August 31, 2009

Prayer Requests

Hello all. I have a couple of prayer request for this week. The first one is for a friend of ours niece, Chelsey Rudd. She will be undergoing heart surgery this Wednesday at Children's. Please keep her and her family in your prayers as they embark in this difficult journey.

The second prayer request is for Max. He has a CT scan tomorrow of his lungs to check for damage from aspiration. This test will give us some answers on the status of Max's lungs. We are praying for results that show that everything is clear and that there is not any damage or any other unexpected findings. He will have to be sedated and intubated for this test so that they can get a clear image. If you could also pray that everything goes well with that, we would greatly appreciate it.

Max's pulmonologist will be calling me on Wednesday with the results of the CT. I will let all of you know as soon as I hear something.

Also, if you could keep everyone affected by the California wild fires in your prayers. Especially the families of the two firefighters that were killed.

Have a great week everyone!

August 29, 2009

The Max laugh (and kiss)

It has taken us quite awhile to get it, but the time has finally come. Ladies and Gentlemen.... The Maxster's Laugh (and kiss)...

August 25, 2009

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!

August 18, 2009

Humor yourself with this one

Before we left dialysis on Friday, Dr. Ben asked me to start Max on a phosphorus supplement because his is too low. I have to laugh!

Anway, I am working on a Q&A post with some of the most popular questions we get regarding Max. Now is your chance to ask those questions that you may have been wondering about. They can be about anything, whether it be about Max, our family or our life in general. Leave your question in the comment area and I will post the answers.

I have also been very interested in knowing how many of you are following the blog. So if you don't have a question, leave a message just saying hello. Let's see how many hits we get!

Have a great rest of the week everyone!

August 12, 2009

15 months old and big news

Our little man is 15 months old today. I can't believe how fast the time is going. It seems like yesterday we were finding out the bad news and here we are with a beautiful 15 month old little man. I can't say little baby anymore because I swear he woke up Monday morning 2 inches longer then he was when I put him to sleep the night before. He is starting to look like a toddler rather than a baby. It's heart breaking, but good at the same time.

So for the big news. Tim and I have been talking to the doctors about having another baby before the transplant. Dr. Ben and Dr. Dixon had a meeting with the urology team and the transplant team this morning and the idea has been shot down for several reasons. I was heart broken at first, but after considering the reasons, it's for the best. With that said, the news that we were not expecting put about a million pounds of pressure on our shoulders. Dr. Ben and Dr. Dixon told us that they think it's going to be best to do the transplant in about 6 months or so. Their reasoning is for Max's growth and development along with allowing us to live more of a normal life. They said that with the dialysis they are only giving him about 20% kidney function whereas if they transplant he will be at 100% function. Which is good for his all around growth and development. With that said, the plan is to have him off of hemo completely by the middle of September and solely on PD. They would like to have him stay on the PD for 6 months and then do the transplant. So it's looking like Spring of 2010 will be it. Dr. Dixon said that he just threw the 6 month time frame out there, but somewhere around there would be a good time to do. For those of you that are thinking the same thing that I did, they are NOT doing this so that we can have another baby. They want us to be able to do that, but that was not the main decision maker.

Needless to say, my emotions are running wild. I have no idea why I want to break down and cry with this news, but I do. I don't think that would be appropriate considering I am sitting in the dialysis unit, but it will probably happen as soon as we get into the car. I am petrified. I am so scared to be going through this surgery, but I am even more scared for Max. I hate that Dr. Sheldon will not be there to do it. I hate that I only have 6 months to prepare for the biggest surgery of my life, even though I have no idea how to prepare for it. Most importantly, I am scared of not being there for Max when he comes out of surgery. Instead I will be laying in my own hospital bed, totally out of it, not knowing what's going on with my son who is in a totally different part of the hospital. I hate not having control of what's going on in my son's life and this is going to kill me. I know that he will be in the best hands possible, but I still hate that I won't be there right after they have him stable in the ICU.

Don't get me wrong, I am looking forward to having this surgery finished. I am dreading the bladder reconstruction, which is a harder and longer surgery than the transplant, but I am so ready to get this process moving. I am ready to take my son on vacation where he can swim and have fun playing in the sand or on the shore of Dale Hollow Lake. I am beyond ready to have the 2 catheters taken out of his little body. I am ready to have his vesicostomy closed, but scared of the new things that come along with that. I am ready for Max to want to eat rather than us having to force him to eat. I am ready for him to have the energy that he needs to want to crawl and walk. I am scared, but I am so ready for my son to be able to live his life like most 15 month olds do.

I don't think my fear is ever going to go away. I have my fears now, but they will multiple my thousands after the transplant. Germs, infections, germs, fevers, school, his first kiss, germs, etc etc etc. Our lives are totally going to change after this surgery, but we're ready for the challenge. We're ready for the new mommy and Max diet and exercise program so that we can be sure to take care of our "new" kidney. We're ready for everything that comes along with a transplant. We're ready, I think.

August 7, 2009

Phosphorus Update

Does it feel like the title of my post are very repetitious? I feel like all I talk about is a pesky phosphorus. BUT.... I am hoping that this may be the end of it. Ladies and Gentlecars (hehe anyone know what movie that's from?) uh hum (clearing throat), drum roll please....

Catheter Phosphorus #1 14.1
Catheter Phosphorus #2 2.6
Venous Stick 1.5

Can I get a woo woo!!! I will now try to control myself and explain these GORGEOUS phosphorus numbers to you! Nurse Sara (Max's primary hemo dialysis nurse) is a GENIUS as well!!! Before I go on about her genius theory, I will give you a little bit of background information so that it makes a little more sense to ya'll. Here we go. On a typical dialysis patient when a nurse is about to hook him/her up, they will remove about 3mL's of blood that they waste. In that blood includes the TPA (blood clot breaker upper medication). On Max, since he is so small, they only remove 1mL. SO.... Sara's GENIUS theory is that they aren't removing enough "wasted" blood from Max and the TPA is altering the lab results. So, the reason that there are 2 catheter results from today is this: Sara drew one lab the exact same way that we do every day, by just removing the 1mL of waste. She then drew a second one where she drew back a total of 20mL of "waste." She drew 10mL from one side of the catheter and another 10mL from the other side. (There are two lumens on the catheter- one to take the blood and one to give it back). THEN she drew his labs. Everyone still with me? If not I am sorry, I am trying to explain this the best that I can. If you are still following me, then I am very impressed by you.

Anyway, so the results go a little something like this:

Catheter Phosphorus #1- 14.1 (This ugly number is from the first catheter draw- the one with only the 1mL of waste)
Catheter Phosphorus #2- 2.6 (This gorgeous, but low, number is from the second catheter draw- the one with 20mL of waste)
Venous Stick- 1.5 (this gorgeous, but critically low, number is from the one and only venous stick)

What does all of this mean? Dr. Bissler is STILL a GENIUS and so is SARA!!!! What this means is that for 6 months or so (I say "and so" because Dr. Ben told me to guess at how long we have been fighting this pesky phosphorus, since no one really remembers without going through his million page file). Sorry, back on track now. What this means is that for 6 months or so we have been fighting a FALSE phosphorus. What this means (because of Nurse Sara being a GENIUS) is that Max doesn't have to have venous sticks anymore, or at least until his hemo catheter comes out. What this means is that we don't have to deal with medication changes 3 times a week. What this means is that we don't have to worry about Max's vessels calcifying on us. What this means is that for the first time in, geesh FOREVER, Dr. Ben called and said, "No changes, have a great weekend!"

YAHHHHH!!!!!!!!! Who would've thought one could be so excited about a phosphorus?!?!

Also, I feel it important to let everyone know that after Nurse Sara drew that 20mL of "wasted" blood, she did give it back to him. It really wasn't "wasted." His blood is too doggone precious to just be throwing it away. So it went back into his little body and got cleaned of any and all yuck with his dialysis treatment.

Phew, I think that is it. At least I think it's enough for now. Tim tells me that he doesn't like the long post. So for those of you that agree with Tim, I apologize. If you even made it this far to see my apology. I'll make it the first thing that I write the next time in warning that it's a long one.

Enjoy your gorgeous and hot weekend everyone!!!

Sorry... I also have to announce that not next week, but the week after.... We are going down to only TWO DAYS A WEEK for hemo!!!! Oh shucks, what am I going to do with my day of NOTHING TO DO???? I don't know, but I sure am looking forward to finding out. (hopefully I didn't just jinxs that whole plan!!

Have a good one ladies and gents!

August 4, 2009

Phosphorus Plan

Everyone is ecstatic about the new findings on Max's phosphorus. The nurses are trying to figuring out what other patients could possibly be having this same exact problem. But, Dr. Ben says "let's not be throwing a party just yet." So the plan is to repeat the labs on Friday (a venous stick and a catheter sample). If the results are the same, then we know that Dr. Bissler's theory is in fact correct. If their not the same then we have absolutely no explanation of what the heck is going on with it. The dialysis PCA, Danielle, describes Max perfectly. She says that Max is a "medical mystery". That is 100% true.

Yesterday before we left the unit, we have 3 medication changes and hope that Max's phosphorus is actually LOW rather than HIGH. We also have the news that if the results of the second venous stick are good, then Max will have to have them done weekly. This is not fun, considering as soon as they put the tourniquet on his little arm he screams and holds his breath. But, we will survive just like we have survived all of the other things we have been through.

Thank you again for all of your prayers for Max. We have a new prayer request and that is yet again for Dr. Sheldon. I am devastated to have to write this, but it has been confirmed that Dr. Sheldon is in a hospital in Texas fighting for his life. Dr. Sheldon has been diagnosed with leukemia. All of his children have been tested as donors and NONE of them are a match for him. So, he has been put on the donor list. According to the little birdie who told me this information, it's not looking good. So I beg you to please pray for Dr. Sheldon. Please pray that there is an angel walking around who is willing to donate their bone marrow to save his life. He is the best urology surgeon around and here he is fighting for his life when he should be saving children's lives. As I was driving home from the hospital yesterday, I just cried. I cried and wondered, why is he NOT suppose to be Max's transplant surgeon? Why is it that a man who has saved so many children's lives suffering for his good deeds? How is it that NONE of his children were matches for him? Why is this all happening?

I know I am being very selfish, but I don't want a #2 surgeon operating on my son. I want the top. I want the #1 surgeon. I want Dr. Sheldon to be putting my kidney into my son, not any one else. Please, please, please pray that a miracle comes for Dr. Sheldon. Pray that he and his family have the strength that they need to get through this difficult time. Pray for his doctors that they have the wisdom that they need to get him through this. Please, just pray that Dr. Sheldon pulls through this.

Have a great week everyone.

August 3, 2009

Dr. Bissler is a GENIUS!!!!!!

Dr. Bissler says he was just doing his job, but I think he is a GENIUS!!! Anyway...

Drumroll please......................

Phosphorus results from the catheter: 26.7 (VERY HIGH)

Phosphorus results from the venous stick: 1.2 (VERY LOW)

You heard me people!!! Max's actual phosphorus is VERY LOW. The lab actually called to let the nurses know that Max's phos was "critically low." Typically we wouldn't be cheering for a low phos, but today WE ARE!!! Dr. Ben and Dr. Dixon are communicating behind the scenes right now on what changes are going to be made with Max's medication to bring UP is phosphorus. That's right folks, they need to BRING UP Max's phosphorus.

I am SO excited about this, but I keep thinking that it's too good to be true. Is it really true that we have been fighting a high phosphorus for 6 months or so and all it was was "gunk" blocking his catheter? Could it really be that easy?

I am still in shock. I will update again once I talk to Dr. Ben and/or Dr. Dixon to see what's on their minds.

Thank you all for the prayers. They are working!!!