Ladies and Gentlemen:
5.2! 5.2 is what Max's phosphorus was on Friday. This folks, is a NORMAL phosphorus. The doctors have been trying for oh about 4-5 months to get this particular level down. All I can say is SUCCESS! Between a couple of medication changes and a month of peritoneal dialysis we have SUCCESS! They rechecked it this morning and it went up to 7.9, but that is awesome considering we went the entire weekend without hemo. Needless to say, Dr. Ben and Dr. Dixon are VERY happy about his levels.
So, the plan for this evening is to go up 10mL's on his PD fluid. The increase is small, but this is a step in the right direction. We have to get his volume up so that we can get him off of his hemo. If all goes well, the overall plan is to go up by 10mL once a week. They will then do a saturation test in 2 weeks to see what his oxygen saturation levels are overnight while he is sleeping and on PD. This along with Tim and I watching how he is doing from a breathing standpoint will determine how he is doing with the volume increases. They will do this saturation test every 2weeks. I am definitely not expecting him to have any trouble with this 10mL increase.
Dr. Dixon feels that Max is doing great with the PD and is VERY happy with how everything is going. With that said, he feels that the transplant may be more of a long term goal, meaning waiting a couple of years rather than a year. We are good with that. Whatever it takes to make the transplant more of a success for Max.
Long term plan is that they continue to increase his PD fluid and slowly wean him off of his hemo. This months plan is to reassess him at the end of July and if all of his levels are good and he is tolerating his PD, they will drop his Wednesday hemo treatment. YAH!!! So at this point we are officially only going to the hospital 3 days a week.
We are definitely feeling some relief that the PD is working and that Max is tolerating it beautifully. He has been keeping his oxygen saturation anywhere from 93 in a deep sleep to 99 awake. We couldn't be happier at this point. I have been telling everyone that Max is doing better than he ever has. Of course I have to make sure that there is wood that I can knock on when I say that.
Sorry for the delay in this exciting news. It was a crazy weekend. Tim got called into work on Friday morning at 3am and we just saw him for the first time Sunday morning when he got up at 11:15am. He came home sometime very early Saturday morning, but Max and I were sleeping when he came and we were still sleeping when he left again. Max and I had a busy day on Saturday with our first big grill out at a friends river camp to celebrate my cousin college graduation. What a blast! It was extremely hot, but we got a fan and blew it right on Max, he fell asleep and woke up a ham bone. We were a little late getting home on PD, but it was worth it. We both needed it.
We are planning another big grill out with our friends Rick and Allie's family at her dad's farm for Fourth of July. Can't wait for the hay ride and firework display! Max's first Fourth at home!
Enjoy your holiday weekend everyone!!!
PS: Tim just got off of the phone with my cousin Chris (Tessa's daddy). They had there appointment with Dr. Sheldon today and they are just going to keep an eye on Tessa's bladder. They are going to do monthly ultrasounds to see how things are progressing. Thank you for all of you prayers. I am sure that Chris and Jessica greatly appreciate them as well.
June 29, 2009
June 24, 2009
Tessa Needs some Prayers
I know that this blog is for Max, but I feel that it's very important to not only ask for all of you to pray for us, but for those around us that need them as well.
Little Tessa needs all of you prayer warriors to pray for her. She went in for some tests on Tuesday and they showed that her bladder is larger than normal and that it's oddly shaped. She isn't peeing as much as she should be. They also found a cyst on her spine, which at this point, they aren't too concerned about. I don't know much about the news they got today, but something to do with her intestines not functioning properly. She is also not pooping as much as she should be. They have an appointment on Monday with I believe Dr. Sheldon. This is the urologist that is working with Max.
I plan to call Jessica tomorrow to get a little more information from her and to see if there is anything that we can do. What we need ALL of you to do is to pray that all of this ends up being very minor.
I am having a very hard time dealing with all of this news. It is tearing me apart to think that another family, especially a family who we are so close to, is going through something like this. It's not fair to be living, what's suppose to be the happiest time of your life, in fear. Bringing your first born child home isn't suppose to include going to Children's Hospital to have tests done to figure out what is going on with him or her. It's not fair to have to spend your maternity leave going to numerous doctor visits. All of this is bringing back our first few weeks of Max's life. The fear, the tears, the heartache. It's not fair.
Chris and Jessica, we love you and we are here for all of you. We are praying that all of this passes through quickly and as painless as possible. Tessa is beautiful and very lucky to have the two of you as her parents. I am not going to sit here and tell you not to worry, because it's impossible not to do. It's what parents do. You will worry (a little) about her for the rest of your lives. What I will sit here and tell you is to enjoy her, love her and cherish her.
I have to get this off of my chest. I have been wanting to say it for a very long time, but have kept my mouth shut. I think it's important to make everyone realize how precious life is- even the very small things. Please! Please, remind yourselves every day that things could be a whole lot worse. When something as small as someone cutting you off on your way to work ticks you off, remember that someone else in this world has something much worse happening to them. Maybe that person who cut you off is on their way to the hospital because they just got a phone call that their child or parent has taken a turn for the worse. CHERISH the tiniest of things that your loved ones do. I was jumping for joy and had tears in my eyes the other day because Max had snot and spit! Snot and Spit people! He has lived his life so dry from his hemo dialysis that we have never seen him have snot dripping out of his nose. He does now! When Max whines at me because I am not sitting right next to him playing. I CHERISH that. Think of all of the TINY things that your children do for you. Their smiles, laughs, screams, crys, tears... SNOT!
I have been told so many times, "At least you didn't have to deal with the middle of the night feeds with Max." Do you have any idea how much I would have killed to have those middle of the night feeds? Instead I was waking up and calling 513-636-4466 to check on my son. A number that I will have embedded in my head forever. I couldn't just walk into his room and pick him up to comfort him when he cried. Instead a nurse did that for me. I couldn't nurse my child because he had a breathing tube down his throat or because he didn't know how to. Instead I had to pump my milk so that his nurse could give it to him through a tube in his nose. I couldn't walk more than two feet from my son's bed because he was hooked up to monitors and machines. My son was five and a half months old before I could walk around with him. I don't have those first hospital pictures of my son. I don't have "Baby's first foot prints" of my son. The first time I saw my son was when he had a breathing tube down his throat and was in the NICU. The first time I got to hold my son was at Children's Hospital when he was three days old. It took three people to get him out of bed so that I could hold him. We can't stay out later than 9:00 on the weekends because we have to come home to hook our son up to a machine.
But, I wake up every day and tell myself that things could be a lot worse. There is another family out there who is going through much worse than what we are. The bald little boy that I saw running down the hall riding his IV pole like a scooter the other day makes me realize this. The bald two year old little girl that I saw holding the hand of her daddy (pushing an IV pole) while they look a stroll down the halls of the hospital makes me realize this. The other kids that I spend my Mondays, Wednesdays and Fridays with at dialysis make me realize this. The little girl that I saw in the urology clinic last week that had two prosthetic legs and was WALKING brings be hope. Running into the surgeon who saved my son's life by performing an open fetal surgery in the cafeteria brings me joy. Seeing in the halls the doctors, nurses, respiratory therapists, radiology techs, social workers, lactation consultants, physical and speech therapists, the cafeteria lady, etc. All of these people have gotten us through this tough journey, seeing them brings be happiness. I make it a point to smile at least once a day.
I may live my life in fear and worry, but I live it with a smile on my face and the mindset that things could be a lot worse. My son is alive and doing well, I am married to the greatest guy I know. I have a loving and supportive family and group of friends. I have a PERFECT kidney that I will soon give to my son to improve his lifestyle. I have a roof over my head and food on my table. What else do I need? A healthy child? It would be great, but giving birth to a healthy child would mean that we wouldn't have Max and Max is what makes our lives worth living.
Life is too short to worry about the "tough" times or the "bad" days.
CHERISH your lives! CHERISH your family and friends. CHERISH the tiniest things!
June 22, 2009
Welcome to the World
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.
I will post a picture as soon as I get one.
Thank you for all of your prayers.
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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