This blog is about losing my little brother, a 19 year old boy, to Mitochondrial Disease.
Monday, July 16, 2012
Its Monday, my first day back to work. I just sent my Dad a text saying i was going to take the day off from the hospital today and go tomorrow, figuring everything was ok since i had not heard anything. Well, my Dad text me saying Andrew is seizing again, which is really really not good. I dont know what the plan is, im waiting for phone calls and am probably going to be leaving work shortly to go to the hospital. Please say a prayer.
Sunday, July 15, 2012
Its Sunday evening, i just got back from the hospital. Andrew is now off Dobutomine (pressor to keep blood pressure high enough while in coma). He had a fever last night, that came down on its own. Still had a lot of movements on EEG but they took it off because his skin was satring to break down and they need an MRI and can't do that with the EEG. Still continues to breathe over the vent here and there. They stopped feedings due to bloated stomach and got residuals in feeding tube from stomach. They gave him a suppository hoping for bowel movement. Considerings trophic feeds (5cc/Hr) just to keep things moving and keep use of the tube. Also started him on colace (stool softener) and miralax (laxative). Neurology checked reflexes which were responsive (left better than right). They also checked pupils and eye movement and said they were more responsive than yesterday which is good. They also checked his brain stem (they did this by injecting cold water into his ear in hopes of eyes moving to ear of injection, they didnt get the response they were looking for but will check again later. No evidence of seizure activity right now. They took off EEG and washed his hair so he looks a little more normal now. The electrodes can cause skin breakdown which we noticed on his forehead. They also cant get an MRI with this on as mentioned before. Doctor said he is making progress from yesterday but still isnt doing some things they were expecting. No gag reflex but he did jerk a little bit the last time they suctioned the vent when i was there. They said he is making some slow progress and not to worry until there is an absence of day to day progression. Central line has some clotted blood stuck so it is useless right now. So they will "TPA" it which means stick some fluid in there to break up the blood. Chest x-ray showed a little more congestion than yesterday so they are turning the "PEEP" up on the vent to help the fluid out of the lungs and help vent work better. They also gave him a breathing treatment for the same reason. Shortly before i left today they gave him an enima because he still had not made a bowel movement.
So with all that said, please continue keeping Andrew in your thoughts and prayers. I keep telling him how many people are praying for him and that he needs to wake up and get better!
(sorry for the misspelled words i have neither the time or energy for spell check) =)
Matt and Markie are sitting with Andrew now, i will update more if there are any changes.
So with all that said, please continue keeping Andrew in your thoughts and prayers. I keep telling him how many people are praying for him and that he needs to wake up and get better!
(sorry for the misspelled words i have neither the time or energy for spell check) =)
Matt and Markie are sitting with Andrew now, i will update more if there are any changes.
Saturday, July 14, 2012
It's Saturday evening, Liz and I just got back from the hospital, we were there from like 12:30 to 5, Dad and Marty were up there for the morning shift. Then Mom and our cousin Jessica are there now. This morning while my Dad was there he said the EEG was spiking quite a bit and Andrew was breathing over the ventilator. His breaths were in the 20-21 area, which is really really good. Last night the highest it went was 13, they have him set on 10 breaths a minute, when Liz and I first got there today he was on 8 breaths a minute. They adjusted Andrews positioning and checked his stats and after that, he quit breathing on his own completely, the vent was doing all the work. I was sitting next to him rubbing his hand talking to him while Liz watched the EEG monitors and they would spike when i talked to him, and when Liz was talking to him when i was watching the screen, so we think he can hear us. The nurses all talk to him too and explain what they are doing. One of the signs that he is waking up is when they suction his breathing tube, he will start to cough eventually. He is not coughing yet at all when they suction him so far.
The doctors have also started to reduce the medication that is speeding up his heart rate and blood pressure through the central line as he starts to wake up. He is still on all seizure medications and Dobutamine. They were able to increase his calorie intake, they are giving him more through his feeding tube. He is still restrained to the bed because we don't want to take the chance of him waking up and pulling his tubes out. They have the restraints pretty loose and he does look comfortable minus all the shit taped to him and tubes going in and out of him. Today his nurse, Casey was changing his position and flipping him every 2 hours, she did have one other patient besides Andrew today, so i don't know if they think hes more stable then before or if they are short handed. The resident doctor came in and chatted with Liz and I for quite awhile trying to answer all our questions. He said the coma meds, Pentobarb and Versed are still in his system. Those meds have a half life of 30-50 hours. Andrew was taken off them about 30 hours ago so they are still about 40-50% still in his system. It could take until they are almost out of his system for him to wake up, they said every patient is different and every ones metabolism is different. He did say Andrew is looking better today than yesterday. They said the spikes on the EEG and him showing us he could breathe over the vent was a huge step in this long process. We were a little concerned he hasn't tried to breathe over the vent at all while we were there, so hopefully he will start to do that again when mom is there tonight. The doctor said if he isn't awake by Monday or Tuesday they will start to worry.
We need Andrew to wake up very soon, and hope his seizure activity has completely stopped or they will have to put him back in coma. The longer he is on the meds to induce coma the less chance of him waking up. Hopefully he will wake up tonight or tomorrow and be able to breathe on his own, they still are not able to tell us how much more damage this seizure has caused on top of the stroke damage. He was seizing uncontrollably for about 18 hours. They did give him the max on the coma meds as well so it could take until Monday or Tuesday for him to wake up, however we are hoping for sooner. We hope he is able to come off the vent as soon as possible after he wakes up and hopefully they will be able to do the G tube instead of the feeding tube. They did say they will do another swallow test after he wakes up, but before this all happened he was refusing to eat his pureed diet.
On that note, please continue to pray for my brother. I will update more tonight or tomorrow.
The doctors have also started to reduce the medication that is speeding up his heart rate and blood pressure through the central line as he starts to wake up. He is still on all seizure medications and Dobutamine. They were able to increase his calorie intake, they are giving him more through his feeding tube. He is still restrained to the bed because we don't want to take the chance of him waking up and pulling his tubes out. They have the restraints pretty loose and he does look comfortable minus all the shit taped to him and tubes going in and out of him. Today his nurse, Casey was changing his position and flipping him every 2 hours, she did have one other patient besides Andrew today, so i don't know if they think hes more stable then before or if they are short handed. The resident doctor came in and chatted with Liz and I for quite awhile trying to answer all our questions. He said the coma meds, Pentobarb and Versed are still in his system. Those meds have a half life of 30-50 hours. Andrew was taken off them about 30 hours ago so they are still about 40-50% still in his system. It could take until they are almost out of his system for him to wake up, they said every patient is different and every ones metabolism is different. He did say Andrew is looking better today than yesterday. They said the spikes on the EEG and him showing us he could breathe over the vent was a huge step in this long process. We were a little concerned he hasn't tried to breathe over the vent at all while we were there, so hopefully he will start to do that again when mom is there tonight. The doctor said if he isn't awake by Monday or Tuesday they will start to worry.
We need Andrew to wake up very soon, and hope his seizure activity has completely stopped or they will have to put him back in coma. The longer he is on the meds to induce coma the less chance of him waking up. Hopefully he will wake up tonight or tomorrow and be able to breathe on his own, they still are not able to tell us how much more damage this seizure has caused on top of the stroke damage. He was seizing uncontrollably for about 18 hours. They did give him the max on the coma meds as well so it could take until Monday or Tuesday for him to wake up, however we are hoping for sooner. We hope he is able to come off the vent as soon as possible after he wakes up and hopefully they will be able to do the G tube instead of the feeding tube. They did say they will do another swallow test after he wakes up, but before this all happened he was refusing to eat his pureed diet.
On that note, please continue to pray for my brother. I will update more tonight or tomorrow.
Last night when me and my mom were at the hospital Andrews EEG started showing some spikes, which basically means he is waking up a little bit. He is off all coma meds. The ventilator has him doing 10 breaths per minute, and he was sneaking in little breaths here and there, the vent would read 12 or 13 which means he is trying to breathe on his own. Once we noticed some activity we said something to his nurse who called in the doctor. They checked his stats and moved him around and suctioned out his nose and mouth. Once all that was done he was no longer showing any signs of waking up and my Dad just text saying everything is pretty much the same since last night. My mom did ask if they will keep him somewhat sedated when he wakes up because he has all these tubes in his nose throat and everywhere else. She said no, they want to see what he can do, they want to make sure he can breathe on his own once he wakes up.. so i guess we just wait. I hope im not there when he wakes up, its not going to be pretty. They do have his arms restrained so he cant pull everything out once he wakes up.
More later..
More later..
Thursday, July 12, 2012
Its Thursday night, me and my mom just got home from the hospital. Gracie and I are staying the night here again tonight. Andrew is still stable. The preliminary reading of the cat scan results were good, they compared it to the MRI taken right after his stroke when he was admitted originally and it showed no further damage or bleeding in the brain from what is going on with the seizures. They are weining him off of the Versed which is one of the meds that is inducing his coma. When Liz and Phil got there they weined him from .4 to .3 and they will wein him during the night, but he wont start coming out of coma until they start weining him off the Pentobarb. He is also on Dobutamine which is keeping him under as well. He is also on his seizure meds regular dosage. He is also on Vinpat, a new seizure medication that is relativly new to the market. The doctors made sure Andrew has his own private nurse who has a lot of experience and has worked with coma patients before, as his case is probably the most involved case they have in the ICU at this hospital currently. His nurse he had during the day today will be his nurse tomorrow, she was very good (not very friendly) but knew exactly what she was doing and was in the room most the day checking his stats. His oxygen is 91 which is low, they are going to do a chest x-ray tonight to make sure the vent is in the right spot, they said they think its a little high. It was very very hard to sit there helpless watching him hooked up to so many different iv lines and monitors and a ventilator. We did find out that Andrew is doing nothing for himself right now while hes hooked to the ventilator, we thought before since they would turn it down he was doing part of the breathing, but we were informed the vent is doing all his breathing. They were also concerned when he was hooked to the catheter, it was nothing but blood, they thought there was internal bleeding coming from somewhere but after they flushed it out they think it was just irritation from the cath.
Please continue to keep Andrew and our family in your prayers, we hope no seizure activity starts once he is being weined off these meds or they will have to keep him in coma longer.
The plan for tomorrow is Dad going up first, then Liz and Phil, then me and mom, i will update when we get home.
Please continue to keep Andrew and our family in your prayers, we hope no seizure activity starts once he is being weined off these meds or they will have to keep him in coma longer.
The plan for tomorrow is Dad going up first, then Liz and Phil, then me and mom, i will update when we get home.
Liz and I came back from Houghton yesterday. Liz and Phil arrived home first, they went straight to the hospital to drive my mom home. They put Andrew in an induced coma but the seizure movement still wasnt stopping, they had to insert a central line to increase his heart rate and blood pressure to give him more seizure meds. He is currently on a ventilator, feeding tube, EEG monitors, its not going to be easy to see him like this, that is for sure. Now he is stable, the did get the seizure movement to stop and his EEG hasnt spiked. They are inducing him every 12 hours until he shows no seizure activity for 24-48 hours then they will very slowly reduce the medications to get him to come out of coma unless grand mal seizure starts again, then they will keep him in coma because they cant seem to get it under control with any medications. They still dont know if Andrew had another stroke or if this was just a grand mal seizure. He is scheduled for an Cat Scan today. My Dad and Marty were up at the hospital early this morning, then Liz and Phil went and relieved him, now me and my mom are going to be leaving in just a minute to go up to relieve Phil and Liz.25 Sorry if i repeated any information and spelling errors, between facebook, texts, blog and phone i cant remember where i was at..
Since Andrew is in ICU only immediate family (My Mom, Dad, Liz and I) can see him right now. I will definitely let everyone know when that changes, i know there are a few people who have been asking to go up.
Update more later.
Since Andrew is in ICU only immediate family (My Mom, Dad, Liz and I) can see him right now. I will definitely let everyone know when that changes, i know there are a few people who have been asking to go up.
Update more later.
Wednesday, July 11, 2012
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