March 31, 2010

Still Waiting

I got a call early last week from the transplant coordinator letting me know that she was working on getting the transplant date set for July. She said that she was hoping to have something by the end of last week-- we are still waiting to hear from anybody.

I am trying to be patient, I really am. It's starting to get very frustrating though. We have a lot of things to get set into place before the surgery and not having a date is putting those things on hold. Tim needs to get his FMLA paperwork sent in and they won't process anything without the surgery date. So frustrating.

We are anxiously waiting for my second ultrasound that will be on April 26. I have been having a hard time falling asleep since I got the news. It's so hard not knowing what your body is doing-- whether the cyst is dissolving or getting bigger. I get a quick sharp pain in my lower left belly about every day. That scares me. I am hoping it means that this thing is going away and not growing. I still don't have any signs of having the cyst so that is encouraging, but it's still scary not knowing.

On a happier note, Max said "bye bye" today. It was as clear as day, but he only said it once and that was to the house. We say "bye" to everything when we leave. Bye toys, bye doggies, bye house. It was so cute, but the stinker won't say it again.

Now for the biggest news of all-- Max walked yesterday. All by himself! Okay so he used his walker, but he still walked!!! Not sideways or backwards either. Mr. Dan was so excited and I was on the verge of tears watching his little feet move forward. I was in shock and didn't grab my video camera, but I will get it tomorrow for sure.

Oh and our house is going up for sale tomorrow! We are busy busy around here trying to get things ready. We are packing things up to put in our storage unit, but also packing what we will need over the course of a year to take to my parents house. It's hard to determine what will be needed and what won't be needed. We're figuring it out though. We are so excited and ready for this process to get started.

So despite waiting for a transplant date, an ovarian cyst, putting the house on the market and moving-- life is good!

March 26, 2010

Complex Ovarian Cyst

I just got back from talking with the doctor about my ultrasound results. I have a 4.3cm by 2.2cm complex ovarian cyst on my left ovary. Dr. D told me that "9 out of 10 times these cysts are benign, but there is a chance that it could be cancer." Not the words anyone ever wants to hear. The word cancer flashed before me and I immediately thought about my family.

I know that it's such a small chance but the fact that there is a chance at all scared the shit out of me. I am so scared and I have to wait 6 more weeks before I find anything else out. Dr. D wants to do a repeat ultrasound at the end of April along with some blood work to check for markers of ovarian cancer. She wants to wait to do the bloodwork because I am not having any symptoms (irregular cycles or pain). She told me that I shouldn't worry about this and that she isn't expecting this thing to be cancerious. Dr. D also told me at my early appointment that she wasn't expecting anything to show up on my ultrasound based on the exam that she did, so I am not feeling too confident at this point.

"It's normal for a 26 year old to have a simple cyst, but not a complex cyst." Also not encouraging. I am convinced that the ultrasound room that I was in is jinxed. That is the same room that we were in when we found out about Max's condition. Same ultrasound tech and same room. If I decide to stay with this practice if we have another child, I am requesting a new tech and a new room.

There is a chance that the cyst will go away on its own or burst. I am really hoping to feel that sharp, horrible pain shoot through my left side here really soon. I will then know that this thing has burst and that it is gone.

On the postive side, Dr. D said that she called me in because she wants to keep an eye on this thing. It's not something she wants to just let go and forget about. So that was encouraging to know that at least she wants to make sure it doesn't get any worse.

The next 6 weeks are going to draining on me. Everyone is telling me not to worry, but when you hear that there is a chance that you may have cancer, it's not something you take lightly or don't worry about. I appreciate all of the kind words and prayers. Please keep them coming as I await the next ultrasound and round of bloodwork.

"Complex cyst on left ovary"

Those are the words I heard when my OB office called yesterday to tell me that my doctor wants me to come in to discuss the results of the pelvic ultrasound I hate last week. Needless to say, I am freaking out. I have heard that it's nothing to worry about and that they will just want to check it again in 6-8 weeks. But why would she want me to go into the office to tell me that? I am worried sick that something else is wrong. Was my pap abnormal? Was something else found that the nurse didn't mention?

The first thing I think of is ovarian cancer since my Aunt Donna passed away from it. I am trying to stay calm until my appointment today at 3:15. If you could add me to your prayer list for today I would greatly appreciate it.

Thank you everyone.

March 22, 2010

We've Been Bumped

So it looks like everyone, besides the Livingston's, are going out of town in June-- so we have been bumped until July. The transplant coordinator called me today and said that an email has been sent to all of the surgeons. They are still trying to get a date where everyone can be at the same place at the same time so that we can do this transplant. She is hoping to have something set up by the end of the week.

Everyone here is fighting something. I have the allergy thing going on. Tim started feeling "blah" today. Max, well I can never explain what Max is up to. He ran a fever all day yesterday (Sunday). Had a very crappy dialysis night and desatted for majority of the night (or very early morning). He has a nasty cough but is now fever free. He's happy but not quite himself. His gtube is really bothering him, so I don't know if that has something to do with it or not. I can never tell with him. We immediately thing the worse, but it usually ends up being something minor-- thankfully.

We'll see how everyone is feeling tomorrow.

Have a great week!

10 more days until we put our house up for sale! We can't wait!

March 18, 2010

Spring is in the air

What's better than a beautiful spring day and a very happy toddler? Getting pictures of the very happy toddler on a beautiful spring day!


Happy Spring Everyone!

March 15, 2010

WARNING: This is a long one

Max's urology appointment did not go like we were hoping today. It wasn't absolutely terrible, but it most definitely wasn't what we were hoping for. Tim told me that it's a good thing that I took the time to process the day before coming on and posting to all of you on how the day went.

I held it together while we sat in the exam room, but as soon as we got to the car I lost it. I thought the entire world was crashing down on us. I got home and plopped by butt on the couch and sat there for a few hours. We then baked cookies and ate them right out of the oven. That made it all better and I was ready to talk about the day and sort through the pros and cons of the news that we received.

I will start with Max's nephrology appointment. It went very well After all of Max's vitals were taken, he was kidnapped by the dialysis nurses so that Tim and I could talk about transplant with Dr. Ben and Dr. Brad. They told us that they felt now was the time to transplant since Max is doing so well. His dialysis is going very well and "his labs are perfect." So you may be thinking, why rock the boat? The answer is because it's much easier to transplant into a child who is "healthy" and doing well versus a child who's labs are all out of whack and they aren't in the best possible health. Make sense? So we all feel that since Max is doing well we should go ahead and transplant him before something happens and he ends up in an emergency situation.

I talked to them about some of the risks (fluid shifts and electrolyte problems) that we were informed about a year ago when we met with Dr. Sheldon. Dr. Brad said that he is not as worried about those risks because Max is much bigger than he was a year ago. They are still preparing for them so that they can be ready and on top of them if they happen though. They made it very clear that since Max is 12 kilograms now that this surgery is going to be easier than when we was only 10 kilograms.

Dr. Ben told us that he will be keeping a very close eye on him during the surgery. He said that even if he isn't the fellow on call that day, that he would be in and out of the OR so that he could keep an eye on Max and so that he can relay updates to Tim as often as he could. Dr. Brad also chimed in and said that they will be watching him very closely while he is in the PICU so that nothing will go unnoticed. This is exactly why we love Max's doctors. They go above and beyond their call of duty to make sure that our son is doing as well as he possibly can. I have always felt that Dr. Ben and Dr. Brad treated Max like he was one of their own children, but today, I saw how much they love Max. The way they look at him. The way they get excited with us when Max achieves another milestone. The emotion in their voices when we talk about the risks and benefits of transplant. Max is not just a patient to them. Dr. Ben and Dr. Brad are apart of Max's family and we are so thankful that we have had the honor to be working with them throughout Max's ESRD journey.

We left Dr. Ben and Dr. Brad nervous about the months ahead but confident that Max was going to pull through this other hurdle in his life.

Onto urology. My new joke is that if you need a good cry, visit the urology department at CCHMC. I am joking of course, kind of. I can't speak highly enough about the urology department, but geesh would it hurt them to be a little more positive when they speak with the families?

One of the first things Dr. Alam told us was that Max's bladder hasn't changed and that he won't be able to tolerate the break down of his vesicostomy. What does this mean? This means that Max's bladder is crap and that he needs a bladder augmentation. What does this mean? It means that Max will never be able to urinate on his own. He will have a mitrofanoff placed during the bladder surgery that he will cath himself through every few hours. Of course it's not the end of the world, but it's not what we wanted to hear. No one ever wants to hear that there child will never be "normal." Although, this is what's "normal" to Max, so he isn't going to know any different. The first thing I think about is how this is going to work when he goes to school. I can see Max being that kid who goes in and wants to show everyone his "battle wounds" and shows them how he pees. I know how cruel kids are. I was one once. I dread the day Max comes home crying because he is being teased for not being "normal." I have to say though that if this is the worst thing that we endure for the rest of this journey... I will be one very happy mama.

"This is going to be high risk mom" was the next thing that came out of Dr. Alam's mouth. This broke me in two. I hear this same exact thing every. single. time. I walk into that damn office. I know it's coming every single time, but it never gets easier hearing those words when it's being said about your child. This time was different though. This time Dr. Alam looked into my eyes with his saddened eyes and said those dreaded words. This time it hit me a lot harder. My heart broke into a million pieces. These words are exactly what break me down every. single. time. I walk into that office.

So what makes this surgery so high risk? Max's stupid bladder. I hate that bladder. I know that hate is a strong word, but that is exactly how I feel about that dang bladder. That bladder is what is making this surgery so much more difficult. What I am getting at is that Max will be getting his new kidney with his vesicostomy still in place. Why is this risky? Because the vesicostomy is a hole in his bladder. From the bladder is a ureter and at the end of the ureter is a "perfect" kidney. This ladies and gentlemen is a risk for infection. That infection has a direct shot to that beautiful kidney which increases his risk for rejection. To make it worse, Max will have a stint in place for 6 weeks post op. This is another source of infection. So not only does Max have one source he will have two that lead directly to that "perfect" kidney. So our plan of action is to irrigate (flush) Max's bladder with a strong antibiotic (gentamicin) 2 times a day until the stint comes out somewhere around 6 weeks post op. After that we will go back to the once a day routine that we are on currently. Max will also be on three antibiotics post transplant to prevent infection in those first 3 critical months after he gets his new kidney. Tim and I are also planning on taking a few extra precautions when we dialate his vesicostomy and change his diapers that will hopefully help.

So now onto to the positives that came out of the urology appointment. Dr. Alam still thought that Max was only 10 kilograms (22 pounds). When we told him that he was more like 12 kilograms (26 pounds), his face lit up. He said that his weight makes things easier on him and Dr. Alanso (transplant surgeon). He said that rather than an incision down the middle of Max's belly, they should be able to do it on the right side of his belly. They will remove his PD cath for 2 reasons. #1 is because it's on the right side and in the way of where they will cut and #2 is because it's just another source of infection. Because Max still has Grade 5 vesicoureteral reflux (don't worry-- I can't pronounce it either) into his right kidney that he will remove it at the time of transplant. Dr. Alam also feels that he will be able to implant the new ureter into a spot on the bladder that will not result in him having to move it during the bladder surgery. This is a big one. So big woohoo on that! It does look like he will have to break down Max's current vesicostomy and recreate it at the time of transplant, so boo on that.

Dr. Alam reminded us that this will not be the only kidney that Max has in his lifetime. He said that a kidney usually only last about 10-15 years, but only God knows what will be happening in 10-15 years. Tim and I think that they'll be growing kidneys in petri dishes by then. We also learned that Max will need several surgeries in his lifetime to make things how they want them. A little bit of a bummer, but we will deal with those when we get to them. One more piece of info that we found out today was that the bladder augmentation wouldn't be until Max is 3 or 4 years of age. They need one of his transplant meds to be at it's lowest dose before they will augment.

Dr. Alam had lunch with Dr. Sheldon last week and Dr. Sheldon was very please with how Max is doing. He was actually very surprised that we have gotten him this far without having to transplant. The two of them talked about Max and Dr. Sheldon thinks that our plan it the right way to go. It's comforting to know that even though Dr. Sheldon can't be here with us he is still apart of Max's care. We were told today that he was only a phone call away, so if Dr. Alam needs him during the transplant he will call him from the OR.

Alright, so I think I have bombarded you with more than enough information. Overall the day wasn't as bad as I originally made it out to be. This is our life. It's our reality and we have to grab it by the horns and run with it. Max can't live on dialysis forever and even though this surgery is going to happen how we want it to, we have to try. We have to do this for Max. This is going to be better for him in the long run so we can't be selfish. We have to do what's best for him. No one knows how this is going to turn out, but we will all kick ourselves in the butt if we wait and end up in an emergency situation. We have to try.

Please continue to pray as we are getting closer to the big day. There is a tentative date in place, but Dr. Alam wants to "bump it up" because he will be going out of the country on June 28th. I will let all of you know as soon as I know.

Thank you all for your love and support.

Phew- that was a really long one. Study up. There will be a test later :o)

On Our Way

We will be heading out here in about an hour (1:00pm) to Max's follow up Nephrology and Uroogy appointments. The biggest one is the urology appointment which is at 3:45pm. This is the day that we will find out the results of Max's tests that he had done 2 weeks ago. I am still praying for a miracle but am at peace with what we probably already know. Please pray with us that we get all of our questions answered and leave feeling comfortable with the news that we get today.

I will post this evening or tomorrow with an update.

Thank you.


March 11, 2010


Tim thinks I am super mom- he tells me this a few times a week. I look at him and smile every time he says this to me, but I have a confession to make- I am not super mom. It's during the night time hours that I sit and think. I lay in bed and hear my husband breathing slow and steady breaths right next to me. I lay in bed and hear the hum of Max's dialysis machine in the room next to mine. I lay in bed and have a very hard time turning my "switch" off. It's nights like tonight that reality hits me.

I think about life in general. Max's health. Transplant. Why Dr. Sheldon isn't going to be the one to perform the surgery. Life after transplant. Bladder augmentation. Life after bladder augmentation. Putting our house up for sale. Moving. Building our dream house. Moving again. Whether Max will be with us to enjoy all of the above.

I know I shouldn't think of the what if's. If I had a quarter for every time I heard that, I would be a rich woman. I am a worry wart at heart- always have been, always will be. I have always thought about the what if's and the risks that are involved with everything. It's just who I am and let's face it, the risks that are involved with this transplant are huge. We are risking mine and Max's life in hopes that it will make his life better. How are we to know that this won't make his life worse? We don't. We have to put all of our trust into Max's doctors, surgeons and God. God is really the only one who knows how all of this is going to turn out. I have prayed for some kind of sign that all is going to be okay. I am still waiting for that sign, but I am still keeping my faith.

I am afraid to think about life after June. I am so afraid to schedule a vacation for the end of summer or fall in fear that we will be going without our son. I am afraid to think about Max's big boy room. I have the playroom for the new house all planned out in my head, but am so scared that there won't be anyone to play in it. I am cherishing every waking moment with him right now for fear that I won't have him after the surgery.

I would be lying if I said that I don't want to do this transplant in June. I do. I am petrified, but so ready for Max to be "healthy." I want to get the machines and boxes of PD fluid out of our house. I want Max to want to eat versus us hooking him up to a feeding tube every 3 hours. I want Max to start walking, running, talking and playing like a regular two year old. I want to take Max to play dates and not get down because he is so far behind everyone else. I want to go on vacation without a truckload of medical supplies. What am I saying? I want to take Max on vacation, period.

The anticipation for the surgery is torture. I find myself googling things I shouldn't be googling. I read the transplant binder that I was given in the beginning in the evenings when I should be settling down to go to bed. Instead I am up into the early morning hours thinking and worrying about what life is going to be like. I have been in contact with a mama that I have met through a "Dialysis Babies" message board to ask her all of my questions. Her little guy, Logan, received his kidney 6 months ago at 18 months of age. She was kind enough to answer all of my questions and gave me permission to contact her with anymore that may come up. I know every child is different, but it's helpful to know that someone who was smaller and younger than what Max will be at the time of his transplant is doing fantastic with his new kidney. Thank you Jessica.

Three months from now, our lives are going to change. For the good or bad, we don't know. We trust our doctors, surgeons and nurses and feel that they will do what is absolutely the best for Max. He has come so far in his short 22 months of life. He has surprised all of us from the very beginning. God has not brought us this far to take him away from us now, right? We have worked so hard to get Max to where he is today. We have worked so hard to get to this point. We have cried and lost a lot of sleep to get Max to the point of transplantation. This has been our goal since Max was born. God most certainly wouldn't let us down now.

I am not super mom, but I am mom to a beautiful 22 month old little boy. A little boy who has taught me more life lessons than anyone ever could. A little boy who was brought into my life for a reason.

No, I am not supermom, but I am mom, and to that I am grateful.

March 9, 2010

One Test Result

Max had a overnight oxygen study done at our home last week. This is a test that breaks down the percentages of where Max's oxygen levels are throughout the course of the night. So I just a called from Dr. Piccione who is Max's pulmonology fellow. The first thing he says to me is, "I have good news for you!" We LOVE hearing those words before we get test results. He went on to tell me that 99.5% of the time that Max was hooked up to the monitor he was satting above 90%. That means that only .5% of the time he was below the preferred level.

The next things he said were music to my ears. He told me that Max no longer needed to be on oxygen. He said that Max had come a very long way since they first met him last fall. Max's lungs have grown enough to sustain him without any assistance! This is huge!

Now there is some argument between Dr. Ben and Dr. Piccione on who is responsible for his growth. I have heard that Dr. Ben is very proud of Max's growth. I am going to have to give the credit to nephrology for this one- sorry pulmonology!

6 more days until we talk bladder test results and transplant. I am hearing that the transplant coordinator is working on getting our date on the books for the end of June. I can't believe that we are only 3 months away from the life changing surgery that we have been anticipating for the past 2 years. It's very scary and exciting all at the same time.

Have a great week everyone! Enjoy this absolutely beautiful weather!

March 3, 2010

Were back from Max's tests

We had Max's urology tests today that will give us some answers as far as how Max's bladder is doing. He had a urodynamics, an ultrasound and a VCUG. Needless to say it has been a very long day.

He was not happy when they tried (and failed) to catheterize him during the urodynamics test. That was awful! He screamed (and I mean screamed like we were pulling his teeth) for 50 minutes before he wore himself out and feel asleep during the ultrasound. He slept through the first half of his VCUG and did great during the second half. The only news that I have is that he still has Grade 5 reflux into his right kidney and that his bladder holds about 50mL of fluid before he urinates. I know that the Grade 5 reflux is bad, but I wasn't expecting that to change. I have no idea what capacity a two year old's bladder is suppose to be, so I don't know if the 50mL is good or bad. It seems very low to me, but I have no idea.

On the bright side, we got to see some of Max's old buddies while we walked around the hospital for an hour in between appointments. They couldn't believe how big he has gotten. It was very nice to see some familiar faces.

We will have final results when we see his urologist on March 15th. Thank you everyone for the prayers. He did very well considering what we put him through today. I will keep you all posted as soon as I get some results.