Aidan's visit with the ENT went well today. We've scheduled another bronchoscopy to be followed by decannulating (removing the trach), if all goes well. That will be in 3 weeks on August 20th. I'm excited about this, but then again, I'm scared. We'll most likely lose our private duty nursing as a result of the trach being removed, despite the fact that nothing else about Aidan's condition has changed. He's still on a ton of medication and he still has seizures, and he's still got a G-tube. It doesn't make any sense to me at all.
Aidan started back with the hyperbaric treatments this evening after taking a week off because of the ear infection. The ENT looked at his ear today and said it looked great. We've got to work in some of the appointments we've missed and hopefully get him up to where he can tolerate more pressure.
My appointment on Tuesday went okay. I met with the surgeon and they scheduled me for an abdominal/pelvic CT scan for tomorrow morning. After that I'll go back for a follow-up with him and then probably see a plastic surgeon to see about getting the extra skin removed when they repair the hernia. I'll know more once they get the CT results back.
It's been pretty busy the past few days. I'm hoping we get some more people registered for the golf tournament since we have until the 4th to get the registration forms in. We really appreciate everyone's support and all of the fundraising that people have done. We recieved $1200 from the Sons of Confederates for the Poker Run that they had last month. We had some pictures made with the guys last night, so I'll post them once they are emailed to me.
Thank you all for your continued prayers. Without them, I'm not sure where we'd be. I'll leave with another bit of info- Aidan looked at me this afternoon and grinned. I was so surprised that I had to make sure it wasn't a seizure first, but it wasn't. My little boy is coming out of this... I don't know how long it's going to take, but I'm going to fight for him as long as I have to.
Erin
Wednesday, July 30, 2008
Tuesday, July 29, 2008
Golf Tournament Registration Update
Erin posted that the deadline for registering for the tournament was August 1st, but that was before I talked with the golf course yesterday. The tournament coordinator there is not going to be in town this weekend, so he was was gracious enough to give me the weekend to pull in more players. The deadline is now August 4th.
If you live in the area and want to play in this tournament, please go to http://www.golfingforaidan.com/register.html to register for the tournament. You can either register through the storefront or by simply emailing the information to register@golfingforaidan.com. We have some new things that have just been added to the tournament that should make it very exciting and fun for everyone.
Thanks!
Russell
If you live in the area and want to play in this tournament, please go to http://www.golfingforaidan.com/register.html to register for the tournament. You can either register through the storefront or by simply emailing the information to register@golfingforaidan.com. We have some new things that have just been added to the tournament that should make it very exciting and fun for everyone.
Thanks!
Russell
Monday, July 28, 2008
a pretty good weekend
This weekend was pretty good. Aidan is doing well. I think he's getting over the ear infection. The physical therapist brought a loaner stander for us to use on Friday. I was so excited about getting him in it. We put him in it for 30 minutes and he did really, really well. He actually started falling asleep. I got him standing in it up to about 45 minutes on Sunday.
Saturday, Russell and I went to a concert. We went to the the Avett Brothers. I went to school with them. They play a very interesting mix of bluegrass and rock music. The show was 2 hours away, in Cary. My aunt Bev came up to watch the boys. Aidan's nurse was here part of the time so that helped out some, I hope. She said they both did well. I really enjoyed the concert. It was nice to get away and Russell and I managed not to talk about the kids except for a couple of times (I think).
Sunday was a pretty good day for Aidan. He had a bit of a rough night, so he slept most of the morning, but he was in a good mood most of the afternoon. We put the PMV on him and he wore it about 6 hours or so. He does so well with both the PMV and the cap. All afternoon he was "talking". He kept making different sounds like he was trying to form a word because it wasn't just a single sound like "oh". I love hearing his voice. I can't stand to hear him crying though. It just breaks my heart.
That's about all we did. I have my appointment with the surgeon tomorrow about my hernia, and Aidan goes back to the ENT on Wednesday. Hopefully we'll talk about downsizing his trach then. We'll have to see. I'm hoping that the ear infection and the congestion he's had hasn't put us behind on that progress, since I haven't felt comfortable capping him much during the last week.
Thank you all for the continued support and prayers. Please pray that we have more people register for the golf tournament this week. The deadline is the 1st for registration. We had a group offer to help us with some prizes so there are some really great prizes if people register for the mulligan package. Russell has put all the information on the Golfing for Aidan website.
Thanks!
~Erin
Saturday, Russell and I went to a concert. We went to the the Avett Brothers. I went to school with them. They play a very interesting mix of bluegrass and rock music. The show was 2 hours away, in Cary. My aunt Bev came up to watch the boys. Aidan's nurse was here part of the time so that helped out some, I hope. She said they both did well. I really enjoyed the concert. It was nice to get away and Russell and I managed not to talk about the kids except for a couple of times (I think).
Sunday was a pretty good day for Aidan. He had a bit of a rough night, so he slept most of the morning, but he was in a good mood most of the afternoon. We put the PMV on him and he wore it about 6 hours or so. He does so well with both the PMV and the cap. All afternoon he was "talking". He kept making different sounds like he was trying to form a word because it wasn't just a single sound like "oh". I love hearing his voice. I can't stand to hear him crying though. It just breaks my heart.
That's about all we did. I have my appointment with the surgeon tomorrow about my hernia, and Aidan goes back to the ENT on Wednesday. Hopefully we'll talk about downsizing his trach then. We'll have to see. I'm hoping that the ear infection and the congestion he's had hasn't put us behind on that progress, since I haven't felt comfortable capping him much during the last week.
Thank you all for the continued support and prayers. Please pray that we have more people register for the golf tournament this week. The deadline is the 1st for registration. We had a group offer to help us with some prizes so there are some really great prizes if people register for the mulligan package. Russell has put all the information on the Golfing for Aidan website.
Thanks!
~Erin
Friday, July 25, 2008
I dream of Aidan....
For the first time in over 5 months I had a dream that I remembered and it was about Aidan. This was Wednesday night. I dreamed that I had left to go somewhere and he was like he is now, but when I came back he was his normal self- running around and playing with the roller coaster table that Evan got for his birthday. I didn't want to wake up. It was so nice to hear him laughing and see him smiling in my dream.
Today, Aidan's physical therapist brought us a stander to use until ours is delivered (at this rate,he may be 10 before it ever arrives). He did really well in it and stood at about a 50 degree angle for 30 minutes. He didn't fuss at all when we put him in it. I was so excited to get him standing and bearing weight through his legs again.
That's all that going on right now, I'll post more later this weekend. :)
~Erin
Today, Aidan's physical therapist brought us a stander to use until ours is delivered (at this rate,he may be 10 before it ever arrives). He did really well in it and stood at about a 50 degree angle for 30 minutes. He didn't fuss at all when we put him in it. I was so excited to get him standing and bearing weight through his legs again.
That's all that going on right now, I'll post more later this weekend. :)
~Erin
Wednesday, July 23, 2008
an interesting evening...
Yesterday was Aidan's speech therapy day. He did really well and was swallowing a lot. He was having a lot of secretions so we hadn't capped him or put his PMV on, but I put it on him after his therapy was over. He was actually vocalizing some. Just sounds like "oh" and the like. I talked to him and then he would "answer" back. We did that for a few minutes. He amazes me every single day. I definitely think he is aware of much more than we think he is. I can't even imagine how hard it is for him.
So, anyway, after his nurse left yesterday, Aidan started to fall asleep so I put him in his bed. He slept for a long time, and when he woke up around 5 or so he started storming. It was like someone turned on a switch because he went from being asleep to being upset in no time. His lungs sounded horrible, so my mom and I gave him a breathing treatment and did some chest PT to loosen up anything in his lungs so he could cough it out. I finally ended up calling our doctor and asked her to come out to the house to check him out.
By the time she got here around 7pm, his meds had started to work and he was calm and trying to go back to sleep. His lungs sounded much better then, but she looked in his ears, and his right eardrum was red and bulging. The left looked fine. So he has an ear infection. She called in some augmentin for him so that should help clear it up and anything he might have in his lungs.
We had to cancel his hyperbaric treatments until next Wednesday because of the ear infection. It is just so hard sometimes when he can't tell us what is wrong. Aidan has only had 2 other ear infections and with each of them he was miserable. It's not like he can pull on his ears to let me know that they are bothering him, like Evan does.
I went to the doctor myself yesterday morning (same as Aidan's). I found out that I have a hernia (fun, fun). She also prescribed me an anti-depressant. I was really against taking anything at first. I wanted to get through this without meds, but sometimes you just have to bite the bullet and take medicine. I have to take care of myself if I'm going to take care of my boys. I have an appointment next week with a surgeon to find out about getting the hernia repaired. It may require a plastic surgeon consult as well because I have a lot of loose skin from losing so much weight, and the hernia is in my lower abdomen, just above my c-section scars.
So that is what has been going on at our house. It's a never ending 3-ring circus. I just pray that this ear infection doesn't affect his appointment next week with the ENT. Thanks for the support and prayers everyone! I'll update more later.
~Erin
So, anyway, after his nurse left yesterday, Aidan started to fall asleep so I put him in his bed. He slept for a long time, and when he woke up around 5 or so he started storming. It was like someone turned on a switch because he went from being asleep to being upset in no time. His lungs sounded horrible, so my mom and I gave him a breathing treatment and did some chest PT to loosen up anything in his lungs so he could cough it out. I finally ended up calling our doctor and asked her to come out to the house to check him out.
By the time she got here around 7pm, his meds had started to work and he was calm and trying to go back to sleep. His lungs sounded much better then, but she looked in his ears, and his right eardrum was red and bulging. The left looked fine. So he has an ear infection. She called in some augmentin for him so that should help clear it up and anything he might have in his lungs.
We had to cancel his hyperbaric treatments until next Wednesday because of the ear infection. It is just so hard sometimes when he can't tell us what is wrong. Aidan has only had 2 other ear infections and with each of them he was miserable. It's not like he can pull on his ears to let me know that they are bothering him, like Evan does.
I went to the doctor myself yesterday morning (same as Aidan's). I found out that I have a hernia (fun, fun). She also prescribed me an anti-depressant. I was really against taking anything at first. I wanted to get through this without meds, but sometimes you just have to bite the bullet and take medicine. I have to take care of myself if I'm going to take care of my boys. I have an appointment next week with a surgeon to find out about getting the hernia repaired. It may require a plastic surgeon consult as well because I have a lot of loose skin from losing so much weight, and the hernia is in my lower abdomen, just above my c-section scars.
So that is what has been going on at our house. It's a never ending 3-ring circus. I just pray that this ear infection doesn't affect his appointment next week with the ENT. Thanks for the support and prayers everyone! I'll update more later.
~Erin
Thursday, July 17, 2008
okay, maybe I shouldn't have watched that....
Many of you all who know me, know that I love medical shows. For as long as I can remember when I was a kid, I wanted to be a nurse. After starting nursing school I decided that it wasn't for me, at the time. Anyway, I've always watched surgery shows and medical shows, and I can handle seeing a lot of stuff. Well, tonight I started watching Hopkins on ABC... big mistake! For those that didn't watch it, there was a 2 1/2 year old little boy who had an enlarged heart. At one point they put him to sleep and there were complications that resulted in them having to start CPR... I lost it. I could not watch any more of the show until the end when they showed the little boy getting a heart transplant. Just seeing them doing CPR and then later watching the mother's reaction to the doctor's telling her that her son might die, just made me crumble inside. That is a feeling of complete helplessness and heartache I don't ever want to experience again.
On a good note- Aidan is doing awesome as far as capping his trach goes. Last night the nurse capped him for 2 hours straight and then this afternoon he went for 2 hours and 40 minutes. His O2 sats were 97-99 and occasionally went up to 100%. He had OT this afternoon and the therapist and nurse noted that he is breathing through his nose almost exclusively when he is capped, which is great! His breathing isn't as shallow or fast so that is really good too.
The therapist was working with Aidan to try to turn his head to follow a toy or my voice. It seems like he is trying and he is definitely following the sound with his eyes. He was exhausted by the end of the session and was asleep before the therapist left.
The church that I grew up in has gotten together and organized a yard sale for this Saturday to help raise money for Aidan so that we can purchase even more therapy equipment/devices for him. I can't even begin to express my gratitude for the outpouring of support and prayer for Aidan and our family. We are so blessed to have so many people all over the world who have been touched by our little man and who have in turn touched our lives in so many ways. So, however simple the phrase, THANK YOU!
edited to add: Aidan has been squeezing our fingers when we ask him to. At first I thought he might just be doing it during a seizure, but he's consistently done it with my mom, my mamaw and me. It's a little slow sometimes and a little weak, but you can definitely feel him squeeze and relax and then squeeze again. I've also noticed more seizure activity when he would normally respond to someone or something. For instance, the other evening, Mom was talking to Mamaw on the phone and she had the speaker on so Mamaw could talk to Aidan and when he would have normally responded, he had a little seizure, he actually had two. To me it seems like the increased brain activity is triggering the seizure response. I'm not sure if it's a good thing or bad thing. I think it's good that he's having the increased activity and wants to respond or interact, we just have to get the seizures under control.
On a good note- Aidan is doing awesome as far as capping his trach goes. Last night the nurse capped him for 2 hours straight and then this afternoon he went for 2 hours and 40 minutes. His O2 sats were 97-99 and occasionally went up to 100%. He had OT this afternoon and the therapist and nurse noted that he is breathing through his nose almost exclusively when he is capped, which is great! His breathing isn't as shallow or fast so that is really good too.
The therapist was working with Aidan to try to turn his head to follow a toy or my voice. It seems like he is trying and he is definitely following the sound with his eyes. He was exhausted by the end of the session and was asleep before the therapist left.
The church that I grew up in has gotten together and organized a yard sale for this Saturday to help raise money for Aidan so that we can purchase even more therapy equipment/devices for him. I can't even begin to express my gratitude for the outpouring of support and prayer for Aidan and our family. We are so blessed to have so many people all over the world who have been touched by our little man and who have in turn touched our lives in so many ways. So, however simple the phrase, THANK YOU!
edited to add: Aidan has been squeezing our fingers when we ask him to. At first I thought he might just be doing it during a seizure, but he's consistently done it with my mom, my mamaw and me. It's a little slow sometimes and a little weak, but you can definitely feel him squeeze and relax and then squeeze again. I've also noticed more seizure activity when he would normally respond to someone or something. For instance, the other evening, Mom was talking to Mamaw on the phone and she had the speaker on so Mamaw could talk to Aidan and when he would have normally responded, he had a little seizure, he actually had two. To me it seems like the increased brain activity is triggering the seizure response. I'm not sure if it's a good thing or bad thing. I think it's good that he's having the increased activity and wants to respond or interact, we just have to get the seizures under control.
Monday, July 14, 2008
date set for 24hr EEG
The doctor's office called on Friday to let me know that Aidan's EEG will be August 5th. We'll have to check in early that morning and stay on the peds floor overnight. I hope that this will give us some insight about which behavior goes with which type of seizure he's having. I just wish this nightmare would end already.
We didn't have a nurse Saturday night because of some mass confusion with the staffing. We had someone on OUR schedule, but the office said it was open and when someone wanted to take the shift, they were told it was already filled. It's just extremely frustrating. It isn't that I can't take care of Aidan- I know how to take care of him as far as his medical needs go. I just get very overwhelmed taking care of him when I'm completely alone with him. It is emotionally draining. I'll be honest, last week when it was just me and him (Evan was at my aunt's), I just laid down beside him and cried. I can't help but remember how he used to be and how he used to make me laugh by doing all kinds of silly stuff. I miss how our days used to be and I'm sad. I'm so unbelievably sad. Anyway, I know this blog is supposed to be about Aidan and not my daily whining and moping... I just have a hard time putting that aside.
Aidan is doing well. He seems more alert to me. He's been watching TV (at least it looks like he's watching). He's been tolerating being capped, and we're working on increasing the amount of time that he is capped, but I think once we downsize his trach tube it will help and make it even easier on him. He's been a little fussier than usual, and I don't really know why. We should be getting the passy-muir valves today or tomorrow as well as his formula supplement so we can decrease the volume and go back to our normal feeding schedule. Feeding him every 2 hours is a pain. Other than that, we don't have any hyperbaric treatments scheduled until Friday, the center didn't have any openings, so unless they have a cancellation we're taking a few days off. It'll be nice not to have to go somewhere every day.
I'd like to thank everyone who's donated money for Aidan's treatments. I know that I have mentioned this, but for now, we've decided to hold off on purchasing a soft hyperbaric chamber. We decided that we want Aidan to do the hard treatments and then at a later point, we may look into buying a chamber. Right now, since we live with my mom, we don't have anywhere to put something that big. Aidan's equipment is already taking up a lot of space and he has to have a room to himself. We are hoping to find a house to rent in the near future, but we can't really make that decision until Russell has a permanent job. We have been looking into other types of treatments and therapies, and I'm considering buying a biofeedback unit. They are usually used to treat pain, which I'm sure Aidan does have, but it's also been helpful with the healing process. I'm not sure how to explain it, I've done most of my reading about it on Abby's website (prayforabby.com) and Dr. Tennent's website.
Once school starts back, the Governor Morehead Preschool program will come in to start vision therapy with Aidan. I've had a referral from our neurologist for another place that does vision therapy, as well. We're still doing PT, OT and Speech Therapy. I got Aidan a hammock swing so we can use that in part of his therapy and the PT table has been made for us. Things are moving in the right direction for Aidan.
Thank you for all of your prayers and support. Despite how bad I've been feeling lately, it helps to know that you all are out there. I just have to keep praying and have hope that my son is going to get better.
~Erin
We didn't have a nurse Saturday night because of some mass confusion with the staffing. We had someone on OUR schedule, but the office said it was open and when someone wanted to take the shift, they were told it was already filled. It's just extremely frustrating. It isn't that I can't take care of Aidan- I know how to take care of him as far as his medical needs go. I just get very overwhelmed taking care of him when I'm completely alone with him. It is emotionally draining. I'll be honest, last week when it was just me and him (Evan was at my aunt's), I just laid down beside him and cried. I can't help but remember how he used to be and how he used to make me laugh by doing all kinds of silly stuff. I miss how our days used to be and I'm sad. I'm so unbelievably sad. Anyway, I know this blog is supposed to be about Aidan and not my daily whining and moping... I just have a hard time putting that aside.
Aidan is doing well. He seems more alert to me. He's been watching TV (at least it looks like he's watching). He's been tolerating being capped, and we're working on increasing the amount of time that he is capped, but I think once we downsize his trach tube it will help and make it even easier on him. He's been a little fussier than usual, and I don't really know why. We should be getting the passy-muir valves today or tomorrow as well as his formula supplement so we can decrease the volume and go back to our normal feeding schedule. Feeding him every 2 hours is a pain. Other than that, we don't have any hyperbaric treatments scheduled until Friday, the center didn't have any openings, so unless they have a cancellation we're taking a few days off. It'll be nice not to have to go somewhere every day.
I'd like to thank everyone who's donated money for Aidan's treatments. I know that I have mentioned this, but for now, we've decided to hold off on purchasing a soft hyperbaric chamber. We decided that we want Aidan to do the hard treatments and then at a later point, we may look into buying a chamber. Right now, since we live with my mom, we don't have anywhere to put something that big. Aidan's equipment is already taking up a lot of space and he has to have a room to himself. We are hoping to find a house to rent in the near future, but we can't really make that decision until Russell has a permanent job. We have been looking into other types of treatments and therapies, and I'm considering buying a biofeedback unit. They are usually used to treat pain, which I'm sure Aidan does have, but it's also been helpful with the healing process. I'm not sure how to explain it, I've done most of my reading about it on Abby's website (prayforabby.com) and Dr. Tennent's website.
Once school starts back, the Governor Morehead Preschool program will come in to start vision therapy with Aidan. I've had a referral from our neurologist for another place that does vision therapy, as well. We're still doing PT, OT and Speech Therapy. I got Aidan a hammock swing so we can use that in part of his therapy and the PT table has been made for us. Things are moving in the right direction for Aidan.
Thank you for all of your prayers and support. Despite how bad I've been feeling lately, it helps to know that you all are out there. I just have to keep praying and have hope that my son is going to get better.
~Erin
Thursday, July 10, 2008
a few new pictures and an update
The first photo is one I took last week sometime. The others were taken today. One was during Aidan's OT session. It was the first time we had him positioned that way, he tolerated it pretty well. I love the last picture because if you had told me that Aidan would be flexible enough to be positioned like that when he was still in the hospital, I'd have laughed my butt off.
We met with the pediatric ENT yesterday after an interesting hour and a half wait (I was on time) but there was some confusion and the doctor had to go to surgery. We have another appointment in 3 weeks and in the meantime we are to work on capping off Aidan's trach. We have a little cap that we put over the end of his trach and he has to completely breathe on his own. I started with him yesterday for 30 minutes and he did great. His O2 sats were between 97 and 99% and we capped him off a couple more times for up to 45 minutes and again he did really well. We even capped him when he was asleep and his sats didn't drop at all.
Our goal is to get him to where he is capped more often that he isn't and once he is able to tolerate it for 24 hours consecutive, he should be able to have the trach removed. He'll have to be observed overnight in ICU with the trach capped to make sure he is doing okay before they'll make the decision, but we're still hoping for the end of the summer or early fall to have the trach removed... maybe sooner if Aidan continues to do well.
As far as this goes, this is exactly what I've been hoping for. I just wish I could get more concrete answers when it comes to his neurological status, but that just isn't the nature of the brain.
We're looking into vision therapy for Aidan and I haven't gotten a call about the 24 hour EEG yet, so when I know more, I'll let everyone know.
Thank you for all of the prayers and support and for understanding my anger and grief. I feel like I'm on a crazy emotional rollercoaster and I just want it to be over.
Thanks again!
Erin
Tuesday, July 8, 2008
So, we met with the neurologist yesterday. Apparently I misunderstood him regarding the last 2 hour EEG that was done. Aidan only had one seizure episode during that 2 hour period and it was toward the end of the test. They were able to video tape it and compare the video with the actual EEG. The results were somewhat inconclusive because Aidan was having multi-focal seizures, meaning they were happening in two separate parts of the brain. One looks like an epileptic seizure and the other is most likely from storming activity (which are actually seizures happening deeper in the brain). Sometimes he's having them separately, but at times they both occur at the same time. We're supposed to have a 24 hour EEG scheduled soon. We're just waiting on a call for it to be scheduled.
As for the MRI, the doctor reviewed the images with me. It's one thing to hear the results and another entirely different thing to actually SEE the images. If you don't know what the brain should look like when it isn't damaged, it's quite confusing. Considering that I know enough about medicine to be dangerous to myself and my own imagination, the images distress me. I'm not going to lie. Aidan's brain is very damaged. Being without oxygen for nearly an hour did a lot of damage. I want answers, I've wanted answers from the beginning and they just can't give them to me. I asked how much of Aidan's brain is still functional or viable, they just can't say. I want to know if the damage is reversible, if Aidan will ever be able to do "normal" stuff again, or if he's going to be in a vegetative state for the rest of his life. They just can't tell me anything really. It's frustrating and heartbreaking.
I'm angry... I'm angry at myself most of all. If I hadn't cared so damn much about having a stupid birthday party for him, he wouldn't have been outside in the first place. If I had listened to my first instinct to take him inside with me while we finished unloading the van, he would have been safe, but I didn't. I didn't want to upset him when he just wanted to play outside. I'm angry that none of the doctors can give me definite answers to my questions regarding Aidan's prognosis and the more they can't tell me the more I'm afraid he'll never recover. Aidan didn't deserve this. He deserves to run and play and laugh and grow up and do all the things that little boys do. He doesn't deserve to be immobile and trapped in a body with a brain that isn't functioning normally. People ask me all the time if he recognizes things, if he feels pain, etc. and I feel stupid for telling the "I don't know." But I don't know. I don't know what Aidan recognizes, I don't know if he feels pain or joy because he can't tell me or convey that to me. I can only assume that because he's crying and making pained faces that he's hurting. He doesn't smile (consistently) or laugh to show joy, so I don't know.
I want nothing more than for Aidan to walk, and talk, laugh and smile and run around and play with his brother and the dogs. I want him to drive me crazy because I have to tell him again and again not to climb on things or to leave the TV alone or to stay out of something he's not supposed to be in. I'd rather deal with his night terrors and waking up in the middle of the night than to do this... I'd do it in a heartbeat.
Logically, I know that because his brain is still growing and because he is so small his chances of improving are better than if he was older. I know that we're trying to do everything possible to get him the treatments and things he needs to stimulate his senses and his brain so that he can recover. Emotionally, I'm a basketcase though. My fuse is beyond short and I'm tired and I'm miserable. I make everyone around me miserable, too, and I'm sorry for it. I would have rather drowned in that pond than Aidan. At least then I'd know that I'd lived part of my life and I'd brought two of the most beautiful little boys into the world and that they would be taken care of by Russell and family that loves them.
So, for now that's all the news that I have. As far as the spect scan goes, the information that I shared the other day is all I got. There are no blockages in the blood flow in his brain. I will have to wait until tomorrow to see about getting the images. He has an appointment with the pediatric ENT to discuss the passy-muir and to get instruction on it and a schedule for him to wear it. I will post more tomorrow night or Thursday.
Sorry for being so depressing, I'm just not doing very good at dealing with this right now. I guess I've hit the anger stage of grieving.
Thank you to everyone for your continued prayers and concern for Aidan and his recovery. When I'm having a good day and able to deal with everything, I know he's going to get better and that it's just going to take time. For right now, I'm down, and I just have to deal with it and try to get better.
Erin
As for the MRI, the doctor reviewed the images with me. It's one thing to hear the results and another entirely different thing to actually SEE the images. If you don't know what the brain should look like when it isn't damaged, it's quite confusing. Considering that I know enough about medicine to be dangerous to myself and my own imagination, the images distress me. I'm not going to lie. Aidan's brain is very damaged. Being without oxygen for nearly an hour did a lot of damage. I want answers, I've wanted answers from the beginning and they just can't give them to me. I asked how much of Aidan's brain is still functional or viable, they just can't say. I want to know if the damage is reversible, if Aidan will ever be able to do "normal" stuff again, or if he's going to be in a vegetative state for the rest of his life. They just can't tell me anything really. It's frustrating and heartbreaking.
I'm angry... I'm angry at myself most of all. If I hadn't cared so damn much about having a stupid birthday party for him, he wouldn't have been outside in the first place. If I had listened to my first instinct to take him inside with me while we finished unloading the van, he would have been safe, but I didn't. I didn't want to upset him when he just wanted to play outside. I'm angry that none of the doctors can give me definite answers to my questions regarding Aidan's prognosis and the more they can't tell me the more I'm afraid he'll never recover. Aidan didn't deserve this. He deserves to run and play and laugh and grow up and do all the things that little boys do. He doesn't deserve to be immobile and trapped in a body with a brain that isn't functioning normally. People ask me all the time if he recognizes things, if he feels pain, etc. and I feel stupid for telling the "I don't know." But I don't know. I don't know what Aidan recognizes, I don't know if he feels pain or joy because he can't tell me or convey that to me. I can only assume that because he's crying and making pained faces that he's hurting. He doesn't smile (consistently) or laugh to show joy, so I don't know.
I want nothing more than for Aidan to walk, and talk, laugh and smile and run around and play with his brother and the dogs. I want him to drive me crazy because I have to tell him again and again not to climb on things or to leave the TV alone or to stay out of something he's not supposed to be in. I'd rather deal with his night terrors and waking up in the middle of the night than to do this... I'd do it in a heartbeat.
Logically, I know that because his brain is still growing and because he is so small his chances of improving are better than if he was older. I know that we're trying to do everything possible to get him the treatments and things he needs to stimulate his senses and his brain so that he can recover. Emotionally, I'm a basketcase though. My fuse is beyond short and I'm tired and I'm miserable. I make everyone around me miserable, too, and I'm sorry for it. I would have rather drowned in that pond than Aidan. At least then I'd know that I'd lived part of my life and I'd brought two of the most beautiful little boys into the world and that they would be taken care of by Russell and family that loves them.
So, for now that's all the news that I have. As far as the spect scan goes, the information that I shared the other day is all I got. There are no blockages in the blood flow in his brain. I will have to wait until tomorrow to see about getting the images. He has an appointment with the pediatric ENT to discuss the passy-muir and to get instruction on it and a schedule for him to wear it. I will post more tomorrow night or Thursday.
Sorry for being so depressing, I'm just not doing very good at dealing with this right now. I guess I've hit the anger stage of grieving.
Thank you to everyone for your continued prayers and concern for Aidan and his recovery. When I'm having a good day and able to deal with everything, I know he's going to get better and that it's just going to take time. For right now, I'm down, and I just have to deal with it and try to get better.
Erin
Friday, July 4, 2008
Happy 4th of July!
I hope that everyone had a safe and happy 4th of July. We didn't do anything today. Russell was off of work so he, Evan and I ran some errands while the nurse was here with Aidan. Then we just hung out at home until time to leave for Aidan's hyperbaric appointment at 7:30. I took Evan down to my aunt's house to visit. She and my grandpa were cementing posts for a privacy fence. It was just nice to get out of the house for a little while.
Aidan did okay with his treatment, but he sweats so badly as they are bringing them back up to normal pressure that his clothes were soaked. He is exhausted after the treatments usually. In the soft chamber we were able to bring in a little battery operated fan, but because of the fire hazard we can't take anything in the hard chambers. They have a couple of valves that can be opened to allow some cooler air to circulate though.
I'll post more after Monday when we talk to the neurologist about the MRI and the SPECT scan. I'm hoping to have the images then as well.
Have a great weekend!
Erin
Aidan did okay with his treatment, but he sweats so badly as they are bringing them back up to normal pressure that his clothes were soaked. He is exhausted after the treatments usually. In the soft chamber we were able to bring in a little battery operated fan, but because of the fire hazard we can't take anything in the hard chambers. They have a couple of valves that can be opened to allow some cooler air to circulate though.
I'll post more after Monday when we talk to the neurologist about the MRI and the SPECT scan. I'm hoping to have the images then as well.
Have a great weekend!
Erin
Thursday, July 3, 2008
Frustrations
I am so fed up with deal with our stupid government agencies. Jumping through one hoop after another just to get services for Aidan when he genuinely needs them. I guess dealing with the stress related to his condition isn't enough... let's throw the added stress of dealing with the government and all of their bureaucratic BS on top of it. It's enough to make a normal person crazy.... and I don't think I rank up there with "normal" lately.
Oh, well... just had to get that off of my chest. Sorry for ranting, but I'm sure some of you understand where I'm coming from.
Oh, well... just had to get that off of my chest. Sorry for ranting, but I'm sure some of you understand where I'm coming from.
Wednesday, July 2, 2008
Raffle info
I wanted to take this chance to show everyone the pictures of the "Forever birdhouse and feeder" that have graciously been donated by Brian and Betty Owen from Owen Clay Works in Sanford, NC.
These are one-of-a-kind pieces of pottery and they are very beautiful. The birdhouse has 8 separate "living areas". Both are easy to clean and maintain. Please check out Betty's webpage to find out more about her art. http://www.owenclayworks.com/
The drawing for these will be August 9th at the golf tournament. The tickets are $1 each or $5 for 6 tickets. There will be two separate drawings, so you have 2 chances to win. Each of these pieces sell for $225 each.
If you are interested in purchasing tickets please email me (erinwright78@gmail.com) and let me know. You can mail payment to the address listed on the left side of the screen.
Thanks everyone!
These are one-of-a-kind pieces of pottery and they are very beautiful. The birdhouse has 8 separate "living areas". Both are easy to clean and maintain. Please check out Betty's webpage to find out more about her art. http://www.owenclayworks.com/
The drawing for these will be August 9th at the golf tournament. The tickets are $1 each or $5 for 6 tickets. There will be two separate drawings, so you have 2 chances to win. Each of these pieces sell for $225 each.
If you are interested in purchasing tickets please email me (erinwright78@gmail.com) and let me know. You can mail payment to the address listed on the left side of the screen.
Thanks everyone!
Tuesday, July 1, 2008
preliminary SPECT news
I got a call from the neurologist's office a little bit ago. I only talked with the nurse, but she said the doctor had reviewed the scan and said that everything looks "really good" and that there is good blood flow. I won't be able to see the images until next Monday, but I'm really anxious now. I'm going to try to get copies of all of his MRI, CT and SPECT images so that we can post them on here. When we're done with the 120 hyperbaric treatments we'll see about getting another SPECT done so we can see the changes.
I'm extremely hopeful. I'm so ready to get Aidan back. I've really, really been missing seeing him do all the things he used to do. More than anything though, I'd love to see him smile and laugh like he used to, or hear him say "mama". In time I know he will do all of that, I just have to be patient.
Just wanted to share that news with you all!
I'm extremely hopeful. I'm so ready to get Aidan back. I've really, really been missing seeing him do all the things he used to do. More than anything though, I'd love to see him smile and laugh like he used to, or hear him say "mama". In time I know he will do all of that, I just have to be patient.
Just wanted to share that news with you all!
update
Sorry for not writing sooner, I've just been exhausted lately. Aidan had an appointment last Thursday with the surgeons who did his trach and g-tube. It was just a follow-up visit, but we ended up going down to radiology to have a reflux test done. We found out pretty quickly that Aidan has reflux. He had been spitting up more and more and had been vomiting pretty regularly after his feedings. The surgeon had us decrease his feedings to 90ml every 2 hours until I could come in today to meet with him and the nutritionist to discuss other options.
Let's just say it isn't exactly convenient to feed him every 2 hours, not when he has to have therapies and meds worked into that schedule as well.
We had a pretty good weekend. I don't remember a whole lot of it to be honest. Like I said, I'm exhausted. I took Aidan to his hyperbaric session on Saturday. It was my first time in the hard chamber with him. It was okay. Aidan was pretty calm throughout most of the time. Toward the end he started to get upset, mainly because he was hungry and wet. He was looking around a lot more and at one point he looked at me and I just felt like he knew who I was because he could actually "see" me. Then he started moving his mouth like he was trying to make a sound, maybe not a word, but a sound. It wasn't like he usually does when he "chews." I didn't cover his trach because I didn't want to upset him, but I wish that I had to see if he was actually trying to make some sounds. I got Aidan loaded in the car just in time for a storm to just dump on us. It was an interesting hour drive home.
Yesterday (Monday) was Aidan SPECT scan and Russell's first day on the job. I had to take Russell to work and then get Aidan to the hospital and get him checked in. We were about 30 minutes late because of traffic. They got him settled in and got him under anesthesia and after about an hour the nuclear med tech came out to get me. I thought they might be done already, but she apparently neeeded me to "wake Aidan up." I got worried because she said they had brought him back out of the anesthesia and needed him to open his eyes before she could inject a contrast. So I spent 30 minutes trying to get him to open his eyes. Finally, he opened his eyes and I was able to go back out and let them finish. They ended up having to scan him again because they needed to get better images. So instead of him being back there for about an hour and a half he was back there for about 4 hours total. We finally got to leave around 1:40 yesterday afternoon.
Today was the ENT consult to get the PMV. That was a complete waste of time. The pulmonologist's office made the appointment for us. And being that they aren't familiar with doctors affiliated with NorthEast, they sent us to a regular ENT, not one that specializes in pediatrics. I asked them when they called to tell me about the appointment if they were sure this is where they wanted me to go. I thought they were going to make the appointment with Dr. D who is a pretty well known pediatric ENT who was actually supposed to do Aidan's tracheostomy, but couldn't coordinate his schedule with the other surgeon's. Anyway, the ENT we saw today wrote me a prescription for the PMV's but is referring us over to Dr. D to manange Aidan's trach and PMV schedule.
After that, I went to meet with the nutritionist and the surgeon. The surgeon wasn't able to talk with me then (he's supposed to call later). The nutritionist and I discussed 2 options to dealing with Aidan's feedings. 1: we feed him 4 times a day with a pump at night to make up the feedings or 2: we feed him 6 times a day and add something to his formula that gives it more calories with less volume, it's called Benecalorie. I'm trying it in the rest of his feedings today to see how he tolerates it, otherwise we're looking at the pump overnight.
So that's your update for the past week while I was being slack.
I'd like to mention a new fundraiser going on. It's a raffle for a birdfeeder and a birdhouse. These are one of a kind, pottery donated to us by Betty Owen. Betty is one of our nurses step-mother. She really is an artist and the bird house and feeder are really pretty. We're selling the tickets for $1 each or 6 for $5. There will be a drawing for each item so you will have two chances to win. If anyone is interested in buying tickets just email me and I'll get the information to you. I will post pictures in another posting so you can see them.
Thanks everyone for your prayers and support!
Erin
Let's just say it isn't exactly convenient to feed him every 2 hours, not when he has to have therapies and meds worked into that schedule as well.
We had a pretty good weekend. I don't remember a whole lot of it to be honest. Like I said, I'm exhausted. I took Aidan to his hyperbaric session on Saturday. It was my first time in the hard chamber with him. It was okay. Aidan was pretty calm throughout most of the time. Toward the end he started to get upset, mainly because he was hungry and wet. He was looking around a lot more and at one point he looked at me and I just felt like he knew who I was because he could actually "see" me. Then he started moving his mouth like he was trying to make a sound, maybe not a word, but a sound. It wasn't like he usually does when he "chews." I didn't cover his trach because I didn't want to upset him, but I wish that I had to see if he was actually trying to make some sounds. I got Aidan loaded in the car just in time for a storm to just dump on us. It was an interesting hour drive home.
Yesterday (Monday) was Aidan SPECT scan and Russell's first day on the job. I had to take Russell to work and then get Aidan to the hospital and get him checked in. We were about 30 minutes late because of traffic. They got him settled in and got him under anesthesia and after about an hour the nuclear med tech came out to get me. I thought they might be done already, but she apparently neeeded me to "wake Aidan up." I got worried because she said they had brought him back out of the anesthesia and needed him to open his eyes before she could inject a contrast. So I spent 30 minutes trying to get him to open his eyes. Finally, he opened his eyes and I was able to go back out and let them finish. They ended up having to scan him again because they needed to get better images. So instead of him being back there for about an hour and a half he was back there for about 4 hours total. We finally got to leave around 1:40 yesterday afternoon.
Today was the ENT consult to get the PMV. That was a complete waste of time. The pulmonologist's office made the appointment for us. And being that they aren't familiar with doctors affiliated with NorthEast, they sent us to a regular ENT, not one that specializes in pediatrics. I asked them when they called to tell me about the appointment if they were sure this is where they wanted me to go. I thought they were going to make the appointment with Dr. D who is a pretty well known pediatric ENT who was actually supposed to do Aidan's tracheostomy, but couldn't coordinate his schedule with the other surgeon's. Anyway, the ENT we saw today wrote me a prescription for the PMV's but is referring us over to Dr. D to manange Aidan's trach and PMV schedule.
After that, I went to meet with the nutritionist and the surgeon. The surgeon wasn't able to talk with me then (he's supposed to call later). The nutritionist and I discussed 2 options to dealing with Aidan's feedings. 1: we feed him 4 times a day with a pump at night to make up the feedings or 2: we feed him 6 times a day and add something to his formula that gives it more calories with less volume, it's called Benecalorie. I'm trying it in the rest of his feedings today to see how he tolerates it, otherwise we're looking at the pump overnight.
So that's your update for the past week while I was being slack.
I'd like to mention a new fundraiser going on. It's a raffle for a birdfeeder and a birdhouse. These are one of a kind, pottery donated to us by Betty Owen. Betty is one of our nurses step-mother. She really is an artist and the bird house and feeder are really pretty. We're selling the tickets for $1 each or 6 for $5. There will be a drawing for each item so you will have two chances to win. If anyone is interested in buying tickets just email me and I'll get the information to you. I will post pictures in another posting so you can see them.
Thanks everyone for your prayers and support!
Erin
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