Wednesday, January 28, 2009
We are moving.....
.....the blog that is! We have a new website for Aiden! It is www.aidenscross.com
we will be posting all new updates, blogs, etc...there...
Be sure to stop by often for updates on fundraising, Aiden's Cross and on the cute little toot himself!
Be sure to sign our guestbook! :)
we will be posting all new updates, blogs, etc...there...
Be sure to stop by often for updates on fundraising, Aiden's Cross and on the cute little toot himself!
Be sure to sign our guestbook! :)
Tuesday, January 27, 2009
A week at home!!!
Yay! Most of you probably already know by now (because I could not contain my excitement!) but we don't have to go to Dallas this week!!! YAY!!! We had Aiden's labs drawn here in town yesterday and his nephrologist felt that they were good enough that we could skip pheresis this week and stay home for Aiden to continue to recover from the RSV. He is doing great...getting his energy back and is more like his usual happy-go-lucky self! Thanks for all the prayers!
Some very dear friends and 1 awesome family member have been working tirelessly to set up a "non-profit" type account where people could donate "tax-free" to help out with Aiden's medical expenses. We appreciate them doing this so much and could not ask for better friends than those who would take this on of their own accord and want so much to help out our little toot during these hard times. They have asked that I let everyone who reads the blog know that the account is ready to go--it is at Citizens Bank in Kilgore Texas and any donations can be made there to the Aiden Cross Fund -- Tax # 30-0527404. I pray you do not feel that I am pressuring anyone to do this by mentioning it here--We do not expect or ask for anything other than your prayers and thoughts about our little toot, but many have asked if there was such an account..and now there is! :)
I'm off to drink some coffee and get started on some housework..YAY--can you believe I'm actually excited about that?! It's good to be home! :)
Much Love,
Christy, David and Toot
Some very dear friends and 1 awesome family member have been working tirelessly to set up a "non-profit" type account where people could donate "tax-free" to help out with Aiden's medical expenses. We appreciate them doing this so much and could not ask for better friends than those who would take this on of their own accord and want so much to help out our little toot during these hard times. They have asked that I let everyone who reads the blog know that the account is ready to go--it is at Citizens Bank in Kilgore Texas and any donations can be made there to the Aiden Cross Fund -- Tax # 30-0527404. I pray you do not feel that I am pressuring anyone to do this by mentioning it here--We do not expect or ask for anything other than your prayers and thoughts about our little toot, but many have asked if there was such an account..and now there is! :)
I'm off to drink some coffee and get started on some housework..YAY--can you believe I'm actually excited about that?! It's good to be home! :)
Much Love,
Christy, David and Toot
Thursday, January 22, 2009
just an update
So, it's Thursday and we are still here. Me and Toot are anyways..David had to go back to stupid work..boo!
Let's see....where to start???
Aiden's surgery is being postponed because we found out that the fever that started last week is from....RSV. Right. You have got to be kidding me.....I'm sure he picked it up at one of our many hospital trips. It's a nasty respiratory virus and takes a few weeks to get completely over. The surgeon wants to make sure he is in the clear before surgery because he will have to be put under for the procedure and we don't want to risk respiratory complications and ICU and ventilators....you get the picture...Toot also has an ear infection that they think started because of all the pressure from all the coughing. His temp got up to 104.5 on Tuesday. Poor baby. He just feels rotten. He just lays around and sleeps(like he is doing now).
We were going to come home yesterday but Aiden's blood count was low. (7.8) so he received an additional dose of EPO last night and they rechecked his labs this morning. His blood count is now up to 8.8 but his stinkin' platelets are 95. Seriously?! I am thinking we will still get to go home, but unsure at this point. Waiting on the Dr. to get here.
Hoping to be home soon,
Christy and Toot
Let's see....where to start???
Aiden's surgery is being postponed because we found out that the fever that started last week is from....RSV. Right. You have got to be kidding me.....I'm sure he picked it up at one of our many hospital trips. It's a nasty respiratory virus and takes a few weeks to get completely over. The surgeon wants to make sure he is in the clear before surgery because he will have to be put under for the procedure and we don't want to risk respiratory complications and ICU and ventilators....you get the picture...Toot also has an ear infection that they think started because of all the pressure from all the coughing. His temp got up to 104.5 on Tuesday. Poor baby. He just feels rotten. He just lays around and sleeps(like he is doing now).
We were going to come home yesterday but Aiden's blood count was low. (7.8) so he received an additional dose of EPO last night and they rechecked his labs this morning. His blood count is now up to 8.8 but his stinkin' platelets are 95. Seriously?! I am thinking we will still get to go home, but unsure at this point. Waiting on the Dr. to get here.
Hoping to be home soon,
Christy and Toot
Monday, January 19, 2009
and the forecast calls for...more rain
We are beginning to think that we have a rain cloud following us around. Just think Murphy's law x100. We had a weekend of "weird" stuff going on with Aiden.
He started looking puffy and fluid overloaded on Friday so we had to up his dialysis concentration to 2% Dextrose in order to try to pull more fluid off. About the same time that the fluid thing happened he developed a cough, which we thought was probably related to the fluid. Saturday night he began to scream like he was in pain and could not sit still. After looking him over I noticed that his testicles looked more swollen than usual and off-color. 10 minutes later they were almost purple and rock hard. I freaked and began making calls to dr.s and making steps to take him off dialysis to get him to the ER. While I was doing this, he fell asleep in Mimi's arms and when I checked his diaper area again, everything was normal. I pushed on everything and he didn't react at all. Then only thing off was a little puffy raised area near the top of the testicle. I thought maybe I was crazy at that point! Since he was obviously not in any pain and everything was back to normal we stayed home and he did fine through the night and woke up in a good mood.
During the early afternoon, Sunday, he spiked a temp of 102.1. With Aiden there are so many possibilites for infection with his central line, dialysis site, the cough, etc. that I was not comfortable just medicating him and letting it go. I called Dr. Chaikin (his pediatrician) and she agreed 100%. She talked to Dr. Quan and we all agreed that it made no sense to go to the local hospital when A. they would just want to send us to Dallas because of Aiden's history and B. we were supposed to leave for Dallas Monday anyway. So Aiden, Mary Lou (thanks Lou!) and I made the trip to Dallas and checked in through the ER here and were admitted to the pediatric floor late last night.
So far his chest Xray and labs look good. From the way it looks so far the cough and temp may be something viral. We have sent blood cultures (peripheral and from his Central Line) and PD (peritoneal dialysis) fluid to make sure there is no infection there. Praying it's just something simple that has to run it's course.
When I told Dr. Quan what had happened with the testicles the day before he knew immediatley what was going on. Okay, so I'm not crazy after all. Apparently Aiden has developed a hernia on both sides of his groin. A loop of his bowel has slipped through on both sides. When he gets upset and tenses up it can squeeze the bowel at the opening where it has slipped through..causing the pain, hardness and discoloration, etc. When he relaxes the blood flow returns to normal, the pain is relieved etc....We also noted that he has developed a umbilical hernia.
So of course, this means more surgery. Dr. Quan is contacting the surgeon today to see when they can schedule Aiden--I will let y'all know as soon as I know. It will be a minor surgery. After the surgery we will have to cut down on the volume of dialysis fluid until things have time to heal up.
I don't even know what to say at this point. I don't understand why these things keep happening. We just want to deal with one thing, ya know? Please continue to pray for us--it is really hard to understand the why's and hows at this point. We feel like we are emotionally and physically stretched to our limit already--but as always, we will do whatever it takes to keep our toot healthy and upbeat.
I will update as I know more.
Love y'all--
Christy, David and Tootbug
He started looking puffy and fluid overloaded on Friday so we had to up his dialysis concentration to 2% Dextrose in order to try to pull more fluid off. About the same time that the fluid thing happened he developed a cough, which we thought was probably related to the fluid. Saturday night he began to scream like he was in pain and could not sit still. After looking him over I noticed that his testicles looked more swollen than usual and off-color. 10 minutes later they were almost purple and rock hard. I freaked and began making calls to dr.s and making steps to take him off dialysis to get him to the ER. While I was doing this, he fell asleep in Mimi's arms and when I checked his diaper area again, everything was normal. I pushed on everything and he didn't react at all. Then only thing off was a little puffy raised area near the top of the testicle. I thought maybe I was crazy at that point! Since he was obviously not in any pain and everything was back to normal we stayed home and he did fine through the night and woke up in a good mood.
During the early afternoon, Sunday, he spiked a temp of 102.1. With Aiden there are so many possibilites for infection with his central line, dialysis site, the cough, etc. that I was not comfortable just medicating him and letting it go. I called Dr. Chaikin (his pediatrician) and she agreed 100%. She talked to Dr. Quan and we all agreed that it made no sense to go to the local hospital when A. they would just want to send us to Dallas because of Aiden's history and B. we were supposed to leave for Dallas Monday anyway. So Aiden, Mary Lou (thanks Lou!) and I made the trip to Dallas and checked in through the ER here and were admitted to the pediatric floor late last night.
So far his chest Xray and labs look good. From the way it looks so far the cough and temp may be something viral. We have sent blood cultures (peripheral and from his Central Line) and PD (peritoneal dialysis) fluid to make sure there is no infection there. Praying it's just something simple that has to run it's course.
When I told Dr. Quan what had happened with the testicles the day before he knew immediatley what was going on. Okay, so I'm not crazy after all. Apparently Aiden has developed a hernia on both sides of his groin. A loop of his bowel has slipped through on both sides. When he gets upset and tenses up it can squeeze the bowel at the opening where it has slipped through..causing the pain, hardness and discoloration, etc. When he relaxes the blood flow returns to normal, the pain is relieved etc....We also noted that he has developed a umbilical hernia.
So of course, this means more surgery. Dr. Quan is contacting the surgeon today to see when they can schedule Aiden--I will let y'all know as soon as I know. It will be a minor surgery. After the surgery we will have to cut down on the volume of dialysis fluid until things have time to heal up.
I don't even know what to say at this point. I don't understand why these things keep happening. We just want to deal with one thing, ya know? Please continue to pray for us--it is really hard to understand the why's and hows at this point. We feel like we are emotionally and physically stretched to our limit already--but as always, we will do whatever it takes to keep our toot healthy and upbeat.
I will update as I know more.
Love y'all--
Christy, David and Tootbug
Thursday, January 15, 2009
A Good Week!
YAY!! It's been a great week for Aiden and for us too! First off, Aiden's bloodwork looked absolutely wonderful on Monday evening when we checked into the hospital. His blood count was actually in normal range--something I have NEVER seen, even before his diagnosis! His electrolytes looked great and his kidney function tests, while not normal, were an improvement from last week. Maybe pheresis twice per week is going to do the trick?! I'm praying for another great lab report when we check in this coming Monday. Aiden is running around having a great time UNcleaning the house as I desperately try to clean faster than he UNcleans...ha, guess who's winning that race?
Aiden and I are meeting with Sterling Grace owner, Deborah Harter tomorrow to make more plans for "Aiden's Cross" She has already completed the design and I cannot wait to see it! I am absolutely thrilled that she has not only agreed to do this but has taken it on whole-heartedly and is working through her many, many contacts to spread the awareness about Aiden and Atypical HUS. She is truly a God-send. More on that after our meeting tomorrow!
I am encouraged. For the past week and a half I've felt the peace of God finally return to me and I can see a change in David, too. I still don't understand the why's, but I truly believe that God has a plan. Thanks to whoever it was who prayed specifically for that "peace that passes understanding"--Ha, I know YOU are out there--just don't know which one of you it is. It is now our goal to not only live each day to the fullest and with Aiden-like zeal but to spread the word about Atypical HUS to all who will listen. Look out Oprah--here we come! ;)
A very special thanks to ALL of our wonderful friends and as always to Mimi! We have a wealth of love and support from great friends and it lifts us up to know you care.
Please continue to be in prayer for more good news for Aiden and for the "Aiden's Cross" project. Also--please say a special prayer for the family of Caden White (www.cadenwhite.com) and for the family of Mellissa Ybarra and specifically, Ian their sweet son.
Love to all,
Christy, David and Toot
Aiden and I are meeting with Sterling Grace owner, Deborah Harter tomorrow to make more plans for "Aiden's Cross" She has already completed the design and I cannot wait to see it! I am absolutely thrilled that she has not only agreed to do this but has taken it on whole-heartedly and is working through her many, many contacts to spread the awareness about Aiden and Atypical HUS. She is truly a God-send. More on that after our meeting tomorrow!
I am encouraged. For the past week and a half I've felt the peace of God finally return to me and I can see a change in David, too. I still don't understand the why's, but I truly believe that God has a plan. Thanks to whoever it was who prayed specifically for that "peace that passes understanding"--Ha, I know YOU are out there--just don't know which one of you it is. It is now our goal to not only live each day to the fullest and with Aiden-like zeal but to spread the word about Atypical HUS to all who will listen. Look out Oprah--here we come! ;)
A very special thanks to ALL of our wonderful friends and as always to Mimi! We have a wealth of love and support from great friends and it lifts us up to know you care.
Please continue to be in prayer for more good news for Aiden and for the "Aiden's Cross" project. Also--please say a special prayer for the family of Caden White (www.cadenwhite.com) and for the family of Mellissa Ybarra and specifically, Ian their sweet son.
Love to all,
Christy, David and Toot
Friday, January 9, 2009
Revolving Doors
..yep, that's what we feel like the hospital(s) are right now...just a revolving door for us. I haven't updated in a while because we've been on the go between hospitals so much. We spent last weekend in the local hospital because poor toot got a stomach bug and couldn't keep anything down. The dialysis pulls a certain amount of fluid whether there is any extra or not, so we were afraid of dehydration during dialysis without IV fluids. We literally checked out of the local hospital Monday at 9:30 a.m. went home to pack and were on the road by 11:30 headed to the hospital in Dallas where we were for pheresis until Wednesday. They have Aiden up to 2x per week on the pheresis now because his dr. didn't feel like once a week was enough. Basically we check in on Monday evening for lab work, stay the night and have pheresis Tuesday morning stay another night, have pheresis Wednesday morning and then are released and come home. I am so thankful for great friends supporting me through this and a few awesome family members. (THANKS JEN FOR NOT LETTING ME GO TO THE HOSPITAL ALONE THIS WEEK!!)
I'm unsure if the pheresis at 2x per week is changing anything or not. Basically because I don't feel like Aiden's lab work is being followed closely enough to know if there is a real difference. I am starting to think it's not a bad idea to seek a second opinion as far as treatment options are concerned. Aiden's Dr. is great, but it never hurts to have another brain to pick, especially with something that so little is known about.
Aiden's spirits are great and he is running around playing right now. He really is awesome. The only thing that really got him down was the stomach bug...poor baby felt so bad.
Still no results from Iowa...looks like they weren't kidding when they said three months...halfway there.
Great news to report! Aiden's Cross is a go!!! Deborah Harter, owner of Sterling Grace Jewelry is already working on the design. She is so very sweet and supportive of this idea and of the idea of increasing awareness of AHUS. She is truly awesome and I am honored to be able to work with her on this and so very happy that she has agree to do it! Thanks so much to you ALL for writing in and showing support for Aiden. I will keep you updated on the progress of Aiden's Cross!! :)
I will of course update on any news or changes of Aiden and plan on getting some recent pics up as soon as I have a spare minute.
Love y'all,
Christy, David and Aiden
Wednesday, December 31, 2008
Correction..oops
just a quick correction to yesterdays post...I said Aiden needed more dialysis and I meant to say he needed more pheresis! Dialysis is going well. Thanks so much for all the support for the "Aiden's Cross" idea. I contacted a local company today called Sterling Grace. www.sterlinggracejewelry.com to see if they would be interested in doing something like this. Fingers crossed!
Love y'all,
Christy, David and Toot
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