Q & A

Alright everyone. Here is the Q & A post.

Will Max have to be on dialysis after the transplant? This is a big fat NO. The reason for the transplant is to eliminate the dialysis from Max's life.

Why did they move the transplant up? Because it's better for Max's growth, development and overall health to transplant him rather than wait until he is 3. It may be a little riskier, but the surgeons are confident that they can do it at this point.

Is moving the transplant up a good thing? Yes and no. Yes for many reasons. It's better for Max, we can finally get off of dialysis, we can finally live somewhat of a "normal" life, etc etc etc. No because Max is still little. The risks are huge, but the doctors are on top of the risks which could potentially reduce them.

Will Max be cured after the transplant? No. There really isn't a cure of ESRD. Yes the transplant will make him a lot healthier, but a kidney doesn't last forever. The chances of him needing to go back on dialysis and needing another kidney at some point are inevitable. You also have to remember that Max will always have small lungs and a crappy bladder, so we'll always have those issues as well. But a transplant will improve his lifestyle.

How does Peritoneal Dialysis work? PD is a form of dialysis that involves putting a dialysate solution (basically sugar water) into the peritoneal cavity. This is the cavity that holds your intestines, stomach and liver. The fluid sits in this cavity and pulls the "yuck" out of the body's tissues. After a certain amount of time it drains into a bag and refills you with the prescribe fill volume. This goes on for however many cycles you are prescribed by your doctor. So Max's PD prescription is 12 hours with 6 cycles lasting 1 hour and 38 minutes each with a fill volume of 400mL.

How is Max's growth? The doctors and nutritionist are happy with his growth. He is definitely packing on the pounds, but it's in chunkiness rather than length. But, he is growing the recommended length which is obviously good. We definitely need him to start growing longer for easement of the transplant. According to Dr. Ben, "The surgeons like them long, not round." They just increased his growth hormone dose, so we are hoping that will start stretching him out a little more.

Where does Max fall on the growth chart? I have to kind of chuckle about this because to me he is HUGE, but for length Max isn't even on the charts. Not even in the 3 percentile. Upsetting, yes, but I don't dwell on it. For weight, Max is in the 25-50 percentile. All I can say is that I am glad for that. I can't even imagine having a 15 month old in the 75th percentile. I can barely hold him as it is at nearly 26 pounds.

Where does Max need to be for his procedures? I am assuming that this question is in reference to his next 2 surgeries, so that's how I am going to answer them. As far as the transplant goes, the minimum weight is 10 kilos (22 pounds). Max is almost 12 kilos (26 pounds). So from that standpoint he is good to go. With that said, 12 kilos is better than 10 kilos. 15 kilos is better than 12kilos and so on. So the bigger he is the better and easier it is to do the transplant. They would also like to see him stretch out a little so that they can be sure that the kidney will fit into his short little self.

The plan for the augmentation (bladder reconstruction) is to wait 6 months after the transplant. The reason for this is so that they can get him off of the steroids that he will be on post transplant. Ideally they like to do the augment before transplant, but in Max's case he is too small and it will eliminate the option of doing peritoneal dialysis because of the severity of the abdominal surgery. The fear of doing this the preferred way is that they won't be able to fit both a larger bladder and an adult size kidney into him and be able to close his belly.

How would doing the transplant before the augment make a difference as far as everything fitting into his belly goes? I added this question to make it all clear on why they want to transplant before they augment. After Max gets a transplant they are fully expecting him to have a growth spurt. Remember when I said that kids with kidney disease don't grow very well? Once Max has a perfectly functioning kidney he should grow like a normal child does. So he will have 6 months post transplant to grow before the augment. Also, remember that they kidney is the "smart" organ. Months after he gets my kidney, it will shrink to fit his body and then will regrow with him. They will also be removing his right kidney during the transplant surgery to allow more room for the new one.

That was a lot of information. Please don't hesitate to post any questions that you may have.

Moving on:

When can you give Max a baby brother or sister? They recommend that I wait 6 months to a year after the surgery before trying to get pregnant. The reason is so that my body can get used to only having one kidney and for recovery purposes. Also, depending on when Max's augmentation is will determine when we start trying. The augment is going to keep Max in the hospital for a month or so. Obviously, that is going to be a very stressful time for us to be thinking about another little one. So, if I had to guess we would start trying late 2010 or early 2011. We'll see. We've learned not to make too many plans :o)

How do you stay strong through all of this? We don't dwell on Max's condition. Most people view our life as being very stressful, full of medical supplies and appointments. We view our life as normal. If we get bad news, we give ourselves that day to dwell on the new information, but the next day we grab it by the horns and move on. If we focused on all of the bad news that we have gotten, Max wouldn't be here. We stay strong by focusing on the miracle of Max's life.

Could you refresh us with some simple definitions of some of the medical terms when they come up? I will most definitely do this. I will go over a few here as a reminder.

PD- Peritoneal Dialysis (fluid going into the belly)
Hemo- Hemo Dialysis (blood going through a machine)
bladder augmentation- enlarging the capacity of the bladder. This is done by placing an incision in the bladder and using stomach or intestine to "patch" the incision resulting in a larger bladder.

When is Tim going to post a comment? That is something you will have to ask him :o) I am going to teach him how to post when it comes time to transplant. This way you guys are all updated on how everything is going. Until then... I don't know.

I still get chills thinking about the sold out benefit, all the people, all the donations and the strong feeling of love. How did that experience touch your lives? In all honesty, I can't even describe how much the benefit has impacted our lives. The group of family and friends that put so much hard work and dedication into planning it, all of the people and companies that donated, the 776+ people that showed up that night to show their support. UNBELIEVABLE. I think that was the only word I said the entire night of the event and that's still my reaction. To be the only event (aside from funerals) to have ever sold hold that gym is unbelievable. To think that 776+ people came out to honor a little boy that most have never met is unbelievable. To see all of the donations for the silent auction, chance raffle and major prize was unbelievable. Watching the video and seeing all of the tears around that gym was unbelievable. Channel 5 News showing up and putting us on their Top 5 at 11 was unbelievable. The entire night was UNBELIEVABLE!

What did Max do today that made you smile? Max makes me smile just by smiling, but the one thing that he has just started doing is kissing. The wide open mouth coming right at you kind of kisses. It cracks me up. So this morning while I was talking to his speech therapist he did it like 10 times and wouldn't stop. I was laughing so doggone hard.

Share some of the most memorable moments you have had in this journey that you don't believe you would have had if Max was born without his condition. There are so many we could share. Some of them may not seem like something you would want to remember, but they are. Like being the 3rd person in Cincinnati to have an open fetal surgery to place a vesicostomy. Our 6 month stay in the RCNIC. I will personally cherish those memories and nurses forever in my heart.

One of my favorite things that has come from this journey is the bond that Max and Dr. Ben have created. Dr. Ben has been with Max since he was 2 months old and it's so neat to see them interact with each other. As soon as Max hears his voice in the unit he starts smiling and looking for him.

The friendships that we have created throughout the journey. The bonds that we have created with our family and friends. The time that I get to spend with Max at the hospital and here are home. Being able to be a stay at home mom.

Besides being chosen to be Max's mother, which I am so honored to have gotten this opportunity, my favorite moment of all times was getting that phone call telling me that I am a "perfect 6 out of 6 match" for Max's kidney donor. I hung up that phone and was unable to stop smiling. That is the coolest gift that a mother can do for her child. Not only did I have the chance to save my son's life once, but I get the opportunity to do it twice! Now that is cool!

I could write a novel on the most memorable moments we have had throughout this journey.

With that said the final question/comment is I think that you should write a book using your blog entries. I have put some thought into this, and I would love to. I have no idea how to start this process, so if anyone does, the information is greatly appreciated.

So, I think that is it. If I have forgotten anything or if another question comes up just post it and I will be more than happy to answer it.

By the way, Max is up to 400mL of PD fluid (goal is 480). WOO HOO! And.... drum roll please......... We only have 2 days of hemo dialysis this week!!!! WOO HOO!