about his acid reflux history and what the episodes look like. He said acid reflux could cause the breathing problems, but usually not the stiffening of the body. For now, we will do the EEG and if we can't detect anything, they will put a pH probe in him (after stopping drugs). He said from what I have described, it didn't seem like it's acid reflux, but we want to be able to rule out everything.
10:00 a.m. - doctors came in for rounds. He had one episode at around 5 a.m. Will continue to monitor with EEG, and will decrease the high flow to see how he can tolerate it. Will talk to ped neurologist about it. I have also requested to get a second opinion from the ped neurologist since we are down here anyway.
10:10 a.m. - called Hank and updated him. Ped neurologist came in to look at EEG monitor and to check on him. Asked if a MRI is better but he said to look for seizures, EEG is the one to go.
10:15 a.m.- Nurse turned down flow to 2 L and Logan finally went to sleep. The high flow really bothered him as air was pushing into his lungs.
10:20 a.m. - He had an episode!!. They were figuring out the technical difficulties of the EEG machine to see if the episode was recorded. Freaked me out because I didn't get to him early enough and he turned pretty dusty. Usually I was able to get to him sooner once I heard the ding ding of the machine when his respiration goes down. As I was typing this blog, I didn't get to him fast enough. He's ok now.
10:40 a.m.- Ped neurologist and tech are looking at the EEG monitor to figure things out and to see if anything is being captured.
10:50 a.m.- Both the tech and the neurologist said it's not a seizure. I asked if we should wait for another episode. They are pretty sure it's not and it's clear cut. Grr... he said it might be respiratory. Neuro would like his probes off so that he could examine him a little better. He's going to talk to the other doctors and then come back and talk to me.
11:42 a.m.- just finished talking to the Ped Neuro. He did an exam on Logan, asked some questions and is off looking at his huge medical record. Logan is awake now after the examination, moving his arm and legs, thus making it difficult to monitor his oxygen saturation.
12:15 p.m.- Pulmonologist stopped by to see him. Suggested trying the C-pap for Logan to see if it is going to help with his breathing when he sleeps. Might do bloodwork that neurologist has mentioned. Asked pulmonologist if caffeine that's being used for preemie might help with his apnea. She said it might, but caffeine also worsens acid reflux.
1:30 p.m. - Came back from lunch and nurse said Logan had another episode. He is currently at 0.85L of oxygen and changed back to regular nasal cannula. The cannula doesn't bug him as much now. Gave him a nice wipe of the stinky sour neck and changed bedding.
2:00 p.m. - He's getting a little sleepy but this is always when we have to worry about him since his episodes seemed to happen when he's asleep.
2:15 p.m.- another one. I was looking at the monitor and saw that his RR was 17 but the wavelengths show that he was breathing VERY shallowly. Then his face changed color again, eyes opened briefly, needed us to prop him up and open his mouth. He just won't breathe for whatever reason. And, he went right back to sleep as if nothing happened.
4:08 p.m. - just finished talking to pediatrician about Logan. The urinalysis came back from the sample taken on the 3rd and it seems like he has a bladder infection. Still have to wait for the culture to see what type of bacteria. For the time being, Logan will be receiving antibiotics. It seems like his kidneys are ok but he will get an ultrasound just to be sure. He will also get a VCUG (shoot dye up in his bladder through a catheter into his little pee pee and then do an x-ray). For the time being, all medications will be stopped to prepare for the pH probe on Monday. He will resume feeding. If his acid reflux gets worse, then it shows that his reflux is present and we probably don't have to do the pH probe. The probe is supposed to be left in him for 24 hours, and if he has any episodes while the probe is in there, they will match the time to the activity that the probe shows. Logan will also get the Bi-pap tonight with(without) oxygen to see if it is going to help with the episodes. The bi-pap works similarly to the high flow oxygen that he was getting last night. The ped neurologist will come see him again tomorrow to do a more detailed exam and might do a MRI, if necessary. Of course the concern is still his apnea while sedated for the MRI. I mentioned the hearing test that he's scheduled to do on the 19th, and if he's going to be sedated for the MRI, might as well do the hearing test as well to kill two birds with a stone. Pediatrician will double-check on the type of hearing test. I also asked about the radiation from all the x-rays and scans that he has received and if it's going to be bad for him. Ped said that the CT scan and x-rays are worst, but the radiation is just as bad if you're out in the sun at the beach. Since he didn't have many CT scans in a short period of time, I shouldn't worry about it. We also talked about the different symptoms and his laryngomalacia and hypotonia.
4:30 p.m.- had another one but I was right there to catch it. Staring at the monitor and his face at the right time.
4:55 p.m. - Mommy's leaving to pick up big brother from school.
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