Wow!! That is a good way to put it!!
I am still praying and sending vibes to Aiden!!!
I am still praying and sending vibes to Aiden!!!
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prayers and vibes for my exbf and son
- Thread starter blondrebel76
- Start Date
- Thread Starter Thread Starter
- #62
thank you to everyone still praying and sending thoughts and vibes. Baby Aidan and his family still has a very long road ahead. I will continue to keep y'all updated as long as anyone is interested and as long as i get updates to post. Thank you again!
Thank you so much for these updates. I haven't sent any more e-cards after those first two, because it seems inappropriate while he's still so much on the edge... but I hope you will convey our heartfelt hopes for Aidan to turn the corner very soon. Please let his folks know that we're thinking of him every single day.
Has he even woke up at all yet or moved??
- Thread Starter Thread Starter
- #65
they said he kinda wakes up, not to total what we would think of as awake, but more or less comes a little out of his comatose state but when he does it causes his vitals to elevate and him to have sesures (sp). here is the latest two updates i got today, i was gone all day so this is my first chance to post them.....these are from Russ, the last one really dont sound good. i will watch for further updates tonight and post as soon as i have them. the last one was posted at 12:30pm eastern time.
Update on Aidan. Aidan is still having his "episodes" ("storms" as they call them in the medical community). The good thing is that he is calming himself down from them. As of this posting, the last bolus of sedative they gave him was 10:30 yesterday morning. They started him on a beta blocker (can't remember the name) and they are still considering the other drug should he have problems when they start taking him off the sedative.
The Dr. also talked to Erin while I was at my job interview and he suggested that we go ahead and get the tracheostomy and gastro tube into his done. Doing this would get him extubated and get the nasal gastro tube removed, which would then allow us to get him off sedation (soon), into a regular room (eventually), and (most important to us) finally hold him. Erin is giving the OK today, and once the ENT (ear/nose/throat Dr.) and surgeon coordinate the time, they'll get it done. This will most likely be in the next day or two.
I hear you ... "How did your job interview go?" you ask. Well, I wouldn't say it was so much an interview as it was the manager/supervisor explaining what my job responsibilities would be. He never really asked me any questions except to know if I had any questions.
Does this mean I got the job? Hard to say. I do know that when I was talking with my recruiter before my interview he had been pushing me really hard to the guy. I'll likely call the recruiter later today and follow-up with him. I did ask when I would start and the guy who interviewed me said it would definitely not be next Monday. He said it could take some time because of the various checks they are required to do before they officially hire someone.
Also, I have received all your feedback regarding networking connections for jobs. I will get to them all as quickly as possible.
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Erin just called me from the hospital
And she informed me that Aidan had another one of his "episodes", and this one lasted 2 hours! His pulse was as high as 280 at one point! Erin pushed the doctors to get the tracheostomy done ASAP, but they seem to be unconcerned, saying it may not be until Monday that they will be able to perform the procedure!
This is twice that his pulse has gone up to the 200 range that we are aware of. You can bet that I am keeping track of these and will be asking questions once he is out of the hospital and into rehab if we discover further problems or development delays.
Erin is on her way to pick me and Evan up. More to come later.
Update on Aidan. Aidan is still having his "episodes" ("storms" as they call them in the medical community). The good thing is that he is calming himself down from them. As of this posting, the last bolus of sedative they gave him was 10:30 yesterday morning. They started him on a beta blocker (can't remember the name) and they are still considering the other drug should he have problems when they start taking him off the sedative.
The Dr. also talked to Erin while I was at my job interview and he suggested that we go ahead and get the tracheostomy and gastro tube into his done. Doing this would get him extubated and get the nasal gastro tube removed, which would then allow us to get him off sedation (soon), into a regular room (eventually), and (most important to us) finally hold him. Erin is giving the OK today, and once the ENT (ear/nose/throat Dr.) and surgeon coordinate the time, they'll get it done. This will most likely be in the next day or two.
I hear you ... "How did your job interview go?" you ask. Well, I wouldn't say it was so much an interview as it was the manager/supervisor explaining what my job responsibilities would be. He never really asked me any questions except to know if I had any questions.
Does this mean I got the job? Hard to say. I do know that when I was talking with my recruiter before my interview he had been pushing me really hard to the guy. I'll likely call the recruiter later today and follow-up with him. I did ask when I would start and the guy who interviewed me said it would definitely not be next Monday. He said it could take some time because of the various checks they are required to do before they officially hire someone.
Also, I have received all your feedback regarding networking connections for jobs. I will get to them all as quickly as possible.
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Erin just called me from the hospital
And she informed me that Aidan had another one of his "episodes", and this one lasted 2 hours! His pulse was as high as 280 at one point! Erin pushed the doctors to get the tracheostomy done ASAP, but they seem to be unconcerned, saying it may not be until Monday that they will be able to perform the procedure!
This is twice that his pulse has gone up to the 200 range that we are aware of. You can bet that I am keeping track of these and will be asking questions once he is out of the hospital and into rehab if we discover further problems or development delays.
Erin is on her way to pick me and Evan up. More to come later.
Oh the poor baby!! Its good to know he wakes up a little, really sad that he has to have the tracheostomy! Wont he still have to be on some sort of ventilator though?? IDK, just thought Id ask! I hope everything goes good from here on out!
From my long experience dealing with healthcare people taking care of my parents, let me suggest: it's vital that you get them to explain everything to you in detail, and that you get a briefing every day from the primary doctor on the case.
Even when nurses and techs come in to do routine things to the patient, you should ask them about it -- partly to make sure you know what's going on, and partly because it forces them to pause and think for a moment about what they're going to do.
This turns you into a pest, but it heightens the attentiveness of the staff, reduces the likelihood of mistakes, and helps you make better-informed decisions.
The pressure on the family of a hospital patient is truly unbearable. They've got to take a little time for themselves at least once a day, or they will simply collapse from the weight of their responsibilities. I know, because I've done it myself. Please give them all our good wishes...
Even when nurses and techs come in to do routine things to the patient, you should ask them about it -- partly to make sure you know what's going on, and partly because it forces them to pause and think for a moment about what they're going to do.
This turns you into a pest, but it heightens the attentiveness of the staff, reduces the likelihood of mistakes, and helps you make better-informed decisions.
The pressure on the family of a hospital patient is truly unbearable. They've got to take a little time for themselves at least once a day, or they will simply collapse from the weight of their responsibilities. I know, because I've done it myself. Please give them all our good wishes...
- Thread Starter Thread Starter
- #68
i will. i always pass on the messages and thoughts and suggestions. i think the reason they are gonna do the tracheostomy has to do with the risk of infection from the tubes, at least that was the way i understood it. i haven't heard anything since the last post so i assume it will be early morning before i hear anything else, i am sure they are pretty busy and just havent taken time to sit down to send any messages out. but as soon as i hear anything i will post again.
- Thread Starter Thread Starter
- #69
update from russ
I'm just about to go into Aidan's room this morning, but decided to post regardign what happened last night. The Guest Wireless Access was down last night, which is why I am updating now.
Aidan is still having the occassional episode/storm, but none have come anywhere close to how the really bad one was yesterday morning/afternoon. In general, he is calming himself down, but they did have to give a bolus of sedative last night when I was in there with him. They are putting shoes on his feet to prevent them from falling. They are also waiting for splints to come in to put on his hands/arms so his wrists won't be permanently turned inward. They have also started turning him every couple of hours to help loosen anything in his lungs, as well as prevent hot spots and bed sores from forming.
I finally got to see him open his eyes on his own last night. It was kinda like watching someone wake up from a nap, but he didn't really respond when I tried to make him notice me (me and the nurse would try to put a hand over one of his eyes neither the other eye nor his head moved in response). Erin said he did this when she was in there, but she was able to get a response from him. Maybe he just wasn't as sedated previously.
At this time, the tracheostomy is scheduled for Monday. IMO, this is far later than it should be, but apparently this was the earliest the surgeon and the ENT Dr. could coordinate a time. This means watching him have these episodes over the weekend (ugh!) and hoping he doesn't have another really bad one. The nurse says that as long as they are able to get him successfully sedated, they have no reason to do the trach yet as an emergency procedure. Whatever. Here's an idea: How about sedating him as soon as his pulse gets over 180, not 3 hours later when it is over 200?!?!?!
Anyway, there is a meeting scheduled for 2PM this afternoon with all the Drs. and nurses so we can get all of our questions answered. I am going to try to record the session using my cell phone so I can thoroughly document the proceedings later
I'm just about to go into Aidan's room this morning, but decided to post regardign what happened last night. The Guest Wireless Access was down last night, which is why I am updating now.
Aidan is still having the occassional episode/storm, but none have come anywhere close to how the really bad one was yesterday morning/afternoon. In general, he is calming himself down, but they did have to give a bolus of sedative last night when I was in there with him. They are putting shoes on his feet to prevent them from falling. They are also waiting for splints to come in to put on his hands/arms so his wrists won't be permanently turned inward. They have also started turning him every couple of hours to help loosen anything in his lungs, as well as prevent hot spots and bed sores from forming.
I finally got to see him open his eyes on his own last night. It was kinda like watching someone wake up from a nap, but he didn't really respond when I tried to make him notice me (me and the nurse would try to put a hand over one of his eyes neither the other eye nor his head moved in response). Erin said he did this when she was in there, but she was able to get a response from him. Maybe he just wasn't as sedated previously.
At this time, the tracheostomy is scheduled for Monday. IMO, this is far later than it should be, but apparently this was the earliest the surgeon and the ENT Dr. could coordinate a time. This means watching him have these episodes over the weekend (ugh!) and hoping he doesn't have another really bad one. The nurse says that as long as they are able to get him successfully sedated, they have no reason to do the trach yet as an emergency procedure. Whatever. Here's an idea: How about sedating him as soon as his pulse gets over 180, not 3 hours later when it is over 200?!?!?!
Anyway, there is a meeting scheduled for 2PM this afternoon with all the Drs. and nurses so we can get all of our questions answered. I am going to try to record the session using my cell phone so I can thoroughly document the proceedings later
- Thread Starter Thread Starter
- #70
i didnt get to talk to russ long tonight, he and erin both arent feeling well and he was going to head to bed for a while. Evan is feeling better though after his bout with flu, ear infection and pink eye. Anyway on to tonights update:
As I stated before in my most recent posting, we had a meeting this afternoon regarding where we stand and what's on deck for Aidan. At the meeting were Drs. s, F, and d (surgeon), as well as a representative for our social worker and the Aidan's nurse at the time. Here is what I can remember from the meeting:
* They are doing everything they can to subside the storms by using various drugs. The goal is to get him off IV drugs and move to oral medications that can be given through the gastro tube.
* The 280 heart rate I mentioned previously is a result of a high heart rate + any motion Aidan is performing. If he is shaking/trembling and has a heart rate at 180, you can see how the heart rate could look like 280.
* The tracheostomy and gastrostomy are scheduled to be performed at 11AM Monday morning. Recovery time after surgery would be 2-3 days.
* There will be an MRI and MRS scheduled after recovery. This will tell what progress, if any, has occurred since the last scan.
People from the whichever rehab center we choose to go to will asses Aidan before he is transported so they can formulate a course of action.
Right now, Erin and I are focusing our rehab centers within NC. We really don't like the idea of "moving" out-of-state for Aidan's rehab. Therefore, we are considering Charlotte Rehab Center along with one other, WakeMed in Raleigh.
As I stated before in my most recent posting, we had a meeting this afternoon regarding where we stand and what's on deck for Aidan. At the meeting were Drs. s, F, and d (surgeon), as well as a representative for our social worker and the Aidan's nurse at the time. Here is what I can remember from the meeting:
* They are doing everything they can to subside the storms by using various drugs. The goal is to get him off IV drugs and move to oral medications that can be given through the gastro tube.
* The 280 heart rate I mentioned previously is a result of a high heart rate + any motion Aidan is performing. If he is shaking/trembling and has a heart rate at 180, you can see how the heart rate could look like 280.
* The tracheostomy and gastrostomy are scheduled to be performed at 11AM Monday morning. Recovery time after surgery would be 2-3 days.
* There will be an MRI and MRS scheduled after recovery. This will tell what progress, if any, has occurred since the last scan.
People from the whichever rehab center we choose to go to will asses Aidan before he is transported so they can formulate a course of action.
Right now, Erin and I are focusing our rehab centers within NC. We really don't like the idea of "moving" out-of-state for Aidan's rehab. Therefore, we are considering Charlotte Rehab Center along with one other, WakeMed in Raleigh.
It just makes you want to grab someone by the collar and shout, "Is he gonna be all right?" Poor little guy... he and his parents are in my thoughts every day. Get better, sweetheart.
Im about ready to grab someone by the shirt and ask if he's alright!! Its heartbreaking even hearing about all this, much less going through it!! More vibes on the way!
Awww poor sweetheart - he's got a long road, but he sounds like the little fighter. are still coming his way from here.
- Thread Starter Thread Starter
- #74
todays update from Erin:
I did some research this evening regarding these "storms" that Aidan is having. Dr. S has called the condition "Autonomic Dysfunction Syndrome." This is just one of several terms. Another name for it is Paroxysmal Autonomic Instabilitly with Dystonia (PAID) Syndrome. It's basically characterized by elevated temperature, elevated blood pressure, elevated heart rate, agitation, and posturing (rigid muscles).
There are several drugs that they can use to treat this and Aidan is currently on a combination of them. There is no set therapy and we just have to see how he reacts to what he is on. This syndrome could go away in a few weeks to months to even a year or so. We are praying that it goes away soon. The literature I found is mostly in medical journals and is very difficult to read so I'll save you the headache of having to read it.
From what I've read and from what I saw on his last MRI it looks as though there may actually be some amount of "damage" or decreased oxygenation to the mid-brain area which is the part of the brain that controls the heart rate, blood pressure, etc.
As far as long term, I'm not sure how this is going to affect Aidan's recovery. I'm praying for the best though. He is only 2 and his brain still has a lot of growing to do.
I can't even begin to tell you how much I miss him. It is so hard to go into the boys' room and see his empty bed and know that it could be up to 6 months or longer until he is able to sleep in it again. I want so badly to hold him and hear him say "hey" or even hear him cry. I won't be able to do that until they take the trach out. I miss his hugs and his kisses and being exhausted from telling him to get out of stuff he's not supposed to be into.
This is the hardest thing I've ever had to endure and I don't think I'd wish it on my worst enemy. I think right now the unknown is what is making this difficult for me. That and just the sheer amount of time that this is going to take.
I did some research this evening regarding these "storms" that Aidan is having. Dr. S has called the condition "Autonomic Dysfunction Syndrome." This is just one of several terms. Another name for it is Paroxysmal Autonomic Instabilitly with Dystonia (PAID) Syndrome. It's basically characterized by elevated temperature, elevated blood pressure, elevated heart rate, agitation, and posturing (rigid muscles).
There are several drugs that they can use to treat this and Aidan is currently on a combination of them. There is no set therapy and we just have to see how he reacts to what he is on. This syndrome could go away in a few weeks to months to even a year or so. We are praying that it goes away soon. The literature I found is mostly in medical journals and is very difficult to read so I'll save you the headache of having to read it.
From what I've read and from what I saw on his last MRI it looks as though there may actually be some amount of "damage" or decreased oxygenation to the mid-brain area which is the part of the brain that controls the heart rate, blood pressure, etc.
As far as long term, I'm not sure how this is going to affect Aidan's recovery. I'm praying for the best though. He is only 2 and his brain still has a lot of growing to do.
I can't even begin to tell you how much I miss him. It is so hard to go into the boys' room and see his empty bed and know that it could be up to 6 months or longer until he is able to sleep in it again. I want so badly to hold him and hear him say "hey" or even hear him cry. I won't be able to do that until they take the trach out. I miss his hugs and his kisses and being exhausted from telling him to get out of stuff he's not supposed to be into.
This is the hardest thing I've ever had to endure and I don't think I'd wish it on my worst enemy. I think right now the unknown is what is making this difficult for me. That and just the sheer amount of time that this is going to take.
That's terrible. I hope everything works out.
Yeah, those med articles made my head spin, too. From what I read, it sounds like Aidan is getting the correct treatments. So, I am sending my prayers and to him and you.
- Thread Starter Thread Starter
- #77
todays update:
We just met with Dr. H about Aidan's surgery. He made it through the surgery without any complications. He now has a tube in his trachea as well as one in his belly (referred to as a "button"). He also currently has a NG tube for decompressing his stomach. All nutrition will be handled by IV during his recovery time and he will have the ventillator attached to his trach tube.
How long is recovery? At this time they have him paralyzed and he will remain that way for the next week. Therapists will still be able to work on his joints, etc., but he should not move on his own at all until next Monday. This means no storms (hopefully), but it also means he won't be interacting with us during that time.
This gives us about a week to come to a final decision on a rehab location. We're pretty sure we'll be going to the Carolinas Rehabilitation Center located within Levine Children's Hospital in Charlotte, though. Right now, we're just happy he is out of surgery and recovering
We just met with Dr. H about Aidan's surgery. He made it through the surgery without any complications. He now has a tube in his trachea as well as one in his belly (referred to as a "button"). He also currently has a NG tube for decompressing his stomach. All nutrition will be handled by IV during his recovery time and he will have the ventillator attached to his trach tube.
How long is recovery? At this time they have him paralyzed and he will remain that way for the next week. Therapists will still be able to work on his joints, etc., but he should not move on his own at all until next Monday. This means no storms (hopefully), but it also means he won't be interacting with us during that time.
This gives us about a week to come to a final decision on a rehab location. We're pretty sure we'll be going to the Carolinas Rehabilitation Center located within Levine Children's Hospital in Charlotte, though. Right now, we're just happy he is out of surgery and recovering
Thank goodness the surgery went well! Oh, I hope this is the beginning of a big upswing for him.
Am I right in thinking that his youth is a good thing in this situation, that because he's so young, his brain will have a better chance of reallocating functions and compensating for the damage?
So much love to Aidan...
Am I right in thinking that his youth is a good thing in this situation, that because he's so young, his brain will have a better chance of reallocating functions and compensating for the damage?
So much love to Aidan...
The very same thing happened here to one of the Doctors here, his daughter
was 3, she got out and fell in their pool, she has made a full recovery, they took her to Little Rock, Ark. St Jude's Children's Hospital, She and her mother stayed up there for a while! I saw her the other day and she was skipping
around downtown, this happened several yrs ago now!
So know that there is hope, and it sounds like he is a fighter, he has made it this far! youth is always a positive in any medical situation!
I do know that she had to learn to walk and talk all over again! but being so young, she did it fairly quick!!!!
I will pray for Aiden!! That is all any of us can do!! take care!
and stay positive no matter what! God is going to heal him!!!
Monique
was 3, she got out and fell in their pool, she has made a full recovery, they took her to Little Rock, Ark. St Jude's Children's Hospital, She and her mother stayed up there for a while! I saw her the other day and she was skipping
around downtown, this happened several yrs ago now!
So know that there is hope, and it sounds like he is a fighter, he has made it this far! youth is always a positive in any medical situation!
I do know that she had to learn to walk and talk all over again! but being so young, she did it fairly quick!!!!
I will pray for Aiden!! That is all any of us can do!! take care!
and stay positive no matter what! God is going to heal him!!!
Monique
carol I am so proud of you!!!!!!!!!!!!!!!!!!!!!!!look at that poem! girl, you got it to give, quit hiding it !! you are special!!! even in your grief you cared enough to write and send them a card! You are truly amazing! Don't forget that!!!!
