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.

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!

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.

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!!!

A GENIUS Phosphorus Theory

Okay, so Max's phosphorus has come down from 25 to 9.7 but it's still high. So, Dr. Dixon and Dr. Ben talked to Dr. Bissler (another nephrologist). Dr. Bissler flat out said that he doesn't think that the phosphorus of 25 is correct. He said that if someone's was actually that high they would be showing severe signs of it being that high and Max is not. So, what he thinks is happening is this: Max has a sheath and/or "gunk" clotting the end of his hemo catheter. So every time we go in for a hemo dialysis treatment we have to put a clot breaker upper medication called TPA into his line to clear the clot so that his catheter will work for the treatment. Before we add the TPA, the nurse draws Max's labs. So what we HOPE is happening is that when the blood is being pulled past that sheath and/or "gunk" the blood cells are being broken open and that is what we are sending to the lab. A phosphorus INSIDE of a blood cell IS 25, so if this is in fact what is happening, then Max's phosphorus could actually be much lower than what the lab is telling us. The one thing that is concerning is that the lab can usually tell if the blood cells have been broken open (hemolized) and they haven't said that they have been. But I am holding onto hope that Dr. Bissler is a GENIUS and that he figured it out. If this is true, I will give him the biggest hug EVER!

With that said, Max is going to have to go through a needle stick on Monday to get a venous blood draw. They will then take another blood sample from his catheter before his dialysis treatment and compare the two. We are hoping to see two totally different phosphorus levels between the two. If this is what we see then Dr. Bissler is a GENIUS and he will receive the biggest hug EVER! If it isn't what we see then, DAMN IT!

For those of you that have been REALLY paying attention, Max's phosphorus is always higher on Mondays and lower on Fridays. My theory on this (I don't know if Ben brought this up or not, I was more focused on Dr. Bissler's GENIUS mind). Anyway, my theory is since Max goes the entire weekend without having TPA put into his line, the sheath and/or "gunk" is worse on Mondays. Therefore, the blood sample that is drawn on Mondays has more "gunk" to fight through, giving it a higher chance of breaking open the blood cells, giving us a MUCH higher phosphorus. Since Max gets TPA put into his line on Mondays, Wednesdays and Fridays, the blood draws that are done on Fridays don't have as much "gunk" to fight through, giving us a much lower phosphorus. Sounds logical right? Although the numbers that we get on Fridays (9.7 today) are still high, they are much more manageable and acceptable than the 20s that we are getting on Mondays.

We ask that you please continue to pray for Max and that Dr. Bissler's GENIUS theory is actually correct.

Phew. Dr. Dixon came to see Max today for his monthly visit and he is VERY happy with how things are going (aside from his "pesky phosphorus"). He told us to keep up the good work and that he will see us next month. I love short, sweet and to the point appointments with him. As much as we like seeing Dr. Dixon, if it's a long visit with him it means that things aren't going too well with Max. So today was a good visit.

Overall it was a good week. It will be a lot better if that GENIUS theory from above is actually correct. Please, please, please pray that it is.

Enjoy your weekend everyone!

Max's Phosphorus (and pictures)

Prayer Warriors: Max's phosphorus was very high (a whopping 24) again on Monday. The doctors have made another change to his medication and are continuing to increase the volume of his PD fluid. If the PD and medication continue to fail at keeping it at a normal level we are going to have to sit down and discuss the pros and cons of transplanting now rather than later.

They are going to recheck his labs on Friday to see where we stand. Please say a prayer that his levels look good and stay in the normal range so that we don't have to transplant before any of us, especially Max are ready.

To make things a little more clear, they are going to wait until he is fully established on PD. Meaning he will be totally off of hemo before they make any decisions about transplanting.

I personally think that it was elevated because of his good eating from over the weekend. With that said, I have been doing some research on phosphorus and it looks like pre-packaged foods (Gerber Baby Food) has higher phosphorus in it to help preserve it. So, Momma Max (as Dr. Ben calls me) is going to start experimenting with making my own baby food for Max, in my spare time that is. If anyone has and pointers, please pass them on.

Also, if you could pray for another dialysis patient who will be receiving their new kidney today. I don't know any specifics, but please keep them in your prayers.

On to some new pictures of the cutest little guy in the world:

Getting ready for dialysis
My new face everytime I see the camera
Drinking out of a water bottle for the first time
Proof that spit does exists
Daddy and Max watering the flowers
Chubba Bubba
The reason that Max can't go naked for very long
Max's first ride on the lawn mower
Happy Baby
Mommy and Max on my First Mother's Day

Congratulations Tony and Hillary!

My brother Tony got engaged this weekend to his girlfriend Hillary. We are very excited to be welcoming another sister-in-law into the family.

My parents will have wed all of their children off by the end of the year! Here's to more grandkids!!!

Update on Willie: He is doing FANTASTIC!!!!
Update on Max: He is doing FANTASTIC as well!!!

Have a great week everyone!