...you realize someone else has it so much worse. I ask that you all please pray for this family. They just lost their baby girl to cancer just over a week ago. If you have the time, read her story from the very beginning. She was a beautiful healthy little girl and within three weeks cancer took her from her family.
http://themcclenahans.blogspot.com
I ask that you PLEASE keep this family in your prayers that God gives them the strength to move forward with their lives without their sweet daughter, Cora. Also pray that they find peace that she is resting with our Heavenly Father.
Rest in Peace sweet baby girl.
February 17, 2009
Max is having surgery on Thursday
A dye study done yesterday determined that Max's dialysis catheter needs to be replaced. There is a piece of fibrin floating around on the outside of the catheter that won't dissolve with the heparin and TPA that has been tried. So, surgery #10 is sooner than we had hoped. So, Thursday morning at 10:30am Max will be back in surgery. I haven't heard any news yet, but it looks like it will be an outpatient procedure. They will keep him to observe and discharge him that evening. This is how they did it the last time, so I assume it will be the same. I will let you all know as soon as I get more details.
Again, keep him in your prayers that it's as simple as it should be and that he does well and recovers quickly.
Thanks everyone.
I cannot wait until his transplant :o(
Again, keep him in your prayers that it's as simple as it should be and that he does well and recovers quickly.
Thanks everyone.
I cannot wait until his transplant :o(
February 13, 2009
Today is...
...Max's first first birthday!!! Have you figured that one out yet?
Today is the one year anniversary of the open fetal surgery that Max and I had last year. What a celebration to think that he and I both made it through it and are doing fantastic. I can't believe it's been a year and I never would have thought we would be where we are today.
We are truly blessed to have such a great hospital with great doctors right across the river from us. What a journey!
Happy First First Birthday to our little miracle! We love you Max!
Happy Valentine's Day to all of you. Have a great weekend.
Note: I am scheduled to have my CT angiogram on March, 25. This is a test where they will put an IV in my arm and inject a dye to make sure I have 2 kidneys and to check the blood supply that goes to each one. This test will determine if I truly am a good candidate for Max's transplant.
Today is the one year anniversary of the open fetal surgery that Max and I had last year. What a celebration to think that he and I both made it through it and are doing fantastic. I can't believe it's been a year and I never would have thought we would be where we are today.
We are truly blessed to have such a great hospital with great doctors right across the river from us. What a journey!
Happy First First Birthday to our little miracle! We love you Max!
Happy Valentine's Day to all of you. Have a great weekend.
Note: I am scheduled to have my CT angiogram on March, 25. This is a test where they will put an IV in my arm and inject a dye to make sure I have 2 kidneys and to check the blood supply that goes to each one. This test will determine if I truly am a good candidate for Max's transplant.
February 12, 2009
Max's Benefit
Just a note: I posted information about Max's Benefit in the sidebar to the right. If you have any questions let me know. You can email me at mommy2max08@yahoo.com.
We hope to see all of you there.
We hope to see all of you there.
February 11, 2009
God is testing me
Well the dear Lord must have thought that we had our routine down and that things were getting to easy for us, because he testing my super mom strength this morning. Here's my story.
Max's feeding pump went off at 7:10 this morning, as it does every morning. I got out of bed while I was still half asleep, as I do every morning. But this morning was different. When I stepped out of bed I realized that my left foot was not working, it was asleep and it didn't want to move. I made myself put pressure on it and as I did so my ankle rolled and I heard a crack. Remember, I am still mostly asleep through all of this. I remember thinking, "wow, that didn't sound good." I continued on without any pain. I turned his pump off and then started to realize that my foot was actually kind of hurting so I went and got some ice and went back to bed. As I was laying in bed and started to wake up even more and realize that I was really in some pain. When I took my sock off and looked at my foot, there was a knot on the side of it. Of course the first thing I think of is that I broke it. I called Tim and told him, but I kept it on ice and fell back asleep. When I got up at 9:00 I couldn't put any weight on it and it was HUGE! I got up and hopped on one foot to the phone to call my mom. I think that conversation went something like this:
Me: "Hey mom, what are your plans for the day?
Mom: "Nothing, why?"
Me: "I think I broke my foot and I am going to need some help taking Max to dialysis
and then me to the ER for an xray."
Mom: "Oh Beth."
So needless to say, Tim was able to leave work to take Max to dialysis and my mom took me to St. Elizabeth for an xray. So as I hobbled around the house the more nauseous I got from the pain. We got to the hospital and got the xray. Sure enough I have a hairline fracture on the side of my foot. They have me in a partial cast and on crutches until I see the orthopedic tomorrow. He will then decide on what he wants to do with it. You got it folks. I am on crutches and have to somehow take care of my 9 month old while my husband is out trying to get everyone's power back on as we have another wind storm. FANTASTIC! Thank goodness for parents and inlaws.
My mom and I went to Children's to sit with Max so that Tim could go back to work and when we got there Tim told me that we were going back to radiology to get an xray of Max's hemo cath. It has been very temperamental and not wanting to work properly that past week. One day it works the next it totally shuts down. Well it ran perfectly for an hour today then stopped. The xray showed that the placement was fine. So, we have no idea what's causing it, but I am holding on to hope that it will last until his next surgery before we have to replace it. But, they have contacted the surgeon to see what he would like to do. There is also a cuff right under the skin on the catheter that is there to help hold it in. That cuff is now exposed. Some are thinking that it's possibly him growing but some aren't too convinced. We're not too sure yet, so we'll see.
On a positive note, the nephrologists and transplant nurse met with the urologist today and had a little pow wow about Max. The urologist told them that he wants the donor (me) to get moving on the further testing because he feels that even if he does need the bladder reconstruction that transplant can take place 3-4 months after this next surgery. So, that means that the transplant could happen as early as July or August. WOO HOO!!! So for me, the next step is the CT angiogram. The transplant nurse is going to try to get this scheduled for next Wednesday. This test will let them know whether not I have 2 kidneys and how much blood supply is going to them. This information will let them know whether I can truly give Max my kidney. There is a chance that they could find something that would enable to to do so. Say a prayer that all goes well with it and we get good results.
I think that's it. I am going to head off here and relax from the crazy day of xrays, broken bones, a cast and poor catheters. Phew, it's exhausting just thinking about it. Have a great evening everyone!
Max's feeding pump went off at 7:10 this morning, as it does every morning. I got out of bed while I was still half asleep, as I do every morning. But this morning was different. When I stepped out of bed I realized that my left foot was not working, it was asleep and it didn't want to move. I made myself put pressure on it and as I did so my ankle rolled and I heard a crack. Remember, I am still mostly asleep through all of this. I remember thinking, "wow, that didn't sound good." I continued on without any pain. I turned his pump off and then started to realize that my foot was actually kind of hurting so I went and got some ice and went back to bed. As I was laying in bed and started to wake up even more and realize that I was really in some pain. When I took my sock off and looked at my foot, there was a knot on the side of it. Of course the first thing I think of is that I broke it. I called Tim and told him, but I kept it on ice and fell back asleep. When I got up at 9:00 I couldn't put any weight on it and it was HUGE! I got up and hopped on one foot to the phone to call my mom. I think that conversation went something like this:
Me: "Hey mom, what are your plans for the day?
Mom: "Nothing, why?"
Me: "I think I broke my foot and I am going to need some help taking Max to dialysis
and then me to the ER for an xray."
Mom: "Oh Beth."
So needless to say, Tim was able to leave work to take Max to dialysis and my mom took me to St. Elizabeth for an xray. So as I hobbled around the house the more nauseous I got from the pain. We got to the hospital and got the xray. Sure enough I have a hairline fracture on the side of my foot. They have me in a partial cast and on crutches until I see the orthopedic tomorrow. He will then decide on what he wants to do with it. You got it folks. I am on crutches and have to somehow take care of my 9 month old while my husband is out trying to get everyone's power back on as we have another wind storm. FANTASTIC! Thank goodness for parents and inlaws.
My mom and I went to Children's to sit with Max so that Tim could go back to work and when we got there Tim told me that we were going back to radiology to get an xray of Max's hemo cath. It has been very temperamental and not wanting to work properly that past week. One day it works the next it totally shuts down. Well it ran perfectly for an hour today then stopped. The xray showed that the placement was fine. So, we have no idea what's causing it, but I am holding on to hope that it will last until his next surgery before we have to replace it. But, they have contacted the surgeon to see what he would like to do. There is also a cuff right under the skin on the catheter that is there to help hold it in. That cuff is now exposed. Some are thinking that it's possibly him growing but some aren't too convinced. We're not too sure yet, so we'll see.
On a positive note, the nephrologists and transplant nurse met with the urologist today and had a little pow wow about Max. The urologist told them that he wants the donor (me) to get moving on the further testing because he feels that even if he does need the bladder reconstruction that transplant can take place 3-4 months after this next surgery. So, that means that the transplant could happen as early as July or August. WOO HOO!!! So for me, the next step is the CT angiogram. The transplant nurse is going to try to get this scheduled for next Wednesday. This test will let them know whether not I have 2 kidneys and how much blood supply is going to them. This information will let them know whether I can truly give Max my kidney. There is a chance that they could find something that would enable to to do so. Say a prayer that all goes well with it and we get good results.
I think that's it. I am going to head off here and relax from the crazy day of xrays, broken bones, a cast and poor catheters. Phew, it's exhausting just thinking about it. Have a great evening everyone!
February 9, 2009
No News is Good News
Sorry it has been awhile since I have posted anything. Just wanted to let everyone know that all is well here on our end.
Max continues to do great and will finally be starting his therapies tomorrow. We are looking forward to having him progress with his motor and oral skills. The hope is to have him eating by mouth and to get him sitting up and mobile.
He is (WOO HOO) finally on the charts for his head circumference. He is almost on there for height. His nutritionist thinks the next time she measures him (end of February) he will be in the 3-10 percentile. He just doesn't seem that small to me, but that's what the charts say.
We have a tentative surgery date of March 31st, but I may have already told you all that. We are waiting to hit the maximum dose of Ditropan before we have his second test to see how the bladder cycling as been going. The medication is made to stop his bladder from having spasms which would make him urinate. This way his bladder fills up with urine to (hopefully) stretch it how we want it. He still urinates, just not as much compared to when he wasn't on the medicine. Fingers are still crossed that this will work.
Sorry, it's a boring post. No offense, but that's how we like it. Have a great rest of the week and I will talk with all of you soon.
Max continues to do great and will finally be starting his therapies tomorrow. We are looking forward to having him progress with his motor and oral skills. The hope is to have him eating by mouth and to get him sitting up and mobile.
He is (WOO HOO) finally on the charts for his head circumference. He is almost on there for height. His nutritionist thinks the next time she measures him (end of February) he will be in the 3-10 percentile. He just doesn't seem that small to me, but that's what the charts say.
We have a tentative surgery date of March 31st, but I may have already told you all that. We are waiting to hit the maximum dose of Ditropan before we have his second test to see how the bladder cycling as been going. The medication is made to stop his bladder from having spasms which would make him urinate. This way his bladder fills up with urine to (hopefully) stretch it how we want it. He still urinates, just not as much compared to when he wasn't on the medicine. Fingers are still crossed that this will work.
Sorry, it's a boring post. No offense, but that's how we like it. Have a great rest of the week and I will talk with all of you soon.
January 28, 2009
One year ago today...
...we had an ultrasound that would change our lives forever. One year ago our lives were flipped upside down with the news that something was wrong with our unborn child. One year ago we found out that we were having a little boy.
That day still stands out in my mind as one of the worst days of my life. Tim and I both took off of work and had the plan of going to the ultrasound to find out what we were having, then going to lunch and to register at Babies-R-Us. Boy was that plan shot to hell and back. Once we heard the news, we drove home with without saying a word, just tears. We got home and then everyone started to call to hear whether the new addition was a boy or girl. Talk about the hardest thing in the world to tell people. If I recall correctly, it went something like this, "Well we're having a boy, but..." I think Tim and I told that same story 10 times that day. I finally got to the point were we told people to call our parents. I then sent out an email to inform the remaining family and friends.
The two weeks that followed January 28, 2008 were full of tears, doctors visits, tests, ultrasounds, 4 amniocenteses, an MRI, meetings with the medical team, decisions that no one should ever have to make, a physical, blood work and a major surgery that could change the outcome for our little boy. A lot of people would say that it was the hardest decision that they've ever had to make. To be honest, it was the easiest. When we were asked what we would like to do, I didn't even ask Tim. I just said let's do it. Thankfully, Tim agreed :o) Why would we allow our son to die if there was the possibility of saving his life. We had no idea what the outcome was going to be, but we were willing to face the worst if we had to, but we HAD to try. The doctors told us that the baby may not make it out of the surgery. If that were the case they would have delivered him and let us see him after surgery to say our goodbyes. As scary as it was to hear that, we didn't let it stop us.
A little over 2 weeks later, on February 13th, I underwent a surgery that has only taken place twice before in Cincinnati (I was the 3rd) and about 6 times nationwide. Surprisingly, I was relatively calm. I was more nervous about the IV than the surgery itself. After waiting a couple of ours I was wheeled to a holding room where I was given a sedative to keep me calm once I was in the OR. Everything was a blur once I got that. I remember kissing Tim and saying goodbye to both sets of our parents. I was then wheeled into the OR. I remember switching over to the table and leaning on a nurse to have my epidural put in. The room was spinning and I heard a lot of voices. I was then told that they were going to give me some oxygen. Well let's just say that that oxygen had something in it, because I don't remember anything after the nurse told me that. 4 hours later, I woke up in the recovery room with the nurses telling me that the baby's feet are very cute. I asked if everything went well and they said yes. Tim then came back to see me along with my mom a few minutes later. I then went back to my room and don't remember much until about 2 days later. I had an epidural, a catheter, was on magnesium, had a morphine pump, and was on several more meds that I don't remember. The only thing that I remember is that I was extremely hot and thirsty and they wouldn't give me anything but ice chips. For 2 days, I think, they wouldn't give me anything to drink and I was so hot and dry from that dang magnesium. I am convinced that the devil created that drug. Anyway, I finally got my sprite and water and I was very happy after that.
5 days later I went home to spend the remainder of my pregnancy on bedrest. It was then that we announced that our little boy, the boy who fought so hard to be alive was going to be named Max. A name that means "the greatest." Max is the greatest thing that has ever happened to us. It's hard to believe that it has been a year since we found out about his condition. Not knowing that we would be where we are today, we made a decision that put myself and our unborn child at risk, but not once have we ever looked back. We knew that if he survived we would be in it for the long haul. We knew before we made that life changing decision that he had kidney failure and would most likely end up on dialysis awaiting a kidney transplant. We knew he would be in the hospital for awhile (not quite 6 months though). We have had several unexpected surprises along the way, but we have never looked back.
My marriage to Tim has grown stronger than I ever thought possible. I truly believe that Max will be a much stronger man because of what he has gone through in his life. All of this happened for a reason and we have taken it head on and if you ask me, we have done one hell of a job.
Although I spend 3 days a week (Tim does the forth) at the hospital, I enjoy my time there with Max. We make the most of what we can while we are there. This is our life and to us it's the best life. We have learned a great deal about each other and about ourselves throughout this journey. We look forward to learning a lot more as our life progresses with our son, Max. "The greatest" decision that we have ever made.
That day still stands out in my mind as one of the worst days of my life. Tim and I both took off of work and had the plan of going to the ultrasound to find out what we were having, then going to lunch and to register at Babies-R-Us. Boy was that plan shot to hell and back. Once we heard the news, we drove home with without saying a word, just tears. We got home and then everyone started to call to hear whether the new addition was a boy or girl. Talk about the hardest thing in the world to tell people. If I recall correctly, it went something like this, "Well we're having a boy, but..." I think Tim and I told that same story 10 times that day. I finally got to the point were we told people to call our parents. I then sent out an email to inform the remaining family and friends.
The two weeks that followed January 28, 2008 were full of tears, doctors visits, tests, ultrasounds, 4 amniocenteses, an MRI, meetings with the medical team, decisions that no one should ever have to make, a physical, blood work and a major surgery that could change the outcome for our little boy. A lot of people would say that it was the hardest decision that they've ever had to make. To be honest, it was the easiest. When we were asked what we would like to do, I didn't even ask Tim. I just said let's do it. Thankfully, Tim agreed :o) Why would we allow our son to die if there was the possibility of saving his life. We had no idea what the outcome was going to be, but we were willing to face the worst if we had to, but we HAD to try. The doctors told us that the baby may not make it out of the surgery. If that were the case they would have delivered him and let us see him after surgery to say our goodbyes. As scary as it was to hear that, we didn't let it stop us.
A little over 2 weeks later, on February 13th, I underwent a surgery that has only taken place twice before in Cincinnati (I was the 3rd) and about 6 times nationwide. Surprisingly, I was relatively calm. I was more nervous about the IV than the surgery itself. After waiting a couple of ours I was wheeled to a holding room where I was given a sedative to keep me calm once I was in the OR. Everything was a blur once I got that. I remember kissing Tim and saying goodbye to both sets of our parents. I was then wheeled into the OR. I remember switching over to the table and leaning on a nurse to have my epidural put in. The room was spinning and I heard a lot of voices. I was then told that they were going to give me some oxygen. Well let's just say that that oxygen had something in it, because I don't remember anything after the nurse told me that. 4 hours later, I woke up in the recovery room with the nurses telling me that the baby's feet are very cute. I asked if everything went well and they said yes. Tim then came back to see me along with my mom a few minutes later. I then went back to my room and don't remember much until about 2 days later. I had an epidural, a catheter, was on magnesium, had a morphine pump, and was on several more meds that I don't remember. The only thing that I remember is that I was extremely hot and thirsty and they wouldn't give me anything but ice chips. For 2 days, I think, they wouldn't give me anything to drink and I was so hot and dry from that dang magnesium. I am convinced that the devil created that drug. Anyway, I finally got my sprite and water and I was very happy after that.
5 days later I went home to spend the remainder of my pregnancy on bedrest. It was then that we announced that our little boy, the boy who fought so hard to be alive was going to be named Max. A name that means "the greatest." Max is the greatest thing that has ever happened to us. It's hard to believe that it has been a year since we found out about his condition. Not knowing that we would be where we are today, we made a decision that put myself and our unborn child at risk, but not once have we ever looked back. We knew that if he survived we would be in it for the long haul. We knew before we made that life changing decision that he had kidney failure and would most likely end up on dialysis awaiting a kidney transplant. We knew he would be in the hospital for awhile (not quite 6 months though). We have had several unexpected surprises along the way, but we have never looked back.
My marriage to Tim has grown stronger than I ever thought possible. I truly believe that Max will be a much stronger man because of what he has gone through in his life. All of this happened for a reason and we have taken it head on and if you ask me, we have done one hell of a job.
Although I spend 3 days a week (Tim does the forth) at the hospital, I enjoy my time there with Max. We make the most of what we can while we are there. This is our life and to us it's the best life. We have learned a great deal about each other and about ourselves throughout this journey. We look forward to learning a lot more as our life progresses with our son, Max. "The greatest" decision that we have ever made.
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