- Thread Starter Thread Starter
- #161
http://www.youtube.com/watch?v=X2lX6....blogspot.com/ this is the video link if anyone missed it before
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prayers and vibes for my exbf and son
- Thread starter blondrebel76
- Start Date
That video is so sweet! What a handsome little guy! He has stayed in my prayers still. Thank you for updating us on him so regularly!
I hope these hyperbaric treatments do him good!
Much love to Aidan...
I bawled my eyes out during that video!! Im praying for him!! He is a beautiful little boy, and lets just hope he recovers nicely!!
- Thread Starter Thread Starter
- #165
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." ~Jeremiah 29:11
Tuesday, April 15, 2008
Evening Update on Aidan and HBOT Redux
Aidan had a pretty good day today. He went through his usual rounds of Occupational, Speech, and Physical Therapies. He was also finally fitted for his AFOs and will presumably have them by tomorrow.
I had a visit this morning from the home health nursing group. They brought in the portable suction and pulse-ox meter we will be using when transporting Aidan and taking care of him at home. They'll visit the house tomorrow to bring in and setup some of the more "permanent" equipment (oxygen tanks, supplies, etc.).
As stated numerous times previously, we are starting Aidan on Hyperbaric Oxygen Therapy (HBOT) on Thursday with his first visit as soon as he is discharged from the hospital. Our therapist already gave us 10 free sessions, which is equal to one week of therapy, but we wanted to get more sessions lined up before Aidan was discharged. You know, one less thing to worry about.
Erin has been in contact with HUGS for Near-Drowning Children since we got to Levine in an effort to get assistance in paying for some HBOT treatments. After relaying various pieces of information to them, Erin received word that they will pay for a month of treatment (40 in all)! Erin also informed me that efforts are currently in place to pay for another 30 treatments. This means 2 months of treatments taken care of already!
Like Erin said, in two days we start yet another new chapter in our journey with Aidan. Honestly, I don't know what to expect or hope for at this point. All I know is there will be a lot of adjusting going on for the first few weeks when you consider the nurses and therapists coming in and out, doctor's visits (I know we have 2-3 already lined up in the first week), and the simple process of getting into a routine at home. I am pretty sure Erin and I will be asking for advice from some of our new friends in the near-drowning (ND) community on how to make this transition as smooth as possible.
To those of you offering to help, we greatly appreciate any and all assistance you can provide. Continued prayers are welcomed and encouraged.
-- Russell
Tuesday, April 15, 2008
Evening Update on Aidan and HBOT Redux
Aidan had a pretty good day today. He went through his usual rounds of Occupational, Speech, and Physical Therapies. He was also finally fitted for his AFOs and will presumably have them by tomorrow.
I had a visit this morning from the home health nursing group. They brought in the portable suction and pulse-ox meter we will be using when transporting Aidan and taking care of him at home. They'll visit the house tomorrow to bring in and setup some of the more "permanent" equipment (oxygen tanks, supplies, etc.).
As stated numerous times previously, we are starting Aidan on Hyperbaric Oxygen Therapy (HBOT) on Thursday with his first visit as soon as he is discharged from the hospital. Our therapist already gave us 10 free sessions, which is equal to one week of therapy, but we wanted to get more sessions lined up before Aidan was discharged. You know, one less thing to worry about.
Erin has been in contact with HUGS for Near-Drowning Children since we got to Levine in an effort to get assistance in paying for some HBOT treatments. After relaying various pieces of information to them, Erin received word that they will pay for a month of treatment (40 in all)! Erin also informed me that efforts are currently in place to pay for another 30 treatments. This means 2 months of treatments taken care of already!
Like Erin said, in two days we start yet another new chapter in our journey with Aidan. Honestly, I don't know what to expect or hope for at this point. All I know is there will be a lot of adjusting going on for the first few weeks when you consider the nurses and therapists coming in and out, doctor's visits (I know we have 2-3 already lined up in the first week), and the simple process of getting into a routine at home. I am pretty sure Erin and I will be asking for advice from some of our new friends in the near-drowning (ND) community on how to make this transition as smooth as possible.
To those of you offering to help, we greatly appreciate any and all assistance you can provide. Continued prayers are welcomed and encouraged.
-- Russell
- Thread Starter Thread Starter
- #166
Thursday, April 17, 2008
AIDAN IS HOME!!!
Aidan is finally home after 2 months and a day of being in a hospital. We were supposed to be discharged from Levine around 10am but we didn't actually leave there until right at 1pm. We got our new car seat for Aidan and had to get it installed in the van, and we had to get all of his meds from the pharmacy.
We went straight to his first hyperbaric treatment. It went pretty well, and if he hadn't soaked his diaper and his clothes toward the end of the session he would have handled it really well. Aidan seemed to handle the pressure on his ears really well. So we're scheduled to do 2 sessions tomorrow, 1 on Saturday, 2 Sunday, Monday and Tuesday.
They are trying to figure out a way to get us a portable chamber at home, using the funds from HUGS and the other additional treatments we have lined up. That would definitely help with the travel time involved in doing these treatments. It's 45 minutes to and from the location. I'm sure that we'll have to raise some additional funds to facilitate getting our own chamber, but it would be well worth it.
The doctor said something that really made me feel very good today. She said that Aidan has shown a "non-traditional" response to his type of injury; meaning that he is doing much better than other patients she's seen with similar conditions. She said that she hopes and she really thinks that he'll continue to progress in this "non-traditional" way. It gives me hope to hear something like that come out of a doctor's mouth. Aidan has proven what a fighter he is. He overcame the odds that were against him and he survived near-drowning. Despite the brain injury, he is still fighting and I know that he will continue to do so. He's a tough, stubborn, little boy.
I wasn't going to drag this out because I'm exhausted, but I just want to thank everyone for their prayers.... the endless prayers, love and support for our family. I know that we wouldn't be where we are now without the power of prayer. God has truly worked some miracles through our little boy, and will continue to do so. We are so blessed to have so many people who love and care for us. Our journey is just beginning, so we hope that Aidan will continue to be in your hearts and prayers. Thank you, everyone!
love,
Erin
AIDAN IS HOME!!!
Aidan is finally home after 2 months and a day of being in a hospital. We were supposed to be discharged from Levine around 10am but we didn't actually leave there until right at 1pm. We got our new car seat for Aidan and had to get it installed in the van, and we had to get all of his meds from the pharmacy.
We went straight to his first hyperbaric treatment. It went pretty well, and if he hadn't soaked his diaper and his clothes toward the end of the session he would have handled it really well. Aidan seemed to handle the pressure on his ears really well. So we're scheduled to do 2 sessions tomorrow, 1 on Saturday, 2 Sunday, Monday and Tuesday.
They are trying to figure out a way to get us a portable chamber at home, using the funds from HUGS and the other additional treatments we have lined up. That would definitely help with the travel time involved in doing these treatments. It's 45 minutes to and from the location. I'm sure that we'll have to raise some additional funds to facilitate getting our own chamber, but it would be well worth it.
The doctor said something that really made me feel very good today. She said that Aidan has shown a "non-traditional" response to his type of injury; meaning that he is doing much better than other patients she's seen with similar conditions. She said that she hopes and she really thinks that he'll continue to progress in this "non-traditional" way. It gives me hope to hear something like that come out of a doctor's mouth. Aidan has proven what a fighter he is. He overcame the odds that were against him and he survived near-drowning. Despite the brain injury, he is still fighting and I know that he will continue to do so. He's a tough, stubborn, little boy.
I wasn't going to drag this out because I'm exhausted, but I just want to thank everyone for their prayers.... the endless prayers, love and support for our family. I know that we wouldn't be where we are now without the power of prayer. God has truly worked some miracles through our little boy, and will continue to do so. We are so blessed to have so many people who love and care for us. Our journey is just beginning, so we hope that Aidan will continue to be in your hearts and prayers. Thank you, everyone!
love,
Erin
- Thread Starter Thread Starter
- #167
Sunday, April 20, 2008
A minor setback
Since Aidan came home Thursday, he has been throwing up at least a couple of times a day. When he throws up, it there is a lot of mucous in it. He also was running a low-grade fever. Erin called Dr. Pons and she said to take Aidan to the emergency room. She is there now with him.
She just called me a moment ago and this is what I know:
Aidan is not in the PICU ... he is in a regular room back at Jeff Gordon Children's Hospital and being held for observation. He does not have pneumonia according to x-rays taken this evening. They will run x-rays again to make sure. His white blood cell count is up, but this could most likely be due to the trach tube. The doctor asked Erin to give Aidan 5-10 mL of formula every 10 minutes or so to see if he tolerates it. She told me that he was tolerating it pretty well, but was about to go to bed. Feeding will continue tomorrow.
At this point, Aidan is set to be back home tomorrow, but it all depends on the next set of x-rays. This is a minor setback, as it puts a damper on HBOT and we may have to reschedule he appointment on Wednesday, but we should be back in the swing of things soon.
A minor setback
Since Aidan came home Thursday, he has been throwing up at least a couple of times a day. When he throws up, it there is a lot of mucous in it. He also was running a low-grade fever. Erin called Dr. Pons and she said to take Aidan to the emergency room. She is there now with him.
She just called me a moment ago and this is what I know:
Aidan is not in the PICU ... he is in a regular room back at Jeff Gordon Children's Hospital and being held for observation. He does not have pneumonia according to x-rays taken this evening. They will run x-rays again to make sure. His white blood cell count is up, but this could most likely be due to the trach tube. The doctor asked Erin to give Aidan 5-10 mL of formula every 10 minutes or so to see if he tolerates it. She told me that he was tolerating it pretty well, but was about to go to bed. Feeding will continue tomorrow.
At this point, Aidan is set to be back home tomorrow, but it all depends on the next set of x-rays. This is a minor setback, as it puts a damper on HBOT and we may have to reschedule he appointment on Wednesday, but we should be back in the swing of things soon.
Sending prayers out to Aidan I hope that this minor setback is soon solved - poor baby, having to deal with vomiting
He really is such a trooper and bless you all for doing so much in helping him heal and grow and have a chance at a brighter future
- Thread Starter Thread Starter
- #169
Monday, April 21, 2008
link to additional pictures from newspaper article
http://salisburypost.mycapture.com/m...ategoryID=7199
This is the link to the page where you can find more pictures the photographer took during the newspaper interview.
Thanks everyone!
Minor setback not so minor
It turns out that the minor setback from yesterday was not so minor after all. Erin called this morning and informed me that due to the constant secretions and attention required to take care of them, they decided to move Aidan back to the PICU. In a strange twist of irony, he is in the same room he was in when he was admitted to after the accident.
At this time, they are doing chest x-rays to see if he actually has pneumonia (previous x-rays were to see if he aspirated and, if so, did that cause pneumonia) and blood cultures to see what is causing the high white blood cell count. They also have him hooked up to an IV for fluids.
When Erin came in to pick up some things so she can stay at the hospital, she informed me that Aidan weighed 28 pounds. This is low, but not low enough to be of concern; however, he has definitely lost a lot of weight ... quite a bit in the last day or so due to the vomiting.
Erin was told by Dr. Cacerras that we should not expect Aidan to be discharged today or tomorrow. Dr. Black comes in tomorrow, so we will have another assessment done soon. Once they rehydrate him and find out where the infection is coming from so they can start the antibiotics, he should be able to keep his formula down and we'll be able to come home.
link to additional pictures from newspaper article
http://salisburypost.mycapture.com/m...ategoryID=7199
This is the link to the page where you can find more pictures the photographer took during the newspaper interview.
Thanks everyone!
Minor setback not so minor
It turns out that the minor setback from yesterday was not so minor after all. Erin called this morning and informed me that due to the constant secretions and attention required to take care of them, they decided to move Aidan back to the PICU. In a strange twist of irony, he is in the same room he was in when he was admitted to after the accident.
At this time, they are doing chest x-rays to see if he actually has pneumonia (previous x-rays were to see if he aspirated and, if so, did that cause pneumonia) and blood cultures to see what is causing the high white blood cell count. They also have him hooked up to an IV for fluids.
When Erin came in to pick up some things so she can stay at the hospital, she informed me that Aidan weighed 28 pounds. This is low, but not low enough to be of concern; however, he has definitely lost a lot of weight ... quite a bit in the last day or so due to the vomiting.
Erin was told by Dr. Cacerras that we should not expect Aidan to be discharged today or tomorrow. Dr. Black comes in tomorrow, so we will have another assessment done soon. Once they rehydrate him and find out where the infection is coming from so they can start the antibiotics, he should be able to keep his formula down and we'll be able to come home.
- Thread Starter Thread Starter
- #171
I am pretty sure they said he has brain activity, But they did find out that part of his brain is dead but they have never came to a definate answer if he will be immoble the rest of his life. I think they are just waiting and working with him, trying everything possible.
- Thread Starter Thread Starter
- #172
Tuesday, April 22, 2008
Aidan is on his way back home
I just called Erin and she told me Aidan will be discharged at about 1:30 this afternoon and should be home by about 3:30 (we all know how long it takes to discharge someone from the hospital!). We'll get back into the swing of this with HBOT and everything else tomorrow. Aidan has an appointment tomorrow morning with his primary care physician (Dr. Pons), so myself or Erin will most likely post another update tomorrow after that.
Aidan is on his way back home
I just called Erin and she told me Aidan will be discharged at about 1:30 this afternoon and should be home by about 3:30 (we all know how long it takes to discharge someone from the hospital!). We'll get back into the swing of this with HBOT and everything else tomorrow. Aidan has an appointment tomorrow morning with his primary care physician (Dr. Pons), so myself or Erin will most likely post another update tomorrow after that.
Im still praying and sending continued
I really hope he recovers some mobility! It would stink to be locked in a body that didn't work!!
for all!!
I really hope he recovers some mobility! It would stink to be locked in a body that didn't work!!
Same here. SendingOriginally Posted by glitch
Im still praying and sending continued
I really hope he recovers some mobility! It would stink to be locked in a body that didn't work!!for all!!
- Thread Starter Thread Starter
- #175
Wednesday, April 23, 2008
we're home.... again
I got Aidan home yesterday afternoon around 3pm. Dr. Black diagnosed him with tracheitis and constipation. Basically, Aidan has an infection around his trach site and it's been causing the increased secretions, combined with seasonal allergies, the extra mucous is collecting in his tummy and making him sick. He's been put on Augmentin for that.
Now with the constipation. We've been having problems with that since he was put on the formula, but a lot of the meds he is on add to the problem. We've got him on colace for that.
I took Aidan to his primary doctor this morning, and she gave me a script for Zyrtec, for the allergies and Zantac for the reflux problem because he is still spiting up or vomiting occasionally after eating.
His feedings have also changed and we've now dropped to only 5 feedings a day but we went up on the volume to work in dropped feeding and we're supposed to increase the volume gradually over the next week or so. The doctors and nutritionists think that Aidan needs more calories, so we'll see how he does on their schedule, but I don't want him to gain back up to almost 50 pounds either.
I'd like to get away from using the formula as the bulk of his diet anyway. That stuff is NASTY! There isn't any reason why I can't blend up his foods or make my own "formula" that has real food and vitamins in it that work for him and his needs. I'm still hoping that one day Aidan will be able to eat normal foods by mouth and not through a tube in his belly, although, I'm okay with the tube for as long as he needs it.
The trach is another story altogether. Aidan is able to breathe on his own when the trach is capped. He is able to swallow, and he coughs... really well. I'd really like to see the trach removed by the end of the summer. I'm asking you all to pray that Aidan continues to do well and is able to be decannulized by then too. I think it is just a source of irritation to him, both in terms of his health and his overall mood.
The hyperbarics resumed today. Aidan did really well, as he has been doing since we started. I went in with him today and he fell asleep while I watched a movie and kept an eye on him. I am so appreciative of everything that Dr. Rebecca is doing for us and for Aidan. For us to be able to do 2 sessions a day, we have to drive almost 3 hours a day to and from her location, so she has been working to help us raise the funds so that we can get our own hyperbaric chamber at home. I was absolutely floored by the cost of one of these units as it seems like just like everything else Aidan needs it's extremely expensive. We could buy a brand new vehicle or put a down payment on a house for what one of these things costs.
Other things that are going on right now--Russell's mom and brother are on their way here to visit as we speak, and should arrive sometime tomorrow evening. Our van has been acting goofy. It's a 2005 but it's got a lot of miles on it and today I felt what I think is the transmission starting to slip. The blower to the a/c fan in the front went out last summer and then the locks stopped working. We've been able to deal with that, but I'm just praying that the tranny doesn't crater on us. That would really be bad since it is our only vehicle. We're going to have to find another vehicle once Russell finds a job (which I hope is soon.) And finally, I'm looking at taking an online course in medical transcription so that I can work from home. Anything right now to help bring in more income will help, but I have to come up with the $1800 to pay for the course. I don't want to take out any loans right now (and I don't think I could even if I wanted to.) Anyway- we shall see how things go. Right now the most important thing is taking care of the boys.
Please pray that Russell finds a job soon, that we are able to raise the remaining funds for the hyperbaric chamber, that Aidan's trach will be able to be removed in the near future and that he continues to progress. Thanks to everyone for your love and support and the many, many prayers. We are so grateful to you all!
~Erin
we're home.... again
I got Aidan home yesterday afternoon around 3pm. Dr. Black diagnosed him with tracheitis and constipation. Basically, Aidan has an infection around his trach site and it's been causing the increased secretions, combined with seasonal allergies, the extra mucous is collecting in his tummy and making him sick. He's been put on Augmentin for that.
Now with the constipation. We've been having problems with that since he was put on the formula, but a lot of the meds he is on add to the problem. We've got him on colace for that.
I took Aidan to his primary doctor this morning, and she gave me a script for Zyrtec, for the allergies and Zantac for the reflux problem because he is still spiting up or vomiting occasionally after eating.
His feedings have also changed and we've now dropped to only 5 feedings a day but we went up on the volume to work in dropped feeding and we're supposed to increase the volume gradually over the next week or so. The doctors and nutritionists think that Aidan needs more calories, so we'll see how he does on their schedule, but I don't want him to gain back up to almost 50 pounds either.
I'd like to get away from using the formula as the bulk of his diet anyway. That stuff is NASTY! There isn't any reason why I can't blend up his foods or make my own "formula" that has real food and vitamins in it that work for him and his needs. I'm still hoping that one day Aidan will be able to eat normal foods by mouth and not through a tube in his belly, although, I'm okay with the tube for as long as he needs it.
The trach is another story altogether. Aidan is able to breathe on his own when the trach is capped. He is able to swallow, and he coughs... really well. I'd really like to see the trach removed by the end of the summer. I'm asking you all to pray that Aidan continues to do well and is able to be decannulized by then too. I think it is just a source of irritation to him, both in terms of his health and his overall mood.
The hyperbarics resumed today. Aidan did really well, as he has been doing since we started. I went in with him today and he fell asleep while I watched a movie and kept an eye on him. I am so appreciative of everything that Dr. Rebecca is doing for us and for Aidan. For us to be able to do 2 sessions a day, we have to drive almost 3 hours a day to and from her location, so she has been working to help us raise the funds so that we can get our own hyperbaric chamber at home. I was absolutely floored by the cost of one of these units as it seems like just like everything else Aidan needs it's extremely expensive. We could buy a brand new vehicle or put a down payment on a house for what one of these things costs.
Other things that are going on right now--Russell's mom and brother are on their way here to visit as we speak, and should arrive sometime tomorrow evening. Our van has been acting goofy. It's a 2005 but it's got a lot of miles on it and today I felt what I think is the transmission starting to slip. The blower to the a/c fan in the front went out last summer and then the locks stopped working. We've been able to deal with that, but I'm just praying that the tranny doesn't crater on us. That would really be bad since it is our only vehicle. We're going to have to find another vehicle once Russell finds a job (which I hope is soon.) And finally, I'm looking at taking an online course in medical transcription so that I can work from home. Anything right now to help bring in more income will help, but I have to come up with the $1800 to pay for the course. I don't want to take out any loans right now (and I don't think I could even if I wanted to.) Anyway- we shall see how things go. Right now the most important thing is taking care of the boys.
Please pray that Russell finds a job soon, that we are able to raise the remaining funds for the hyperbaric chamber, that Aidan's trach will be able to be removed in the near future and that he continues to progress. Thanks to everyone for your love and support and the many, many prayers. We are so grateful to you all!
~Erin
- Thread Starter Thread Starter
- #176
Friday, April 25, 2008
possible surgery
I got a call yesterday from the pediatric surgeons office. It seems Aidan's doctors have been discussing the option of him having a device called a "Nissan" put in his tummy to prevent the reflux that he is having. This device is usually put in place at the same time as the g-tube surgery, but it wasn't in Aidan's case. They want to do the surgery this coming week, and we have an appointment to see both surgeons on Monday afternoon, after our appointment with Aidan's neurologist.
I think the surgery is a good idea because Aidan is having multiple vomiting episodes every day. It still has a lot of mucus in it. I don't know what is going to make the mucus go away, but he just has SO much of it.
Russell's mom and brother arrived yesterday evening. I'm glad that they got here safely. We've missed them both so much, and our nephew, Seth, as well. It's a toss up. Being closer physically to one family over the other one. We had planned to get back to OK sooner, but with the whole job situation leading up to Aidan's accident and then the accident itself, nothing ever seems to work out.
I'll be able to post more on Monday once I know more about the surgery and get a chance to talk with the neurologist about things. I don't really know where things stand at this point. Sorry I don't have better news.
Please pray with us that this surgery will help Aidan's reflux problem and that we're able to get the secretions to dry up so that he is more comfortable. Thank you, everyone!
possible surgery
I got a call yesterday from the pediatric surgeons office. It seems Aidan's doctors have been discussing the option of him having a device called a "Nissan" put in his tummy to prevent the reflux that he is having. This device is usually put in place at the same time as the g-tube surgery, but it wasn't in Aidan's case. They want to do the surgery this coming week, and we have an appointment to see both surgeons on Monday afternoon, after our appointment with Aidan's neurologist.
I think the surgery is a good idea because Aidan is having multiple vomiting episodes every day. It still has a lot of mucus in it. I don't know what is going to make the mucus go away, but he just has SO much of it.
Russell's mom and brother arrived yesterday evening. I'm glad that they got here safely. We've missed them both so much, and our nephew, Seth, as well. It's a toss up. Being closer physically to one family over the other one. We had planned to get back to OK sooner, but with the whole job situation leading up to Aidan's accident and then the accident itself, nothing ever seems to work out.
I'll be able to post more on Monday once I know more about the surgery and get a chance to talk with the neurologist about things. I don't really know where things stand at this point. Sorry I don't have better news.
Please pray with us that this surgery will help Aidan's reflux problem and that we're able to get the secretions to dry up so that he is more comfortable. Thank you, everyone!
I just finally got caught up on these past few days... it's just up and down and up and down, it seems. I will be thinking of you all and hoping for a good long upward trend, and of course, for an end to these excessive secretions and all the problems they cause. Love to little Aidan...
- Thread Starter Thread Starter
- #178
Monday, April 28, 2008
Since Saturday evening, Aidan has not had any episodes of reflux or vomiting. I decided to add some baby rice with bananas to his formula and decrease the volume of formula by the calories in the cereal. So far this has also helped him sleep better at night. He's still getting the same amount of calories but it's less volume and it's something semi-solid that his stomach can actually digest better. Liquids don't sit on your stomach the same way regular food does, and if someone were pushing your entire meal into your stomach in less than 2 minutes, it would make you sick too.
We still have the appointment with the surgeons to discuss the nissan procedure, but I don't think we're going to do it unless it's our last resort. I don't want to put Aidan through another surgery unless it's really necessary. If changing his diet will fix the problem, then that's what I'd rather do. It's been my plan all along to change it anyway- as I've said before, the formula he is on is nasty. All formula is nasty. The only good thing about it is that it is convienient.
Today is also our follow-up appointment with Aidan's neurologist. I'm not sure what to expect there. I'd like to see about getting a SPECT scan done as well as another MRI to see if there is any further damage. The SPECT scan is the one that shows the brain activity in color. It will help us get a better visual idea of the extent of Aidan's injury.
Russell's mom and brother head back to Oklahoma this morning. Please say a prayer for them that they have a safe trip. It's a long drive (about 18-20 hours), even though they are going to stop overnight.
We are trying to organize a golf tournament fundraiser for June. Russell has been working out the details so I don't know much about it. The bracelets should be here in the next day or so. I'll post a picture of them and post info about purchasing them as soon as they arrive.
Thank you everyone for your prayers and your efforts to help raise money for Aidan's treatments, gas to those treatments and special equpiment not covered by insurance. We would not be able to do this if it weren't for your generosity.
I'll post more later after we meet with the doctors.
~Erin
Since Saturday evening, Aidan has not had any episodes of reflux or vomiting. I decided to add some baby rice with bananas to his formula and decrease the volume of formula by the calories in the cereal. So far this has also helped him sleep better at night. He's still getting the same amount of calories but it's less volume and it's something semi-solid that his stomach can actually digest better. Liquids don't sit on your stomach the same way regular food does, and if someone were pushing your entire meal into your stomach in less than 2 minutes, it would make you sick too.
We still have the appointment with the surgeons to discuss the nissan procedure, but I don't think we're going to do it unless it's our last resort. I don't want to put Aidan through another surgery unless it's really necessary. If changing his diet will fix the problem, then that's what I'd rather do. It's been my plan all along to change it anyway- as I've said before, the formula he is on is nasty. All formula is nasty. The only good thing about it is that it is convienient.
Today is also our follow-up appointment with Aidan's neurologist. I'm not sure what to expect there. I'd like to see about getting a SPECT scan done as well as another MRI to see if there is any further damage. The SPECT scan is the one that shows the brain activity in color. It will help us get a better visual idea of the extent of Aidan's injury.
Russell's mom and brother head back to Oklahoma this morning. Please say a prayer for them that they have a safe trip. It's a long drive (about 18-20 hours), even though they are going to stop overnight.
We are trying to organize a golf tournament fundraiser for June. Russell has been working out the details so I don't know much about it. The bracelets should be here in the next day or so. I'll post a picture of them and post info about purchasing them as soon as they arrive.
Thank you everyone for your prayers and your efforts to help raise money for Aidan's treatments, gas to those treatments and special equpiment not covered by insurance. We would not be able to do this if it weren't for your generosity.
I'll post more later after we meet with the doctors.
~Erin
- Thread Starter Thread Starter
- #179
Tuesday, April 29, 2008
doctors appointments and updates
Aidan had two doctors appointments yesterday and one today. We met with the neurologist and one of the surgeons who did Aidan's trach and g-tube to discuss the Nissen procedure. Our neurologist wasn't feeling well, so he didn't really do an exam. He asked a lot of questions and said that Aidan is looking good. He's ordered another MRI, a SPECT scan and a 2-hour EEG. They haven't been scheduled yet, but it should be soon.
The surgeon wanted to discuss the surgery because he didn't think we would want to just jump into putting Aidan through an unnecessary surgery. From what we told him, he said that it didn't sound like Aidan has reflux anyway and the nissen wouldn't help throwing up. He was glad that I took the initiative in changing Aidan's formula. He also said that Aidan was looking very good. We weighed him and he weighs just under 35 pounds, so he's gained about 6 pounds since he went to the hospital last Sunday. We'll have to go back in June to have the g-tube resized but that will be an ongoing thing every 3 months as long as he has the g-tube.
A speech therapist came out yesterday to do her initial assessment and she is going to schedule a swallow study to make sure that Aidan is able to swallow different things and not aspirate them. This is a step toward getting him to eat by mouth.
Today was the appointment with the pulmonologist. This was the first time I'd met him and I really like him. He said that Aidan was a lot better than he had expected from reading his chart, and the fact that he isn't on a vent or oxygen dependant is great. He also said that he thinks Aidan will most likely move a lot faster than he had expected in getting the trach removed because he is doing so well right now. It's all good news to me and made me get teary. I'm so ready for his trach to come out. That will be a huge step.
We're doing a month of breathing treatments and then we'll go back for another check-up and the doctor will schedule a bronchioscopy to go in and take a look at Aidan's lungs along with some other things. The next step will be to get him a passy-muir or PMV. The PMV is a one way valve that fits over the trach and will allow Aidan to breathe in through the trach, but he will have to force the air out through his nose or mouth. This will allow him to talk or cry like normal. If he does well with that, then we can start putting a cap over the trach which blocks it completely. We've experimented with doing the capping while Aidan was in rehab and he did pretty well with it.
So far, everything is looking up. Aidan continues to surpass the doctors expectations, and we're seeing new things in him every day. Today for instance, I had a Thomas book that we had bought him the day before his accident and I took his hand to push the buttons on it that make sounds like the trains and he relaxed his hand so that I could help him push them again. He also rolled from his side where the nurse had propped him, to his back. He was well supported so it wasn't an accident. He also moved his mouth when Russell went in to give him goodnight kisses and squeezed his finger. It's little things, but those little things mean a whole lot to us.
I am so amazed at the power of prayer, and at everyone's outpouring of love and support for our family. Please pray that Aidan continues to supass all of our expectations and makes a miraculous recovery. God continues to prove to me every day just how great and awesome He is.
Bless you all!
~Erin
doctors appointments and updates
Aidan had two doctors appointments yesterday and one today. We met with the neurologist and one of the surgeons who did Aidan's trach and g-tube to discuss the Nissen procedure. Our neurologist wasn't feeling well, so he didn't really do an exam. He asked a lot of questions and said that Aidan is looking good. He's ordered another MRI, a SPECT scan and a 2-hour EEG. They haven't been scheduled yet, but it should be soon.
The surgeon wanted to discuss the surgery because he didn't think we would want to just jump into putting Aidan through an unnecessary surgery. From what we told him, he said that it didn't sound like Aidan has reflux anyway and the nissen wouldn't help throwing up. He was glad that I took the initiative in changing Aidan's formula. He also said that Aidan was looking very good. We weighed him and he weighs just under 35 pounds, so he's gained about 6 pounds since he went to the hospital last Sunday. We'll have to go back in June to have the g-tube resized but that will be an ongoing thing every 3 months as long as he has the g-tube.
A speech therapist came out yesterday to do her initial assessment and she is going to schedule a swallow study to make sure that Aidan is able to swallow different things and not aspirate them. This is a step toward getting him to eat by mouth.
Today was the appointment with the pulmonologist. This was the first time I'd met him and I really like him. He said that Aidan was a lot better than he had expected from reading his chart, and the fact that he isn't on a vent or oxygen dependant is great. He also said that he thinks Aidan will most likely move a lot faster than he had expected in getting the trach removed because he is doing so well right now. It's all good news to me and made me get teary. I'm so ready for his trach to come out. That will be a huge step.
We're doing a month of breathing treatments and then we'll go back for another check-up and the doctor will schedule a bronchioscopy to go in and take a look at Aidan's lungs along with some other things. The next step will be to get him a passy-muir or PMV. The PMV is a one way valve that fits over the trach and will allow Aidan to breathe in through the trach, but he will have to force the air out through his nose or mouth. This will allow him to talk or cry like normal. If he does well with that, then we can start putting a cap over the trach which blocks it completely. We've experimented with doing the capping while Aidan was in rehab and he did pretty well with it.
So far, everything is looking up. Aidan continues to surpass the doctors expectations, and we're seeing new things in him every day. Today for instance, I had a Thomas book that we had bought him the day before his accident and I took his hand to push the buttons on it that make sounds like the trains and he relaxed his hand so that I could help him push them again. He also rolled from his side where the nurse had propped him, to his back. He was well supported so it wasn't an accident. He also moved his mouth when Russell went in to give him goodnight kisses and squeezed his finger. It's little things, but those little things mean a whole lot to us.
I am so amazed at the power of prayer, and at everyone's outpouring of love and support for our family. Please pray that Aidan continues to supass all of our expectations and makes a miraculous recovery. God continues to prove to me every day just how great and awesome He is.
Bless you all!
~Erin
- Thread Starter Thread Starter
- #180
news story just done on Aidan, i am still crying so i will update this later when i can, i didnt realize how much i miss them. Seeing them on video and hearing their voices... russ just isnt in as good shape as he puts on... i cant even begin to explain.
