Hi Emily - John's mom again. My son was completely comatose for 3 weeks and during the 4th week started to slowly, a crack at a time, open his eyes. He never had a brain pressure monitor in so maybe it was better to not know of the slight spikes here and there - I don't know. He was off coma meds within days though. the fact that your boyfriend is stil on meds is really hopeful. My son didn't even respond to pain (such as pliers squeezing his finger to the point of bruising under his fingernail.) He also had trach and feeding tube surgeries at 4 weeks out. The trach remained in for about 7 weeks and was removed just before going home, thankfully. the feeding tube was needed even less than that but we had to leave it in for 3 months even though not using it for the reason that taking it out too soon could cause some kind of problem to the stomach. I was so relieved when the tubes were off his face. His throat was very red and inflamed just before they did the trach surgery. I wish we'd done it sooner than 4 weeks actually. Best of everything - it's a long road but you'll have constant victories to rejoice in to keep you going!
Emily -- Also, you asked - anything you need to know: my son developed heterotopic ossification in his hips. That is extra bone growth and we are actually scheduled to have surgery in a month to try to remove it. While in ICU, while comatose, the PT people came and instructed us to move his limbs to keep him limber and avoid contractures. My husband would stretch him for up to an hour per day. They never warned us about H.O. but later said that perhaps too much stretching contributed to it. ?? ): Just ask about heterotopic ossification and see what they say. Common site is on the hips and it can happen (though probably rarely) to brain-injured patients. I think if they find it, especially for adults, there are meds to help stop it. Don't sweat it - it's not likely. But can't hurt to bring it up. We knew nothing about it until he was in physical rehab later and experiencing a lot of pain and the PT asked for an xray
Emily said:
Hi, This Thursday, it will be 3 weeks in a coma for him, but things are starting to look up! His ICP# has remained at or under 20 in sitting position for the most part. In the beginning, When his ICP did go over 20 they gave him Mannitol, like a sodium med to dry him out & that worked. At that time his temp spiked severely and they had to have a cooling machine (I think they called it a sun blanket?) keep him regulated. Luckily we are past that stage now! I will have to ask exactly how high his ICP went, I can't remember. He has basically not been able to move from sitting position since this started. The IVIG treatment ended 3 days ago.They use Pentobarbital for his coma with Fetanyl for pain. They are starting to lowering those the past 2 days!! I saw them check his eyes yesterday they are equal and he has a good cough. he does have a blood clot in his right leg that moved up past his knee that they are controlling with Heperin. I am worried about that.. I did ask about the cancer but the doctors seemed unconcerned, they say this is the treatment he needs for his brain regardless, plus he still can't be laid flat for any length of time for any scans yet. I apologize if all the info I gave is all over the place. Please also check out the reply I posted to my original post for a more in depth update. I'd really love to hear your feedback!
Sunshine said:
Emily, My daughter was 2, but thankfully, she was not in a medically induced coma. She was in an ADEM coma for about 3 days until the first dose of steroids. She breathed fine on her own, but she was unresponsive, and did not open her eyes. Fortunately for us, the steroids worked. 24 hours after the first dose she opened her eyes. She had to relearn how to eat, walk and talk. It was almost 4 weeks before she could stand up. I always wondered how all of my sick patients at my job could just sit there and stare at the wall all day, no TV, etc… And then I realized how. It takes all of your mental energy just to make it through the day. But you can do it. How is he doing? How high did his ICP's go? Are they using propofol for his coma? Are his pupils equal and reactive? does he move all of his extremities? did you ask the doctors about the cancer possibility? Keep me posted, and feel free to ask me if you have any burning medical questions you feel weird asking your own team. I only check in every few days, but I will get back to you.
Mindy
Emily said:
Thank you SO much for your response, knowing that you are an ICU nurse gave me great comfort. Thank you for what you do to help others! Do you mind if I ask how old your daughter is & was she in an induced coma? I am sorry to hear she had to go through this terrible disease but glad she has recovered. Tomorrow is 14 days/2 weeks he will be in the induced coma, it has been a roller coaster. But today was his third straight day with his ICP/pressure number under 20 however he did develop a fever today so they had to put cooling wraps on him & started him on antibiotics rite away. Also when he is laid flat his pressure goes up so they are going to try to hold off on the trach for a few days. I do know he will come out of this fighting once he heals and everything levels out. Thank you so much.
Sunshine said:
Emily, I am an ICU RN. May daughter had ADEM 3 years ago. ADEM is extremely rare, and I actually have never taken care of a patient with it, only have had the experience with my daughter. We see a lot of great outcomes in the ICU, patients are in medically induced comas for a long time, and come out of them just fine. The hard part is, it takes time. Do not be scared when he first wakes up, because he probably will be confused and may not be doing well at first. This is not any indicator of how he will be doing in a few months! It often can take a week or more for the patient to come out of the haze of the coma. Additonally the recovery from ADEM takes up to two years. It took my daughter 4 months just to regain walking steadily, and she continued to progress for almost two years, and still she gets stronger 3 years later. Just remember, the trach and feeding tube are temporary, and patients are a lot less stressed consistently when they get the tube out of their throat. It allows them to have the oral/motor portion of themselves back which controls a lot of stimuli to the brain. Keep us posted, we are all keeping you in our thoughts!
Wow, I can't believe you went through all that without the monitor... maybe not knowing is better bc that is basically what we constantly look at and obsess over that ICP#. Today they actually had to drill another hole in his for a new monitor as the other one stopped working. This is his third one. :( But everything luckily still looks the same and if all goes as planned they will stop the coma meds tomorrow. I think I remember you saying you and your husband decided against the brain monitor, correct? Do you mind if I ask why? I don't know if I want to know this.
Johnsmom said:
Hi Emily - John's mom again. My son was completely comatose for 3 weeks and during the 4th week started to slowly, a crack at a time, open his eyes. He never had a brain pressure monitor in so maybe it was better to not know of the slight spikes here and there - I don't know. He was off coma meds within days though. the fact that your boyfriend is stil on meds is really hopeful. My son didn't even respond to pain (such as pliers squeezing his finger to the point of bruising under his fingernail.) He also had trach and feeding tube surgeries at 4 weeks out. The trach remained in for about 7 weeks and was removed just before going home, thankfully. the feeding tube was needed even less than that but we had to leave it in for 3 months even though not using it for the reason that taking it out too soon could cause some kind of problem to the stomach. I was so relieved when the tubes were off his face. His throat was very red and inflamed just before they did the trach surgery. I wish we'd done it sooner than 4 weeks actually. Best of everything - it's a long road but you'll have constant victories to rejoice in to keep you going!
Hi Emily, There were two times that they suggested putting the monitor in. The day he was admitted and then a few days after that. They had still not diagnosed the ADEM by then. I think they were noting possible increased pressure due to problems with his pupils. Each time, they ran him down for a CT scan and probably noted some swelling but not enough to take any further action - well, at first they had him on coma meds - I'm sure that had to do with brain pressure.
The reason we said 'no' was that the neurosurgeon said that they could put in a monitor but that the results of putting in a monitor did not necessarily prove better. (I don't know why.) They told us this and gave us the decision. My husband said no the first time. I was asked the 2nd time - it was my turn at the hospital with my son. I said I have no idea - I don't feel qualified to make this decision. He went over risk and benefit again and again I decided no. At one week, I think, was the last time he had a pupil issue and was rushed down for a CT scan where they found no appreciable difference from the previous CT scan. They decided that "this is just what he does" - that is, the pupil thing. By the week mark, they had diagnosed the ADEM and he was on steroids. After that one week mark, I don't believe there were any more scares about brain pressure. I don't know if a monitor would have sent up red flags that we never saw. But there didn't seem to be any more crises after that CT scan at one week out. I guess the reason we opted out was that the thought of drilling into his brain sounded so scary to us and we worried about those risks - although the surgeon said they were not big risks. I wouldn't worry about having the monitor in. I don't think that is a bad thing.
Patience Emily. This will be a long road and many things will crop up that you never expected. I am so glad he is doing better. I was never in a coma, but now 5.5 years later still have lingering problems. Hang in there. Thoughts and prayers.
Aw bless you. It’s awful. I was given steroids through an Iv tube and was on steroids for 10 months Abd was in hospital for 4months before I was allowed to be dischRged. It takes time but he will do it. Be strong.
Hello everyone, I appreciate all or your support, the experiences you shared with me and prayers during this difficult time in our lives, it truly helped get me through this. I am happy to report Jason is recovering in a rehabilitation center. If anyone is interested in reading his full ADEM story up until now, I created a blog post, please click this link - http://ourlifewhen.blogspot.com/ I hope to be able to continue posting updates about his recovery there.
Thank you all for the support, I hope everyone is well.