I am very happy to announce that Chris and Jessica had a little girl. Tessa Lynn Wells entered the world on Saturday at 5:19am. She weighed in at 7 pounds 3 ounces and is healthy! Mommy and Tessa came home on Sunday afternoon just in time to celebrate daddy's first father's day with his beautiful little girl.
I will post a picture as soon as I get one.
Thank you for all of your prayers.
June 22, 2009
June 19, 2009
Dr. Sheldon Appointment went well
So we had out transplant talk with Dr. Sheldon today. WOW... information overload! Like all doctors, he had to tell us the good, the bad and the ugly. The risks that go along with transplanting Max are tremendous, but Dr. Sheldon is confident that he can do it with the size that Max is now. With that said, he has told the nephrology team that he is ready when they are. It still looks like we are going to let him grow for as long as we can, but at this point I feel that it could happen at any moment.
Dr. Sheldon did tell us that preparing for the worse and having everything ready makes for a successful transplant. Because of Max's size and other health complications, Dr. Sheldon feels that he will spend 3-4 weeks in the hospital after the transplant. The majority of this stay will be in the ICU, which is where Tim and I want him. Right now, I think the major concern is the added pressure of the kidney on Max's lungs. They fear that they won't be able to get him off of the ventilator. We have been prepared to expect this for a few days, maybe longer. I have faith that God has gotten Max this far and that he isn't going to let this perfect kidney enable him from breathing on his own. That is NOT how Max is going to leave this world.
Dr. Sheldon has also decided to remove Max's right kidney. This particular kidney has grade 5 reflux which increases the risk of infection. So once he is in there he will remove it and place the new one near where it was. This will allow a little bit more room for the new kidney as well, which will hopefully help with his breathing.
With all of that said, we are glad to hear that Dr. Sheldon is feeling a little bit better about the transplant. We don't like hearing that it's going to be a very difficult surgery and that the risks are huge, but we have confidence in his surgeon. As Dr. Sheldon puts it, "I am one of the most experienced transplant surgeons that deals with cases just like Max." Cocky? Yes. I am all about cocky if it means that he feels that he can get our son through this alive. It's going to be the scariest time of our lives, even scarier than when he was first born, but we can get through it. He has the best doctors on his side and they are preparing for this surgery as best as they know how to.
Please pray for Max's team of doctors. Pray that all of their knowledge and expertise gets Max through this transplant with minimal complications. Please pray that Tim and I have the strength that we need to get through this. Most importantly, please pray for Max that he continues to fight the good fight. That he stays strong and pushes through this hurdle just like he has with the others.
One more prayer request goes out to my cousin Chris and his wife Jessica. We got a phone call this afternoon that they have arrived at the hospital to welcome their son or daughter into the world. Pray for a quick and easy labor and that little Elliot or Tessa are healthy.
Enjoy your weekend!
Dr. Sheldon did tell us that preparing for the worse and having everything ready makes for a successful transplant. Because of Max's size and other health complications, Dr. Sheldon feels that he will spend 3-4 weeks in the hospital after the transplant. The majority of this stay will be in the ICU, which is where Tim and I want him. Right now, I think the major concern is the added pressure of the kidney on Max's lungs. They fear that they won't be able to get him off of the ventilator. We have been prepared to expect this for a few days, maybe longer. I have faith that God has gotten Max this far and that he isn't going to let this perfect kidney enable him from breathing on his own. That is NOT how Max is going to leave this world.
Dr. Sheldon has also decided to remove Max's right kidney. This particular kidney has grade 5 reflux which increases the risk of infection. So once he is in there he will remove it and place the new one near where it was. This will allow a little bit more room for the new kidney as well, which will hopefully help with his breathing.
With all of that said, we are glad to hear that Dr. Sheldon is feeling a little bit better about the transplant. We don't like hearing that it's going to be a very difficult surgery and that the risks are huge, but we have confidence in his surgeon. As Dr. Sheldon puts it, "I am one of the most experienced transplant surgeons that deals with cases just like Max." Cocky? Yes. I am all about cocky if it means that he feels that he can get our son through this alive. It's going to be the scariest time of our lives, even scarier than when he was first born, but we can get through it. He has the best doctors on his side and they are preparing for this surgery as best as they know how to.
Please pray for Max's team of doctors. Pray that all of their knowledge and expertise gets Max through this transplant with minimal complications. Please pray that Tim and I have the strength that we need to get through this. Most importantly, please pray for Max that he continues to fight the good fight. That he stays strong and pushes through this hurdle just like he has with the others.
One more prayer request goes out to my cousin Chris and his wife Jessica. We got a phone call this afternoon that they have arrived at the hospital to welcome their son or daughter into the world. Pray for a quick and easy labor and that little Elliot or Tessa are healthy.
Enjoy your weekend!
June 14, 2009
13 months and Great News!
Max turned 13 months old on Friday and he got the best gift of all! His labs were the best they've been in a very long time! So good that Daddy and Max were able to skip his Saturday hemo dialysis treatment!!! Now we just have to keep our fingers crossed and say a few extra prayers that we have found the right medication regimen and that the labs continue to go in the right direction.
The peritoneal dialysis continues to go well, with an alarm here or there. We are considered to be lucky as far as the alarms go. There is a 2 year old little boy who is on the PD and his parents get woke up 3-4 times a night because of low drain volume alarms. Of course it's just because he is laying on the tube and kinking it, but it's still exhausting. Needless to say, we're not complaining about our one every other night.
Let's see. We have Max's urology appointment with Dr. Sheldon on Friday to discuss the transplant. There are a lot of questions that need to be discussed at this meeting. Tim and I are at our wits end as far as not knowing whether the transplant will happen next week or 4 years from now. We are going to push to have them set a goal for where they want him to be. He has already hit the first goal of 10 kilos. We understand that they want him to be bigger for the simple fact that it's a lot easier to transplant into someone who is 20 kilos rather than 10. But it's also not fair to us to not know whether they are wanting to wait until he is 2 years old or 4 years old. We can't have our lives put on complete hold until then. We will go completely insane. I am already going nuts not having any goals or plans in place. I am a planner, so this is killing me. So I am going to push for these answers whether it be from Dr. Sheldon or I have to get in contact with his primary nephrologist to get them. I have to get some answers.
We have a few life decisions that need to be made and we can't make them without having more information about what the plan is for Max. I'll keep you all posted as we get more information.
Also, I am working on getting birthday pictures and video up, so stay tuned :o)
The peritoneal dialysis continues to go well, with an alarm here or there. We are considered to be lucky as far as the alarms go. There is a 2 year old little boy who is on the PD and his parents get woke up 3-4 times a night because of low drain volume alarms. Of course it's just because he is laying on the tube and kinking it, but it's still exhausting. Needless to say, we're not complaining about our one every other night.
Let's see. We have Max's urology appointment with Dr. Sheldon on Friday to discuss the transplant. There are a lot of questions that need to be discussed at this meeting. Tim and I are at our wits end as far as not knowing whether the transplant will happen next week or 4 years from now. We are going to push to have them set a goal for where they want him to be. He has already hit the first goal of 10 kilos. We understand that they want him to be bigger for the simple fact that it's a lot easier to transplant into someone who is 20 kilos rather than 10. But it's also not fair to us to not know whether they are wanting to wait until he is 2 years old or 4 years old. We can't have our lives put on complete hold until then. We will go completely insane. I am already going nuts not having any goals or plans in place. I am a planner, so this is killing me. So I am going to push for these answers whether it be from Dr. Sheldon or I have to get in contact with his primary nephrologist to get them. I have to get some answers.
We have a few life decisions that need to be made and we can't make them without having more information about what the plan is for Max. I'll keep you all posted as we get more information.
Also, I am working on getting birthday pictures and video up, so stay tuned :o)
June 8, 2009
Rough Weekend
Max came home from his Saturday dialysis looking very dry. His little eyes were dark and sunken in and his lips were extremely dry. He had severe diarrhea that got to the point that it was clear and was running a low grade fever. He was also VERY cranky ALL weekend. The poor little guy ended up getting dehydrated so I had to make up a potassium free oral rehydration solution that the doctor gave me. He finally started to feel better Sunday night, but woke up this morning at 6:30 and screamed until 8:30am. Needless to say mommy and Max are very sleepy today. He is doing MUCH better this evening and is sleeping comfortably in his bed.
PD is going well. *going to knock on wood* It has officially been one week since we have been home on PD and oxygen. We've only had a few alarms which is down right amazing. (Can you believe it RCNIC nurses?) Aside from the PD, Max's numbers have been all over the place. We are working hard on getting them figured out. His phosphorus, which has been VERY high, dropped to be VERY low. It is now pretty high again although it's slowly getting better. We're definitely getting there, I hope. They are going to check his labs again on Friday after a few days of the changes that were made today. They also restarted his growth hormone. Although it stinks to have to give him a shot every day, it's a very good thing. Max only grew .4cm in the course of about 6 weeks. He had a great weight gain, but he is getting wider and not longer. My poor chunky monkey.
My final two appointments with anesthesia and my surgeon are scheduled. Max has his appointment with Dr. Sheldon on the 19th. This is the BIG transplant conversation that Tim has to take off of work to go to. He really wants to go over everything now just in case we have to move forward. Everyone is just trying to get all of their ducks in a row so that we're ready for when the time comes. As far as when this could be taking place: Anywhere from this week to 3 years. We have no idea. At this point they are just saying if he continues to tolerate dialysis, grow and develop then we are holding off. My question was at what point do we say "okay, let's transplant?" I didn't get a direct answer, so I will readdress this when I see his primary nephrologist at the end of the month.
Milestone: Max is OFFICIALLY rolling over to his belly and holding his head up, rather than face planting into the floor and having his arm stuck underneath of him so that he's not totally on his belly. YAH for Max!!! I love hitting milestones. Now we have to get him on his hands and knees!
Enjoy your week!
PD is going well. *going to knock on wood* It has officially been one week since we have been home on PD and oxygen. We've only had a few alarms which is down right amazing. (Can you believe it RCNIC nurses?) Aside from the PD, Max's numbers have been all over the place. We are working hard on getting them figured out. His phosphorus, which has been VERY high, dropped to be VERY low. It is now pretty high again although it's slowly getting better. We're definitely getting there, I hope. They are going to check his labs again on Friday after a few days of the changes that were made today. They also restarted his growth hormone. Although it stinks to have to give him a shot every day, it's a very good thing. Max only grew .4cm in the course of about 6 weeks. He had a great weight gain, but he is getting wider and not longer. My poor chunky monkey.
My final two appointments with anesthesia and my surgeon are scheduled. Max has his appointment with Dr. Sheldon on the 19th. This is the BIG transplant conversation that Tim has to take off of work to go to. He really wants to go over everything now just in case we have to move forward. Everyone is just trying to get all of their ducks in a row so that we're ready for when the time comes. As far as when this could be taking place: Anywhere from this week to 3 years. We have no idea. At this point they are just saying if he continues to tolerate dialysis, grow and develop then we are holding off. My question was at what point do we say "okay, let's transplant?" I didn't get a direct answer, so I will readdress this when I see his primary nephrologist at the end of the month.
Milestone: Max is OFFICIALLY rolling over to his belly and holding his head up, rather than face planting into the floor and having his arm stuck underneath of him so that he's not totally on his belly. YAH for Max!!! I love hitting milestones. Now we have to get him on his hands and knees!
Enjoy your week!
June 2, 2009
I wanted to take this time to thank all of you for all of your prayers and support. We truly believe it is all of you and your prayers that keeps him pulling through all of these awful things that keep getting thrown at him. He is a fighter and he is going to fight through all of this and end up a happy and healthy adult with a brand new kidney. Some day he will do something in his life that will repay all of you wonderful people for pulling him and his family through all of this.
From the bottom of our hearts, we thank you.
From the bottom of our hearts, we thank you.
That was very rude of me
Sorry for leaving all of you hanging. Yesterday was a crazy hectic day and I never got the chance to post anything. So here is the big news...
WE'RE HOME!!!!
Max had his first treatment of peritoneal dialysis last night and everything went flawless. I was a nervous wreck getting everything ready and hooking him up. You would've thought that I had never done it before. Needless to say the house is a complete disaster. We got home around 3:00, dropped everything in the living room, got Max down for a nap, met with a respiratory therapist so that she could bring out our oxygen supplies and teach us how to use them, run out to my mom and dad's to get all of the supplies, get a cart to put the machine on, eat dinner, try to enjoy a moment of being home, find all of the things that we needed before we started, get the machine hooked up and ready, hook Max up and try to clean up after all of that! Somehow we still got him hooked up a few minutes after 9pm. PHEW!
The machine was able to pull an extra 271mL off of Max last night. This is fantastic! The cycler didn't alarm once, but the pulse ox monitor did ALL night! While we are monitoring his oxygen we are also watching his heart rate. Dr. Ben and I decided to have the lowest heart rate at 100 bmp, well that obviously wasn't low enough. Max was going to about 95 bmp and the machine was going crazy. That thing is LOUD!!! Luckily, Max didn't wake up from it. It all worked out. Dr. Ben is trying to set up for someone to come out and change the perimeters and lower the volume since we are unable to change either one on our own.
We are so thrilled to be home. I still feel so much more rested even though I was up with the heart rate machine all night. I slept better inbetween beeps. Hopefully tonight goes even better with the PD and the heart rate.
Enjoy your work week and the beautiful weather!
WE'RE HOME!!!!
Max had his first treatment of peritoneal dialysis last night and everything went flawless. I was a nervous wreck getting everything ready and hooking him up. You would've thought that I had never done it before. Needless to say the house is a complete disaster. We got home around 3:00, dropped everything in the living room, got Max down for a nap, met with a respiratory therapist so that she could bring out our oxygen supplies and teach us how to use them, run out to my mom and dad's to get all of the supplies, get a cart to put the machine on, eat dinner, try to enjoy a moment of being home, find all of the things that we needed before we started, get the machine hooked up and ready, hook Max up and try to clean up after all of that! Somehow we still got him hooked up a few minutes after 9pm. PHEW!
The machine was able to pull an extra 271mL off of Max last night. This is fantastic! The cycler didn't alarm once, but the pulse ox monitor did ALL night! While we are monitoring his oxygen we are also watching his heart rate. Dr. Ben and I decided to have the lowest heart rate at 100 bmp, well that obviously wasn't low enough. Max was going to about 95 bmp and the machine was going crazy. That thing is LOUD!!! Luckily, Max didn't wake up from it. It all worked out. Dr. Ben is trying to set up for someone to come out and change the perimeters and lower the volume since we are unable to change either one on our own.
We are so thrilled to be home. I still feel so much more rested even though I was up with the heart rate machine all night. I slept better inbetween beeps. Hopefully tonight goes even better with the PD and the heart rate.
Enjoy your work week and the beautiful weather!
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