October 30, 2010

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 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.

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!

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!

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...

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.