I will do a more detailed update on Monday, but the biopsy results are in and they show an improvement from his first biopsy.
More details to come.
Happy Halloween!
October 30, 2010
October 26, 2010
I was incorrect on the last post when I said that the antibody that was attacking Max's kidney was gone. We actually had not done that test yes at the time of that post. We are now waiting for the results of those labs that were drawn on Friday.
So Max had his fourth and final IVIG infusion on Friday. The infusion itself went very well, but Max's white blood cell count was extremely low (his was 500 when it's suppose to be 1,500-8,000). Yeah really low, so the doctors ordered for him to get a dose of neupogen which is a medication to increase white blood cells. They also checked his labs for a few viruses that could have been causing the rise- all of which came back negative.
Having a white cell count of 500 meant that Max was more susceptible to infection, so we were told to keep him in for the weekend to protect him from getting sick. So we spent the beautiful weekend inside the house.
Monday we went to have repeat labs drawn to make sure his white count took to the dose of neupogen. It did- his count went up to 3,000. Unfortunately, that was the only good news that we got from those labs. Max's creatinine has gone back up to .5.
What dose this mean? It could mean a few things- Max is still in rejection or Max's Prograf dose (anti-rejection medication) is so high that it's causing the rise in his creatinine. The only way to find out what's causing the rise is to go in for another biopsy.
It never gets easy to sit hear and wait for that phone to ring. You're waiting to hear the results of your child's tests or waiting to see what the panel suggests we do next. Suddenly the phone rings and the caller ID says Cincinnati Children's 513-636-0000. My heart drops to my stomach while I wait to hear what Dr. Ben has to say. Today, Dr. Ben told me that everyone thinks that we need to move forward with getting another biopsy.
So, on Thursday at 9:30am, Max will be going in for his 2nd biopsy of the kidney. We should have preliminary results sometime Thursday afternoon/early evening.
I am not going to lie- I am scared. I don't know how much more I can handle. All Tim and I want is a little bit of normalcy, and it's not looking like we are going to get it anytime soon. My dad told me today that our lives are never going to be "normal." He's absolutely right.
Despite the reality of what our normal is, our hearts are hurting. I think we got our hopes up that after the transplant life would be exactly how we wanted it to be. Max would be healthy and things would go swimmingly with the new kidney. It was a perfect match after all. I need to stop getting my hopes up so high- maybe life wouldn't be so disappointing.
So Max had his fourth and final IVIG infusion on Friday. The infusion itself went very well, but Max's white blood cell count was extremely low (his was 500 when it's suppose to be 1,500-8,000). Yeah really low, so the doctors ordered for him to get a dose of neupogen which is a medication to increase white blood cells. They also checked his labs for a few viruses that could have been causing the rise- all of which came back negative.
Having a white cell count of 500 meant that Max was more susceptible to infection, so we were told to keep him in for the weekend to protect him from getting sick. So we spent the beautiful weekend inside the house.
Monday we went to have repeat labs drawn to make sure his white count took to the dose of neupogen. It did- his count went up to 3,000. Unfortunately, that was the only good news that we got from those labs. Max's creatinine has gone back up to .5.
What dose this mean? It could mean a few things- Max is still in rejection or Max's Prograf dose (anti-rejection medication) is so high that it's causing the rise in his creatinine. The only way to find out what's causing the rise is to go in for another biopsy.
It never gets easy to sit hear and wait for that phone to ring. You're waiting to hear the results of your child's tests or waiting to see what the panel suggests we do next. Suddenly the phone rings and the caller ID says Cincinnati Children's 513-636-0000. My heart drops to my stomach while I wait to hear what Dr. Ben has to say. Today, Dr. Ben told me that everyone thinks that we need to move forward with getting another biopsy.
So, on Thursday at 9:30am, Max will be going in for his 2nd biopsy of the kidney. We should have preliminary results sometime Thursday afternoon/early evening.
I am not going to lie- I am scared. I don't know how much more I can handle. All Tim and I want is a little bit of normalcy, and it's not looking like we are going to get it anytime soon. My dad told me today that our lives are never going to be "normal." He's absolutely right.
Despite the reality of what our normal is, our hearts are hurting. I think we got our hopes up that after the transplant life would be exactly how we wanted it to be. Max would be healthy and things would go swimmingly with the new kidney. It was a perfect match after all. I need to stop getting my hopes up so high- maybe life wouldn't be so disappointing.
October 20, 2010
Life is Good.
We got word yesterday that the antibody that was attacking Max's kidney is now gone. It could reappear in a few months, but we will keep a close eye on it. To be honest, that really is the only new piece of information that we have. His creatinine is stable at .4. Everyone is still happy with it since it hasn't gone up. We have increased Max's Cellcept which is one of his antirejection medications, so it is possible that his creatinine could show a decrease in his labs on Friday.
Speaking of Friday, Max's forth and final IVIG infusion is at 9am this Friday morning. He has done very well with each infusion. We are hoping that this is the final treatment regimen that he needs to nip this rejection in the bum. Please pray that this is the end of this bump in the road.
Other than that, I will let these two videos tell you what else is going on in the life of Max. The first one is of him and his slap happiness after a 6 hour day in a hospital bed hooked up to an IV without a nap. It's very contagious so watchout :) The second video is just a little something new that our little man is doing. Hint: a new pair of braces + a new walker = success!
Speaking of Friday, Max's forth and final IVIG infusion is at 9am this Friday morning. He has done very well with each infusion. We are hoping that this is the final treatment regimen that he needs to nip this rejection in the bum. Please pray that this is the end of this bump in the road.
Other than that, I will let these two videos tell you what else is going on in the life of Max. The first one is of him and his slap happiness after a 6 hour day in a hospital bed hooked up to an IV without a nap. It's very contagious so watchout :) The second video is just a little something new that our little man is doing. Hint: a new pair of braces + a new walker = success!
October 9, 2010
Cincinnati Walks for Kids
One week from today, Team Mighty Max will be walking in the Cincinnati Walks for Kids that benefits Cincinnati Children's Hospital. We are asking for sponsors and/or people who would like to join us on the one or three mile walk. You can click on the link below to get more information about the event.
Cincinnati Walks for Kids
The walk is being held at Coney Island on Saturday, October 16. Registration begins at 8:30am and the walk begins at 10am with an opening cermony. There will be a complimentary lunch for all walkers along with games, rides and crafts for the kids until 1pm.
There is not a registration fee, but each walker is asked to raise at least $25. Any walker who raises $25 or more will receive a Cincinnati Walks for Kids T-shirt.
If you or anyone you know are interested in walking or sponsoring Team Mighty Max, please follow the link above to get started. All of the money that our team raises will be donated to the dialysis unit at CCHMC.
Please help us make our first year a huge success!
Cincinnati Walks for Kids
The walk is being held at Coney Island on Saturday, October 16. Registration begins at 8:30am and the walk begins at 10am with an opening cermony. There will be a complimentary lunch for all walkers along with games, rides and crafts for the kids until 1pm.
There is not a registration fee, but each walker is asked to raise at least $25. Any walker who raises $25 or more will receive a Cincinnati Walks for Kids T-shirt.
If you or anyone you know are interested in walking or sponsoring Team Mighty Max, please follow the link above to get started. All of the money that our team raises will be donated to the dialysis unit at CCHMC.
Please help us make our first year a huge success!
October 8, 2010
It's going to be a VERY long day
So we were told that Max would only need one dose of the IVIG that he received last week, but plans have changed. We are sitting here at CCHMC waiting for the VAT team to put an IV in so that Max can get his second out of four infusions on the IVIG. Yeah, we have to do this two more times.
We also found out that the antibody that is attacking Max's kidney is rare/new. Rare/new enough that they don't even test for it in the pre transplant labs. So on top of the 4-6 hour IVIG infusion, Max will be getting another medication called Rituxan that takes another 4 hours to infuse. 10 hours of infusion plus the 2 hours of waiting for an IV and the hour that we have to wait after the infusion ends before we can get discharged equals a very long and tiring day for both Max and I.
At this point in the post, Max has his IV and has started the Rituxan infusion. We waiting an hour and forty five minutes for the VAT team and it took 45 minutes to get the IV in and secured. Thankfully, they were able to get it in on the first stick but with the complete and utter breakdown that Max had, he was sweating bullets and they couldn't get it taped down. They started the med right away and the pump kept alarming so they had to switch pumps. Finally, at 10:30am, things are going smoothly- two and a half hours after we got here for our 8am appointment.
one half hour down...
We also found out that the antibody that is attacking Max's kidney is rare/new. Rare/new enough that they don't even test for it in the pre transplant labs. So on top of the 4-6 hour IVIG infusion, Max will be getting another medication called Rituxan that takes another 4 hours to infuse. 10 hours of infusion plus the 2 hours of waiting for an IV and the hour that we have to wait after the infusion ends before we can get discharged equals a very long and tiring day for both Max and I.
At this point in the post, Max has his IV and has started the Rituxan infusion. We waiting an hour and forty five minutes for the VAT team and it took 45 minutes to get the IV in and secured. Thankfully, they were able to get it in on the first stick but with the complete and utter breakdown that Max had, he was sweating bullets and they couldn't get it taped down. They started the med right away and the pump kept alarming so they had to switch pumps. Finally, at 10:30am, things are going smoothly- two and a half hours after we got here for our 8am appointment.
one half hour down...
October 4, 2010
Max got discharged on Saturday evening just like planned. We did end up getting one more test result Friday night that we were hoping not to get. Max's body is creating antibodies against the kidney. So not only does he have the cellular rejection that we found out about on Thursday, he also has this antibody rejection.
Saturday morning Max was hooked up to his steriod and another medication called IVIG. The doctors feel that one dose of the new med should take care of the antibody rejection. I believe the plan is to get another biopsy in 2-3 weeks to make sure that there is not any more rejection in the kidney.
Max was very glad to be home (and so were his mom and dad). We learned that something as little as a cold could put these kiddos into rejection since their immune systems go into overdrive to rid of the illness it tries to get rid of everything- including the foreign kidney. With that said, Max has become a hermit. Tim and I have decided not to take him out at least until we make sure that this rejection is gone, possibly through flu season. Yes, we may be going over board, but this rejection thing is not something to take lightly and to be honest it was the worst piece of information we have ever received. I still think we will take him Trick or Treating and to the Pumpkin Patch since both are held outdoors, but other than that, the poor little man is "tuck" inside the house.
We will be heading in for repeat labs and a follow up visit, so please continue to keep him in your prayers. We need that creatinine to stay at .3 or lower. We are not out of the woods just yet- heck we will never be out of the woods now that I think about it.
Prayers are greatly appreciated.
Saturday morning Max was hooked up to his steriod and another medication called IVIG. The doctors feel that one dose of the new med should take care of the antibody rejection. I believe the plan is to get another biopsy in 2-3 weeks to make sure that there is not any more rejection in the kidney.
Max was very glad to be home (and so were his mom and dad). We learned that something as little as a cold could put these kiddos into rejection since their immune systems go into overdrive to rid of the illness it tries to get rid of everything- including the foreign kidney. With that said, Max has become a hermit. Tim and I have decided not to take him out at least until we make sure that this rejection is gone, possibly through flu season. Yes, we may be going over board, but this rejection thing is not something to take lightly and to be honest it was the worst piece of information we have ever received. I still think we will take him Trick or Treating and to the Pumpkin Patch since both are held outdoors, but other than that, the poor little man is "tuck" inside the house.
We will be heading in for repeat labs and a follow up visit, so please continue to keep him in your prayers. We need that creatinine to stay at .3 or lower. We are not out of the woods just yet- heck we will never be out of the woods now that I think about it.
Prayers are greatly appreciated.
September 30, 2010
Results: Rejection
Definition of Rejection:
Something rejected as imperfect, unsatisfactory, or useless
What Max's body doesn't know is that this kidney is perfect. This kidney is what his body needs. This kidney is the most useful thing that his body has seen in 2 1/2years. So why is his body rejecting this perfect and purposeful kidney? We are all still searching for the answer. Whether it be searching spiritually or medically, we are all still searching.
Dr. Brad walked through that door and I knew something was wrong because he didn't have the smile on his face like he does every other time he walks through that door. Then we heard it. The biopsy showed that Max is rejecting the kidney. My heart sunk and Tim sat back in his chair. I was numb. He proceeded to tell us that there are three stages of rejection: 1 being mild, 2 being moderate and 3 being severe. Max is at stage 2. I stopped breathing. Tim reached up and grabbed my hand: a reminder that I wasn't alone. Dr. Brad drew us a picture and spoke about what he was drawing. I don't remember a word of what he said. I heard the word rejection and I shut down. My worst fear was now a reality. Max's body is rejecting this absolutely perfect kidney just a short 3 months after he got it. This perfect kidney, that we didn't have to go looking for, was at risk of failing. Dialysis immediately popped in my head. I just got rid of all that crap- were we going to need it again? We are just now getting used to this new found freedom and now it was gone.
Then I heard it. It's reversible. What?!? I slowly started coming back to what he was saying. He told us that we weren't getting out of here tonight because they were going to put Max on a 3 day course of high dose steriods to try to reverse the rejection. I then asked, what if that doesn't work? Then there is another option. Max will have to have a PICC line placed so that he can get 10-14 days of stronger medication. That will result in a 10-14 day hospital stay or just a few days stay and us coming in every day for the infusion. With this he will have to be put on strong antibiotics because it will wipe his immune system out again. (Remember: I was kind of blanked out at this point so some of this may be wrong, but this is what I think I remember him saying). Dr. Brad seemed cautiously optimistic that the steriods will work. He didn't go into full details about option #2 because he doesn't think we will need it. Fingers crossed that the steriods work.
Anyway, he continued to explain to us what the next couple of weeks are going to look like and it basically looks like this: needles, needles and more needles. Lots of blood draws to keep an eye on that creatinine. They need to see it coming down to know if they got all of the rejection out of there. If it doesn't then Max will be heading back in for another biopsy. If that still shows signs of rejection, then we go to that second option that I explained above.
We were also able to successfully have a test done that they have been contemplating doing now since he got the kidney that tells us exactly how much Prograf Max actually needs. They hesitated doing it because it requires 4 blood draws at 4 different times and they didn't want to put him through that. Since he has an IV from the procedure they went ahead and drew from that today and were able to get all 4 of the blood draws without any sticks.
So hopefully between the biopsy and the kinetics blood testing they will be able to figure out what Max needs to keep this kidney happy.
We have been told over and over and over again that the chance of Max rejecting this perfect, 12 out of 12 matched kidney is so very low. All I have to say is that the CCHMC Nephrology staff just got one hell of a case study. I guess we just proved that it doesn't really matter if you are a 1 out of 6 match, a 6 out of 6 match or a 12 out of 12 match.
Needless to say, my faith is shot and I don't think Tim ever got his back since all of this began so we are counting on you. We need you. Please lift us up in prayer. We have seen miracles happen, but after having been through what we have been through you really start to wonder. Was it a medical miracle or a miracle of God?
We are down on our knees begging for this steriod treatment to work. Please keep Max in your prayers. I have a feeling we are going to be hearing a lot of "I tuck" tomorrow considering he is stuck in this God forsaken room until at least Saturday.
Please, oh please let the steroids work.
Something rejected as imperfect, unsatisfactory, or useless
What Max's body doesn't know is that this kidney is perfect. This kidney is what his body needs. This kidney is the most useful thing that his body has seen in 2 1/2years. So why is his body rejecting this perfect and purposeful kidney? We are all still searching for the answer. Whether it be searching spiritually or medically, we are all still searching.
Dr. Brad walked through that door and I knew something was wrong because he didn't have the smile on his face like he does every other time he walks through that door. Then we heard it. The biopsy showed that Max is rejecting the kidney. My heart sunk and Tim sat back in his chair. I was numb. He proceeded to tell us that there are three stages of rejection: 1 being mild, 2 being moderate and 3 being severe. Max is at stage 2. I stopped breathing. Tim reached up and grabbed my hand: a reminder that I wasn't alone. Dr. Brad drew us a picture and spoke about what he was drawing. I don't remember a word of what he said. I heard the word rejection and I shut down. My worst fear was now a reality. Max's body is rejecting this absolutely perfect kidney just a short 3 months after he got it. This perfect kidney, that we didn't have to go looking for, was at risk of failing. Dialysis immediately popped in my head. I just got rid of all that crap- were we going to need it again? We are just now getting used to this new found freedom and now it was gone.
Then I heard it. It's reversible. What?!? I slowly started coming back to what he was saying. He told us that we weren't getting out of here tonight because they were going to put Max on a 3 day course of high dose steriods to try to reverse the rejection. I then asked, what if that doesn't work? Then there is another option. Max will have to have a PICC line placed so that he can get 10-14 days of stronger medication. That will result in a 10-14 day hospital stay or just a few days stay and us coming in every day for the infusion. With this he will have to be put on strong antibiotics because it will wipe his immune system out again. (Remember: I was kind of blanked out at this point so some of this may be wrong, but this is what I think I remember him saying). Dr. Brad seemed cautiously optimistic that the steriods will work. He didn't go into full details about option #2 because he doesn't think we will need it. Fingers crossed that the steriods work.
Anyway, he continued to explain to us what the next couple of weeks are going to look like and it basically looks like this: needles, needles and more needles. Lots of blood draws to keep an eye on that creatinine. They need to see it coming down to know if they got all of the rejection out of there. If it doesn't then Max will be heading back in for another biopsy. If that still shows signs of rejection, then we go to that second option that I explained above.
We were also able to successfully have a test done that they have been contemplating doing now since he got the kidney that tells us exactly how much Prograf Max actually needs. They hesitated doing it because it requires 4 blood draws at 4 different times and they didn't want to put him through that. Since he has an IV from the procedure they went ahead and drew from that today and were able to get all 4 of the blood draws without any sticks.
So hopefully between the biopsy and the kinetics blood testing they will be able to figure out what Max needs to keep this kidney happy.
We have been told over and over and over again that the chance of Max rejecting this perfect, 12 out of 12 matched kidney is so very low. All I have to say is that the CCHMC Nephrology staff just got one hell of a case study. I guess we just proved that it doesn't really matter if you are a 1 out of 6 match, a 6 out of 6 match or a 12 out of 12 match.
Needless to say, my faith is shot and I don't think Tim ever got his back since all of this began so we are counting on you. We need you. Please lift us up in prayer. We have seen miracles happen, but after having been through what we have been through you really start to wonder. Was it a medical miracle or a miracle of God?
We are down on our knees begging for this steriod treatment to work. Please keep Max in your prayers. I have a feeling we are going to be hearing a lot of "I tuck" tomorrow considering he is stuck in this God forsaken room until at least Saturday.
Please, oh please let the steroids work.
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