We are home. AJ really improved once we arrived home. At the hospital he cried if we even tried to even sit him up. Here at home he is moving much better.
It's late, I'm tired so I will update later but I wanted you to know that we are home.
Barbara and AJ
Friday, June 8, 2012
Thursday, June 7, 2012
Lots of good news
So exciting to have good news tonight.
AJ's g-tube surgery went very well. He is in a lot of pain but handling it well. Sometimes a bit too well. He refuses pain medication but we have over ruled him a few times.
We start feeds in two hours and if he does well we "might" go home tomorrow!
Big news. They have a new procedure for G tubes. They don't put mickey's in anymore but use an AMT. The AMT is great and I am so happy to have switched. It is a much better design than the mickey and won't pull out as easily. The goal is to keep this tube from coming out for six weeks. Because it is apple shaped (flat on top) it will not pull out neatly like a regular mickey balloon. It's much more stable and it is smaller than a mickey.
Bigger news. With their new G-tube procedure they don't use any internal stitches that could abscess. There are only two stitches holding the AMT in place. Tomorrow those two stitches will be removed and it is only the AMT holding the stomach up to the abdominal wall. It makes me a bit nervous but it means AJ's primary source of infection is gone.
AJ has an open wound where the old g-tube went through his abdominal wall. We will keep it packed and draining and it will hopefully close up in a week or two.
Thank you for all of your prayers. The outcome looks great and it won't be long that AJ will be up and around, bubbly as ever.
Gotta Go as AJ is calling. We are blessed,
Barbara and AJ
AJ's g-tube surgery went very well. He is in a lot of pain but handling it well. Sometimes a bit too well. He refuses pain medication but we have over ruled him a few times.
We start feeds in two hours and if he does well we "might" go home tomorrow!
Big news. They have a new procedure for G tubes. They don't put mickey's in anymore but use an AMT. The AMT is great and I am so happy to have switched. It is a much better design than the mickey and won't pull out as easily. The goal is to keep this tube from coming out for six weeks. Because it is apple shaped (flat on top) it will not pull out neatly like a regular mickey balloon. It's much more stable and it is smaller than a mickey.
Bigger news. With their new G-tube procedure they don't use any internal stitches that could abscess. There are only two stitches holding the AMT in place. Tomorrow those two stitches will be removed and it is only the AMT holding the stomach up to the abdominal wall. It makes me a bit nervous but it means AJ's primary source of infection is gone.
AJ has an open wound where the old g-tube went through his abdominal wall. We will keep it packed and draining and it will hopefully close up in a week or two.
Thank you for all of your prayers. The outcome looks great and it won't be long that AJ will be up and around, bubbly as ever.
Gotta Go as AJ is calling. We are blessed,
Barbara and AJ
Wednesday, June 6, 2012
Surgery tomorrow
Sorry for the long delay. AJ is doing well but I wanted you to know about his scheduled surgery for tomorrow.
He will have a gtube revision as his stomach lining is retracting through the current opening. They will open a new site and the old opening will have to be left open until it heals as it would get infected if they close it. AJ's history shows that he does not tolerate sutures that are meant to dissolve. Instead they become infected fistulas; usually with MRSA. There are no other options to hold his stomach to his muscle wall so we have planned on a long recovery with the expectation of multiple infections.
Thank you for your prayers. God is so faithful to us and has provided great physicians to meet his physical needs. AJ is looking forward to a reduction in his pain. He is especially excited to watch hours of TV; me, not so much.
God is good; all the time,
Barbara and AJ
He will have a gtube revision as his stomach lining is retracting through the current opening. They will open a new site and the old opening will have to be left open until it heals as it would get infected if they close it. AJ's history shows that he does not tolerate sutures that are meant to dissolve. Instead they become infected fistulas; usually with MRSA. There are no other options to hold his stomach to his muscle wall so we have planned on a long recovery with the expectation of multiple infections.
Thank you for your prayers. God is so faithful to us and has provided great physicians to meet his physical needs. AJ is looking forward to a reduction in his pain. He is especially excited to watch hours of TV; me, not so much.
God is good; all the time,
Barbara and AJ
Monday, May 7, 2012
As Promised
Pictures as promised.
.jpeg)
AJ in his new sandbox
.jpeg)
Our fenced back yard
Psalm 118:21-25
I thank you that you have answered me
and have become my salvation.
The stone that the builders rejected
has become the cornerstone.
This is the Lord's doing;
it is marvelous in our eyes.
This is the day the the Lord has made;
let us rejoice and be glad in it.
Thank you Lord for a beautiful day.
Barbara and AJ
Sunday, May 6, 2012
Back in Action
I'm back and that is big news for me since it means I am feeling better. Sorry for the long break but I ended up sick for almost five weeks and blogging was not at the top of my list.
AJ is doing well. He is enjoying his new sandbox. I had always stated that I would not get him a sandbox. I pictured sand in his bandages and wounds; what a mess that would be. Then spring came and he found every pile of dirt that he could and was digging away with his little shovel. He needed a sandbox. What little boy can go without one? EB or not, we decided to get him a sandbox.
We went to the store and bought him a little green turtle sandbox. I'm sure you've seen them. Well we brought it home along with bags of sand. We filled it up and he climbed right in "literally" and there was no room left - his body filled the entire sandbox. AJ is not able to kneel for any period of time so sitting in the sandbox is the only way this was going to work. This little turtle was so tiny that there was no room for his toys. We went back to the store and bought a larger one, brought it home and transferred the sand over to it. If you know me very well, you know that I hate, meaning I hate to return purchases to the store but I had to bite the bullet and get the right size box for him. I'm happy with it now because it has a great cover and is big enough for AJ, his shovel and trucks.
AJ loves it because he can dig and throw sand - oops - I had not considered that. Sand flying in the air naturally flies into eyes. On his first day in his new sandbox, he got sand in his eye. I felt so badly as AJ's eyes have been so great but sand could do so much damage by causing eye blisters. I felt like I had made a horrible mistake. We got the sand out of his eye and I talked with AJ about eye blisters and the sand. He seemed like he understood and so far so good - no more sand in eyes and no blisters. As for sand in the bandages; yup. Bath and bandage change now involves sweeping up sand. It goes through every layer of bandage, on the floor and in the tub. I'm Ok with it because he is getting to be a normal little boy that loves sand, shovels and trucks. I wish I had pictures for you....maybe tomorrow.
Our backyard is now officially fenced in. I am so glad it is completed. We have little finishing touches but AJ is safer and I have a greater peace of mind. We are still outside with AJ when he plays in the yard but it helps to have the boundaries clear and the road seems a bit more out of reach.
Thanks to everyone that has inquired of us. Hopefully you will hear from us often.
Barbara and AJ
AJ is doing well. He is enjoying his new sandbox. I had always stated that I would not get him a sandbox. I pictured sand in his bandages and wounds; what a mess that would be. Then spring came and he found every pile of dirt that he could and was digging away with his little shovel. He needed a sandbox. What little boy can go without one? EB or not, we decided to get him a sandbox.
We went to the store and bought him a little green turtle sandbox. I'm sure you've seen them. Well we brought it home along with bags of sand. We filled it up and he climbed right in "literally" and there was no room left - his body filled the entire sandbox. AJ is not able to kneel for any period of time so sitting in the sandbox is the only way this was going to work. This little turtle was so tiny that there was no room for his toys. We went back to the store and bought a larger one, brought it home and transferred the sand over to it. If you know me very well, you know that I hate, meaning I hate to return purchases to the store but I had to bite the bullet and get the right size box for him. I'm happy with it now because it has a great cover and is big enough for AJ, his shovel and trucks.
AJ loves it because he can dig and throw sand - oops - I had not considered that. Sand flying in the air naturally flies into eyes. On his first day in his new sandbox, he got sand in his eye. I felt so badly as AJ's eyes have been so great but sand could do so much damage by causing eye blisters. I felt like I had made a horrible mistake. We got the sand out of his eye and I talked with AJ about eye blisters and the sand. He seemed like he understood and so far so good - no more sand in eyes and no blisters. As for sand in the bandages; yup. Bath and bandage change now involves sweeping up sand. It goes through every layer of bandage, on the floor and in the tub. I'm Ok with it because he is getting to be a normal little boy that loves sand, shovels and trucks. I wish I had pictures for you....maybe tomorrow.
Our backyard is now officially fenced in. I am so glad it is completed. We have little finishing touches but AJ is safer and I have a greater peace of mind. We are still outside with AJ when he plays in the yard but it helps to have the boundaries clear and the road seems a bit more out of reach.
Thanks to everyone that has inquired of us. Hopefully you will hear from us often.
Barbara and AJ
Sunday, April 8, 2012
Happy Easter
I hope everyone had a wonderful Easter.
We were so blessed to attend church
and worship our risen Savior.
In the afternoon we had lunch with family
and our traditional Easter egg hunt.
AW brought home friends from college.
It was great to have them here to share in the celebration.
I Corinthians 15:20-24
Christ really has been raised from the dead.
He is the first of all those who will rise.
Death came because of what a man did.
Rising from the dead also comes because of what a man did.
Because of Adam, all people die.
So because of Christ, all will be made alive.
But here is the order of events.
Christ is the first of those who rise from the dead.
When he comes back, those who belong to him will be raised.
Then the end will come.
Christ will destroy all rule, authority and power.
He will hand over the kingdom to God the Father.
The resurrection is a reality.
If it were not true, our faith would be futile and all hope gone.
He is risen, He is risen indeed!
Barbara
Wednesday, April 4, 2012
Doctor, doctor
Dear Dr,
Today was our first appointment with you, our new urologist. AJ is always excited to meet his new doctors and it would have been nice if you had talked to him. He kept talking to you but you seemed too preoccupied to listen. I know it is hard to have a medical conversation when a four year old is continually trying to talk but had you taken the time to answer him, he would have quieted down. You are a PEDIATRIC urologist; you must be used to children in your office.
I will admit that I was not thrilled that you had never heard of AJ's disorder. It didn't build any confidence in me when you read his chart and kept trying to say Epidermolysis Bullosa but instead it came out, "Ep...i...deeeer...mlsis Bu...ll....usa". I had hoped you would have read the chart prior to us coming but I do understand you are busy.
I really do Ok if a doctor states that they don't know about EB but are willing to learn. I wish you had said that. Making a plan for AJ's care when you don't have any idea what medical problems EB causes; seems foolish. I wish you had asked questions. You appeared surprised when I told you that we were not following your thrown together plan and we were not doing the tests you suggested. What did you expect? You still were ignoring AJ, who at this time was yelling, "Pee, Pee" louder and louder. He wanted to tell you his troubles. I had told him we were coming to visit a doctor that wanted to help.
You are the urology specialist but I am AJ's EB specialist. Today I have more confidence in the nameless residents that we would meet in the emergency room should AJ have a sudden urethra blockage. We have a long way to go in our medical working relationship.
We were in your office less than three to four minutes and suddenly you were finished. You stated you were prepared to treat AJ appropriately should he have any emergent,serious, urology complication. It's too bad I feel less prepared after meeting you. I only hope you remember AJ and have an interest in reading about EB.
Dr, I'm glad to be back home. Away from your office where you appear more of a threat to AJ's medical well being rather than a member of his care team. I am thankful that AJ does not need a medical intervention today. I am also thankful that I have met other doctors that appeared arrogant upon their first meeting AJ and then later studied his disorder and apologized for their unwillingness to listen to us. I still have hope for you.
Don't worry about AJ (though I have no idea why you would). He is still happy. Your lack of words with him did not mess with his day. He even enjoyed the wait in your large waiting room. He especially enjoyed asking (loudly) if the men that walked up to the registration desk had problems with their "Pee Pee's" too. When we left your office the nurses were extremely surprised that our appointment was over so quickly. They gave AJ lots of dinosaur toys and stickers. They knew that "Pediatric" means Kids!
Until we meet again (hopefully not for a long time)
Barbara and AJ
Today was our first appointment with you, our new urologist. AJ is always excited to meet his new doctors and it would have been nice if you had talked to him. He kept talking to you but you seemed too preoccupied to listen. I know it is hard to have a medical conversation when a four year old is continually trying to talk but had you taken the time to answer him, he would have quieted down. You are a PEDIATRIC urologist; you must be used to children in your office.
I will admit that I was not thrilled that you had never heard of AJ's disorder. It didn't build any confidence in me when you read his chart and kept trying to say Epidermolysis Bullosa but instead it came out, "Ep...i...deeeer...mlsis Bu...ll....usa". I had hoped you would have read the chart prior to us coming but I do understand you are busy.
I really do Ok if a doctor states that they don't know about EB but are willing to learn. I wish you had said that. Making a plan for AJ's care when you don't have any idea what medical problems EB causes; seems foolish. I wish you had asked questions. You appeared surprised when I told you that we were not following your thrown together plan and we were not doing the tests you suggested. What did you expect? You still were ignoring AJ, who at this time was yelling, "Pee, Pee" louder and louder. He wanted to tell you his troubles. I had told him we were coming to visit a doctor that wanted to help.
You are the urology specialist but I am AJ's EB specialist. Today I have more confidence in the nameless residents that we would meet in the emergency room should AJ have a sudden urethra blockage. We have a long way to go in our medical working relationship.
We were in your office less than three to four minutes and suddenly you were finished. You stated you were prepared to treat AJ appropriately should he have any emergent,serious, urology complication. It's too bad I feel less prepared after meeting you. I only hope you remember AJ and have an interest in reading about EB.
Dr, I'm glad to be back home. Away from your office where you appear more of a threat to AJ's medical well being rather than a member of his care team. I am thankful that AJ does not need a medical intervention today. I am also thankful that I have met other doctors that appeared arrogant upon their first meeting AJ and then later studied his disorder and apologized for their unwillingness to listen to us. I still have hope for you.
Don't worry about AJ (though I have no idea why you would). He is still happy. Your lack of words with him did not mess with his day. He even enjoyed the wait in your large waiting room. He especially enjoyed asking (loudly) if the men that walked up to the registration desk had problems with their "Pee Pee's" too. When we left your office the nurses were extremely surprised that our appointment was over so quickly. They gave AJ lots of dinosaur toys and stickers. They knew that "Pediatric" means Kids!
Until we meet again (hopefully not for a long time)
Barbara and AJ
Subscribe to:
Posts (Atom)