We just walked in the door, but I wanted to make a quick post to let everyone know that Aidan is doing really well. I will post a few pictures later today or tomorrow. I took some before they took him back to the OR on Thursday morning (the last pictures with a trach) and I'm going to get some of him today without the trach.
I'm so glad to see my baby without a tube sticking out of his neck. When the stoma heals, I'm hoping that we can all go and have a family picture made. We never got to get Aidan's 2nd birthday pictures made.
Thank you again everyone for your constant prayers and endless support. I know that I couldn't have made it this far without them. I have hope that Aidan is going to recover from this. I know it's possible for children to recover from similar accidents... we met a little boy right after Aidan's accident who nearly drowned 2 or 3 years ago and you'd never know that he went home blind and unable to walk or talk. He was "normal" running around playing with his brothers and sisters.
I have hope that Aidan and Evan are going to be playing together one day, and this whole experience will just be a distant nightmare. We'll never understand why this happened, we can only learn from it and love Aidan no matter what his condition.
I'll post the pictures later and keep you all updated. Hope everyone has a great weekend!
~Erin
Saturday, August 30, 2008
Surprise!
Sorry everyone ... we have been busy today with things so we completely forgot to post.
I got up this morning and, after a bit of insistence from Erin, I went to check on Aidan. We fully expected the trach to be removed around noon, so imagine my surprise when the trach was nowhere to be found! I found out that after Dr. D looked at the charts, he decided to pull the trach just before 8 this morning.
Aidan has now been breathing completely on his own for 36 hours. Provided there are no problems tonight, we will be home sometime tomorrow. They said we'd be discharged at 8AM, which means we'll finally be out of here sometime around 2PM. ;)
Thanks to everyone for their prayers and well-wishes. This was a huge hurdle for us to clear. Next step is to get him swallowing consistently, right after he gets his big boy bed.
-- Russell
I got up this morning and, after a bit of insistence from Erin, I went to check on Aidan. We fully expected the trach to be removed around noon, so imagine my surprise when the trach was nowhere to be found! I found out that after Dr. D looked at the charts, he decided to pull the trach just before 8 this morning.
Aidan has now been breathing completely on his own for 36 hours. Provided there are no problems tonight, we will be home sometime tomorrow. They said we'd be discharged at 8AM, which means we'll finally be out of here sometime around 2PM. ;)
Thanks to everyone for their prayers and well-wishes. This was a huge hurdle for us to clear. Next step is to get him swallowing consistently, right after he gets his big boy bed.
-- Russell
Thursday, August 28, 2008
A prayer for Aidan
I'm asking that everyone who reads this and is a believer to pray that Aidan is successful with having his trach capped for 24 hours. He needs to be able to maintain his oxygen level above 90% and not being in respiratory distress and he needs to cough to clear his airway should he need to.
The bronch went well. The doctor said that it looked like Aidan also had a chest cold along with the sinus infection/head cold. Since he was treated with an antibiotic and just recently came off of that, he was a little concerned because it might make it harder for Aidan to "fly" as they call it.
A smaller trach was put in and at noon we capped him. At first he was doing really well, but then he got kind of junky sounding and we've been trying to get him to cough to clear his throat. I think he just needs the trach tube cleared out and not actually suctioned deep. Anything in the trach sounds amplified, and it gets annoying. You want to cough for him to clear it.
If this is not successful and he fails at this attempt to decannulize, we'll have to wait until the spring. Because of the cold/flu/RSV season, they don't usually try to decannulize trach patients. For Aidan's sake, I hope this is successful. The trach, however useful it can be in an emergency situation, is a constant irritation and reminder of Aidan's accident.
Everywhere we go, people stare at him because of the trach. Without that, you couldn't look at him and tell there is really anything wrong with him. He looks normal.
If it's not meant to be now, then it's not, but I'm praying that it's time. I'm praying that Aidan is well enough and strong enough to breathe on his own without the trach, and that he will start swallowing and maintaining his secretions much better.
If Aidan does well the rest of the time, then they will take the trach out and cover it the hole with a dressing and we'll be here another night or so for observation. In this case, staying in the hospital for a few extra nights is a good thing.
Thank you everyone!
~Erin
The bronch went well. The doctor said that it looked like Aidan also had a chest cold along with the sinus infection/head cold. Since he was treated with an antibiotic and just recently came off of that, he was a little concerned because it might make it harder for Aidan to "fly" as they call it.
A smaller trach was put in and at noon we capped him. At first he was doing really well, but then he got kind of junky sounding and we've been trying to get him to cough to clear his throat. I think he just needs the trach tube cleared out and not actually suctioned deep. Anything in the trach sounds amplified, and it gets annoying. You want to cough for him to clear it.
If this is not successful and he fails at this attempt to decannulize, we'll have to wait until the spring. Because of the cold/flu/RSV season, they don't usually try to decannulize trach patients. For Aidan's sake, I hope this is successful. The trach, however useful it can be in an emergency situation, is a constant irritation and reminder of Aidan's accident.
Everywhere we go, people stare at him because of the trach. Without that, you couldn't look at him and tell there is really anything wrong with him. He looks normal.
If it's not meant to be now, then it's not, but I'm praying that it's time. I'm praying that Aidan is well enough and strong enough to breathe on his own without the trach, and that he will start swallowing and maintaining his secretions much better.
If Aidan does well the rest of the time, then they will take the trach out and cover it the hole with a dressing and we'll be here another night or so for observation. In this case, staying in the hospital for a few extra nights is a good thing.
Thank you everyone!
~Erin
Monday, August 25, 2008
Wow, I've been really lax about posting...
Sorry everyone! I didn't realize it had been a week since I posted. Time just flies by. Aidan is doing well. His bronchoscopy is scheduled for Thursday morning. Basically the doctor will pass a small camera down through Aidan's nose and down into his trachea and then past the trach tube. He is looking for any type of obstruction or scar tissue from the trach, anything that might make it difficult for Aidan to breathe without the trach. If everything is okay and he feels like Aidan is ready, the doctor will put in a smaller size trach and cap it off. He'll then stay in ICU overnight for observation and if he tolerates being capped during that time, they can remove the trach the next morning.
We are hoping and praying that we don't have any set-backs with this. Aidan has had some sinus issues over the last couple weeks that has made it difficult to cap the trach. He's tolerating the PMV well since it allows him to breathe in through the trach. His nose has been really stuffy and he's had a bit of sinus drainage. We've just been trying to get it cleared up.
The infection that he had around his g-tube and trach is gone. The trach area is still red, but that is from the constant irritation. Once the trach comes out, it will make things a lot better.
Aidan has been gaining quite a bit of weight. His little cheeks have puffed up and the new clothes that I just bought him a few weeks ago are already snug. I can't believe how big he's gotten. He's definitely gotten longer which is good, but we're going to have to adjust his calorie intake.
Aside from all that has been going on with little man, the rest of us are doing well. Russell is still working at Ingersoll Rand. It's just a contract job at this point, but we're hoping that something more permanent comes out of it. He seems to really like it there.
Evan is growing like a little weed too. He's been cutting his 1 year old molars and he's finally started walking although he's really wobbly because he still prefers to crawl everywhere. Evan has started giving Aidan kisses. It's so cute. He'll go up to Aidan when he's sitting in his chair on the floor and he'll pat him on the head or shoulder and then he'll lean over to give Aidan kisses. I haven't been able to catch him doing it when I have the camera nearby or I'd have a picture to show you all. It really just melts my heart.
As for me, I'm doing okay. According to the CT scan that I had, I don't have a hernia, even though my doctor felt one. I still have pain in my tummy, but it comes and goes, so we'll have to wait and see. I've been crocheting. I'm determined to finish several projects I have planned for Christmas gifts. I just finished an afghan last night and I just started another one tonight. I have 5 or 6 more to make before Christmas.
I hope that all of our readers are doing well. Thank you for your prayers and support. I will post Thursday after Aidan's bronch to update you all.
~Erin
We are hoping and praying that we don't have any set-backs with this. Aidan has had some sinus issues over the last couple weeks that has made it difficult to cap the trach. He's tolerating the PMV well since it allows him to breathe in through the trach. His nose has been really stuffy and he's had a bit of sinus drainage. We've just been trying to get it cleared up.
The infection that he had around his g-tube and trach is gone. The trach area is still red, but that is from the constant irritation. Once the trach comes out, it will make things a lot better.
Aidan has been gaining quite a bit of weight. His little cheeks have puffed up and the new clothes that I just bought him a few weeks ago are already snug. I can't believe how big he's gotten. He's definitely gotten longer which is good, but we're going to have to adjust his calorie intake.
Aside from all that has been going on with little man, the rest of us are doing well. Russell is still working at Ingersoll Rand. It's just a contract job at this point, but we're hoping that something more permanent comes out of it. He seems to really like it there.
Evan is growing like a little weed too. He's been cutting his 1 year old molars and he's finally started walking although he's really wobbly because he still prefers to crawl everywhere. Evan has started giving Aidan kisses. It's so cute. He'll go up to Aidan when he's sitting in his chair on the floor and he'll pat him on the head or shoulder and then he'll lean over to give Aidan kisses. I haven't been able to catch him doing it when I have the camera nearby or I'd have a picture to show you all. It really just melts my heart.
As for me, I'm doing okay. According to the CT scan that I had, I don't have a hernia, even though my doctor felt one. I still have pain in my tummy, but it comes and goes, so we'll have to wait and see. I've been crocheting. I'm determined to finish several projects I have planned for Christmas gifts. I just finished an afghan last night and I just started another one tonight. I have 5 or 6 more to make before Christmas.
I hope that all of our readers are doing well. Thank you for your prayers and support. I will post Thursday after Aidan's bronch to update you all.
~Erin
Sunday, August 17, 2008
No, I haven't dropped off the face of the planet....
Sorry for not posting this week, everyone. Aidan is doing pretty good. The infection he had around his g-tube and trach is clearing up now that we've gotten him on a different medicine for it. It looks 1000 times better than it did at the beginning of the week.
Aidan is still doing hyperbaric treatments and will continue through the rest of the year with them with a few 2-3 week breaks between each 40 session block. So far he's done almost 30 treatments and they've increased the pressure from 1.5-1.75 atmospheres and will go up again next week sometime to 2.0 atmospheres. The increased pressure is supposed to be more beneficial and help stimulate Aidan's body to produce more stem cells. I actually noticed a difference after the first treatment at the increased pressure.
He has been moving his arms and legs more. It's a very small movement, but he's doing it voluntarily. He's been smiling, well, grinning- more and more and he actually responded to his Nana tickling him the other night. He kind of drew in his tummy and moved his foot when she tickled him. So far we've not gotten a reaction out of him when we would do that. Sometimes he'll move his foot when you tickle it, but not anywhere else. Aidan used to be really ticklish too.
There are little tiny improvements. Other people that don't see him every day see more changes in him than I do. I am just constantly reminded how blessed we are to have him here in our lives. He is a miracle. I keep hearing about more and more children drowning and my heart just aches for those families, and it aches for what we've endured and for what we lost, even though Aidan is still here, we lost a big part of him. As close as we came to going through it ourselves, I still can't fathom the pain of having a child die.
Because Aidan has grown so much he's starting to dwarf his crib. Russell and I went yesterday to look for a "big boy" bed for him. I want to get a captain's bed (the ones with the drawers underneath) for him because they are typically higher than a regular bed. We found one and a pretty good mattress for him, so we'll probably be getting it in the next week or so.
As far as therapy equipment goes, we've gotten pretty much all of the big stuff. His stander and bath seat arrived. He has a hammock swing and his "tomato" chair. The only things he needs now are wedges and things like that so we can get him on his tummy more. I'm praying that we'll need a crawler or walker in the near (year or so) future.
We have less than 2 weeks left before the trach is to come out. I'm getting more and more nervous about it, but I am so excited to see Aidan without the trach.
Thank you everyone for the continued support and prayers. I apologize for not posting the video of the raffle drawing. The video did not turn out well. The audio and video were really off and I couldn't fix it. Again, we thank everyone who purchased tickets.
I'll leave you all with a couple pictures of Aidan. He looked so cute in his little seersucker sun suit. :)
Aidan is still doing hyperbaric treatments and will continue through the rest of the year with them with a few 2-3 week breaks between each 40 session block. So far he's done almost 30 treatments and they've increased the pressure from 1.5-1.75 atmospheres and will go up again next week sometime to 2.0 atmospheres. The increased pressure is supposed to be more beneficial and help stimulate Aidan's body to produce more stem cells. I actually noticed a difference after the first treatment at the increased pressure.
He has been moving his arms and legs more. It's a very small movement, but he's doing it voluntarily. He's been smiling, well, grinning- more and more and he actually responded to his Nana tickling him the other night. He kind of drew in his tummy and moved his foot when she tickled him. So far we've not gotten a reaction out of him when we would do that. Sometimes he'll move his foot when you tickle it, but not anywhere else. Aidan used to be really ticklish too.
There are little tiny improvements. Other people that don't see him every day see more changes in him than I do. I am just constantly reminded how blessed we are to have him here in our lives. He is a miracle. I keep hearing about more and more children drowning and my heart just aches for those families, and it aches for what we've endured and for what we lost, even though Aidan is still here, we lost a big part of him. As close as we came to going through it ourselves, I still can't fathom the pain of having a child die.
Because Aidan has grown so much he's starting to dwarf his crib. Russell and I went yesterday to look for a "big boy" bed for him. I want to get a captain's bed (the ones with the drawers underneath) for him because they are typically higher than a regular bed. We found one and a pretty good mattress for him, so we'll probably be getting it in the next week or so.
As far as therapy equipment goes, we've gotten pretty much all of the big stuff. His stander and bath seat arrived. He has a hammock swing and his "tomato" chair. The only things he needs now are wedges and things like that so we can get him on his tummy more. I'm praying that we'll need a crawler or walker in the near (year or so) future.
We have less than 2 weeks left before the trach is to come out. I'm getting more and more nervous about it, but I am so excited to see Aidan without the trach.
Thank you everyone for the continued support and prayers. I apologize for not posting the video of the raffle drawing. The video did not turn out well. The audio and video were really off and I couldn't fix it. Again, we thank everyone who purchased tickets.
I'll leave you all with a couple pictures of Aidan. He looked so cute in his little seersucker sun suit. :)
Saturday, August 9, 2008
golf tournament and raffle results
Thank you to everyone who came out and participated in and helped with the golf tournament. We didn't have the turn out we had been hoping for, but I think everyone had a good time. We will very likely do this again next year; Russell spoke with one of the people from SEU Promotions about how they could help and it sounds like they can do a lot for us. I think he is planning to meet with them in a few weeks to discuss things further.
I'd also like to thank everyone who purchased raffle tickets for the bird feeder and bird house. And a huge thanks goes out to Brian and Betty Owen who donated the feeder and house.
Congratulations to Ray Russ who won the bird feeder and D. Tyler who won the bird house. We did the drawing earlier tonight, and just so it would be fair, we have taken a short video of the drawing which we'll post to the blog soon.
Here are just a few of the pictures that were taken today. We will have more available online in a day or two.
Doesn't our little man look so BIG!? He's grown so much in the past few months. I've had to buy him all new clothes because he's outgrown everything I bought him back in the spring. He jumped from 24 months to 3T overnight it seems. Thanks for the continued prayers and support.
I'd also like to thank everyone who purchased raffle tickets for the bird feeder and bird house. And a huge thanks goes out to Brian and Betty Owen who donated the feeder and house.
Congratulations to Ray Russ who won the bird feeder and D. Tyler who won the bird house. We did the drawing earlier tonight, and just so it would be fair, we have taken a short video of the drawing which we'll post to the blog soon.
Here are just a few of the pictures that were taken today. We will have more available online in a day or two.
Doesn't our little man look so BIG!? He's grown so much in the past few months. I've had to buy him all new clothes because he's outgrown everything I bought him back in the spring. He jumped from 24 months to 3T overnight it seems. Thanks for the continued prayers and support.
Wednesday, August 6, 2008
EEG update
I don't have much to tell, but Aidan did well at the hospital. The neurologist was pleased with what she was able to review this morning on the computer. Aidan has a lot more brain activity than he previously had, although it is still a little slower than normal. He is having some seizure activity, but she didn't really talk about that much. She and the other neurologist will review the whole EEG and analyze it. They also drew a little blood to test his Keppra (seizure med) levels to decide if his dosage needs to be changed.
We have a follow-up appointment with the neurologist on the 26th of this month. The bronchoscopy and decanulization (if everything goes well) are still scheduled for the 28th. I'm so ready for Aidan to not have a trach. It will be nice to see him look normal without the constant reminder that something is wrong when you look at him.
A couple of Aidan's nurses from the PICU came over to visit him earlier today and then they also ended up doing the blood draw before we left too. He's not an easy stick. It took 2 tries to get a tiny vial for the Keppra test.
Well, that's all I know for now. We're still working on getting the yeast infections around his g-tube and trach cleared up. He got those from being on the antibiotic for his ear infection.
Aidan's stander and bath seat are being delivered tomorrow morning (FINALLY!) and we will resume hyperbaric treatments tomorrow evening. The golf tournament is on Saturday. I just wish it was all over at this point.
I didn't sleep well at the hospital, so I'm exhausted. I'll update more later. Thanks for the continued prayers and support!
~Erin
We have a follow-up appointment with the neurologist on the 26th of this month. The bronchoscopy and decanulization (if everything goes well) are still scheduled for the 28th. I'm so ready for Aidan to not have a trach. It will be nice to see him look normal without the constant reminder that something is wrong when you look at him.
A couple of Aidan's nurses from the PICU came over to visit him earlier today and then they also ended up doing the blood draw before we left too. He's not an easy stick. It took 2 tries to get a tiny vial for the Keppra test.
Well, that's all I know for now. We're still working on getting the yeast infections around his g-tube and trach cleared up. He got those from being on the antibiotic for his ear infection.
Aidan's stander and bath seat are being delivered tomorrow morning (FINALLY!) and we will resume hyperbaric treatments tomorrow evening. The golf tournament is on Saturday. I just wish it was all over at this point.
I didn't sleep well at the hospital, so I'm exhausted. I'll update more later. Thanks for the continued prayers and support!
~Erin
Monday, August 4, 2008
Okay, I figured it was time to update before the followers get restless. So, there isn't much to tell. Aidan did okay this weekend. His trach and g-tube have developed some type of infection or rash, so I had to call the doctor this morning to get him some new medicine to treat it. Hopefully this will take care of it. He's been much more upset today and last night.
We finally took Aidan to my step-dad's yesterday. Russ and I have been there several times, and I have taken Evan, but yesterday was the first day that we have taken Aidan since the accident. It wasn't as hard as I thought it might be. I figured we'd have to face it at some point. We had dinner there and took Aidan's little seat and strapped it to the porch swing so he could swing. He seemed to like that.
Tomorrow is his 24 hour EEG. We go in to the hospital at 7:15 in the morning. Oh, I forgot to change the date on Aidan's bronch and trach removal. It's been moved to the 28th instead of the 20th. Hopefully that will give us some time to get these infections or rashes cleared up. I'm sure he'll feel so much better once he has that thing out. I know for me personally, it would drive me nuts to have something like that in my neck and I couldn't do anything about it.
Anyway, not much else going on. I'll post more later! :)
We finally took Aidan to my step-dad's yesterday. Russ and I have been there several times, and I have taken Evan, but yesterday was the first day that we have taken Aidan since the accident. It wasn't as hard as I thought it might be. I figured we'd have to face it at some point. We had dinner there and took Aidan's little seat and strapped it to the porch swing so he could swing. He seemed to like that.
Tomorrow is his 24 hour EEG. We go in to the hospital at 7:15 in the morning. Oh, I forgot to change the date on Aidan's bronch and trach removal. It's been moved to the 28th instead of the 20th. Hopefully that will give us some time to get these infections or rashes cleared up. I'm sure he'll feel so much better once he has that thing out. I know for me personally, it would drive me nuts to have something like that in my neck and I couldn't do anything about it.
Anyway, not much else going on. I'll post more later! :)
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