December 22, 2010

Thank you!

Tim and I wanted to take the time to thank those that donated to Project Santa this year! We had another successful year and it couldn't have been done without your help.


We had a great time once again delivering the toys to our contact ladies, Maggie and Cathy.  We were also able to deliver our annual cookies to Max's nurses and doctors, which is always so much fun. 

Max had a clinic appointment with Dr. Ben that afternoon.  Max's labs are stable enough for him to get a little bit of a break.  He has been pushed to every other week instead of weekly for labs and he won't be seen in clinic again until the first week in January.  In a nutshell, this means that Max is doing fantastic. 

We got to see one of the fellows that started when Max was only a couple months old.  She hasn't seen Max since shortly after the transplant so when she saw that he was walking and talking she got emotional.  It just proves that even though their job can be very difficult, if you can make it through those hard times the end result is so rewarding.  Max is a perfect example of this because 2 years ago, not many people thought he was going to survive and now here he is walking down the hallway of the nephrology office talking to anyone and everyone that would listen to him- whether he knew them or not.

Dr. Ben is leaving us this spring, so when I saw him walking down the hall right next to the little boy that he had a hand in saving, was one of the coolest experience of my life because I know those moments are limited. I have to say that it brought a tear to my eye to see all of those people lining the hall to watch my son walk.  A simple task that may seem like no big deal to some, but to us is a huge accomplishment for the little boy that wasn't suppose to survive.

So again, we thank you for standing by us throughout this journey.  It has been a long and very difficult road, but the end result has been absolutely fantastic.

December 10, 2010

Big Milestones


Hello All:

Max is doing fantastic! He continues to amazes us on a daily basis with how much he has accomplished over the past 5 months.

For example:

Before the transplant, Max had a vocabulary of only 2 words. "Ah" and "Dada". Today Max's vocabulary includes about 200 words. He is also starting to put 3-5 word sentences together. He is doing so well that his speech therapist said that she doesn't need to come on a weekly basis to work on language anymore.

Max has also started eating again. His therapist and I put him through a "Eating Boot Camp" that involved him sitting down three times a day and taking three bites at each sitting. After those three bites he could get up. He mastered that very quickly so we moved him up to 5-7 bites. Again, he mastered it. He is now sitting down and eating an entire 3.5 oz jar of food 2-3 times a day! We have also discovered that he likes chocolate milk, so we are giving him that when he asks for a drink now. When he is finished he says "yum." It's unbelievable.

The last accomplishment that we have for this post is that Max is... Well I will just let the pictures tell you:

Yup. He's walking...

...and he is so very proud of himself for doing so.

We are so very, very proud of this little man as well.


So he is not a pro at it just yet, considering shortly after these pictures were taken he fell, but dude the kid is walking when only a few short months ago he wasn't even bearing weight on his feet. He has a walker, but I don't let him use it too much because he relies on it instead of trying to figure it out on his own. He is mastering it very quickly and we couldn't be any prouder of him.



Needless to say, the kiddo is on fire. We have all of you and your fantastic love, support and prayers for getting us through the past 3 years. Thank you, thank you, thank you!

Have a great weekend everyone!

December 2, 2010

Reminder

Hello:

I am just reminding those that want to take part in Project Santa this year that all donotions need to be turned in to me by Monday, December 13th.

Please keep in mind that we are gathering gifts for kids of all ages and that all items must be brand new with minimal fabric. I will also need an estimate of how much you spent so that I can fill in the value portion of the donation form for the hospital.

If you have any further questions or are ready to set up a delivery you can email me at mommy2max08@yahoo.com

Thank you everyone :)

November 25, 2010

Happy Thanksgiving

Happy Thanksgiving to all of our devoted readers! I can't even begin to explain how thankful we are for this holiday season. This time last year Tim and I wouldn't even talk about the 2010 holiday season because we were so afraid of what the future held for us and our little family of 3.

This year- yeah this year is the first year that I actually understand exactly what Thanksgiving is all about. Thanksgiving is not about the food on our table or where and when we will celebrate the holiday. No, Thanksgiving is about the people that you get to spend it with and looking back over the past year and realizing how completely blessed you are to be exactly where you are on this given day.

My goodness we have so many things to be thankful for this year. Our family and friends for standing by us, supporting us and loving us throughout this year. The nurses that we spent our long days at the hospital with. Dr. Alonso, Dr. Alam, Dr. Tiao and the entire transplant team for successfully getting my kidney out and into Max with as few complications as possible. We are so incredibly thankful for Dr. Ben, Dr. Brad and the entire nephrology department for their expertise and devotion to getting Max to where he is today. We would not be where we are without them. (Dr. Ben- We are going to miss you greatly).

Thankful doesn't even begin to describe how I feel about this holiday season. I don't know if there is a word out there to express our gratitude that we get to celebrate this Thanksgiving with our son. Max has taught us more in his short 2.5 years than we have learned in our entire lives. His smile is contagious beyond belief and oh his laugh. Yeah his laugh is medicine for the soul. He is the light of our lives and we are thankful, blessed and honored that he is here with us to be celebrating this beautiful 2010 holiday season.

Happy Thanksgiving!

November 12, 2010

Urology Follow Up

Max had his urology follow up appointment last week. Dr. Alam walked in and started laughing because Max was literally climbing up the windows.

He took a look at Max's vesicostomy and said "We'll see you back in 6 months with an ultrasound." I looked at him confused because we always do ultrasounds and follow ups every 3 months. He told me that Max is clearly growing very well since the transplant and that he "has faith for his bladder." He wants to give nephrology the time that they need to get Max's kidney 100% healthy and to get his meds situated.

6 months from now will be Max's 3rd Birthday! I can't believe it. At our next appointment we will ramp up Max's ditropan to help with the stretching process of his bladder. 3 months after we do that, Max will have a urodynamics and a VCUG done to see if his bladder has grown and to check the pressures. With that information, we will be able to see if Max's vesicostomy can be closed.

So this all means that it's possible that Max will have a closed system in less than a year! We are holding onto hope, but not getting them too high. We are well aware that there is still a chance that he will need a bladder reconstruction, but there is nothing wrong with keeping the faith- especially when the doctor told us he has faith as well.

Keep the faith.

November 10, 2010

2nd Annual Project Santa

It's that time of year again! I can't believe the holidays are just a few short weeks away.

With the huge success that we had last year, Tim and I have decided to continue with Project Santa this year. We will be collecting toys for the kids that will be spending their holiday season at Cincinnati Children's Hospital.

We are asking for those that want to help this year to send new toys with minimal cloth on them so that they can be wiped down easily. We are looking for toys for all ages (birth to eighteen years of age). The deadline for getting your toys to us is Monday, December 13th. This will give us enough time to get the toys to the hospital in time for Christmas.

If you have any questions or are ready to drop your toys off please contact me at mommy2max08@yahoo.com.

We are looking forward to another successful year of putting smiles on these kid's faces!

November 1, 2010

Life is Good.

Paging Dr. Max

Max had his biopsy on Thursday morning and everything went well with it. They were able to sedate him without having to intubate him which resulted in him waking up smiling and talking to us. He did great.

Dr. Brad and Dr. G came into the room a few hours later with the results. The second biopsy looked a lot better than the first. Max was considered to be in level 2 rejection (moderate) with the first biopsy and he is not borderline level 1 (mild). Dr. Brad told me that the pathologist had a hard time finding one aspect of the rejection on the biopsy. We were able to see the slides on the computer and there is a huge difference between the two biopsies. The first one had a lot of bluish purple dots all over it which were the bad cells that were attacking the kidney. This time around, there were very few. Very good news.

Because there was still minor rejection they went ahead and gave him another dose of the IVIG and and one more dose of IV steriods. He also got two high doses of oral steriods in hopes that this will treat the remaining bad cells. There is some confusion of whether or not there will be a sixth IVIG infusion. I am waiting for that to be cleared up and Dr. Ben will let me know the verdict later this week.

Max's creatinine is still hanging out at .5, but the doctors are now pretty certain that it's because of the high dose of Prograf (anti-rejection medication) that he's on, so they are okay with it staying at .5 while he is on this dosage.

Max is doing great. He is all over the place and doing what a typical, healthy two year old does (minus the eating).

We also have some very good news on the home front. We are officially under contract and will be closing by the end of the year. The plan is for us to rent the house back from the new home owners until March 31st. We will then move in with my parents and break ground on our new home at that time.

We're anxiously waiting to see what else November has in store for us!

Life is so good.

Handy Manny, Doctor Max and Mickey Mouse

Hehe, Max got his shoe dirty- it's the small things in life!

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.

September 30, 2010

Results: Rejection

Definition of Rejection:
Something rejected as imperfect, unsatisfactory, or useless

What Max's body doesn't know is that this kidney is perfect. This kidney is what his body needs. This kidney is the most useful thing that his body has seen in 2 1/2years. So why is his body rejecting this perfect and purposeful kidney? We are all still searching for the answer. Whether it be searching spiritually or medically, we are all still searching.

Dr. Brad walked through that door and I knew something was wrong because he didn't have the smile on his face like he does every other time he walks through that door. Then we heard it. The biopsy showed that Max is rejecting the kidney. My heart sunk and Tim sat back in his chair. I was numb. He proceeded to tell us that there are three stages of rejection: 1 being mild, 2 being moderate and 3 being severe. Max is at stage 2. I stopped breathing. Tim reached up and grabbed my hand: a reminder that I wasn't alone. Dr. Brad drew us a picture and spoke about what he was drawing. I don't remember a word of what he said. I heard the word rejection and I shut down. My worst fear was now a reality. Max's body is rejecting this absolutely perfect kidney just a short 3 months after he got it. This perfect kidney, that we didn't have to go looking for, was at risk of failing. Dialysis immediately popped in my head. I just got rid of all that crap- were we going to need it again? We are just now getting used to this new found freedom and now it was gone.

Then I heard it. It's reversible. What?!? I slowly started coming back to what he was saying. He told us that we weren't getting out of here tonight because they were going to put Max on a 3 day course of high dose steriods to try to reverse the rejection. I then asked, what if that doesn't work? Then there is another option. Max will have to have a PICC line placed so that he can get 10-14 days of stronger medication. That will result in a 10-14 day hospital stay or just a few days stay and us coming in every day for the infusion. With this he will have to be put on strong antibiotics because it will wipe his immune system out again. (Remember: I was kind of blanked out at this point so some of this may be wrong, but this is what I think I remember him saying). Dr. Brad seemed cautiously optimistic that the steriods will work. He didn't go into full details about option #2 because he doesn't think we will need it. Fingers crossed that the steriods work.

Anyway, he continued to explain to us what the next couple of weeks are going to look like and it basically looks like this: needles, needles and more needles. Lots of blood draws to keep an eye on that creatinine. They need to see it coming down to know if they got all of the rejection out of there. If it doesn't then Max will be heading back in for another biopsy. If that still shows signs of rejection, then we go to that second option that I explained above.

We were also able to successfully have a test done that they have been contemplating doing now since he got the kidney that tells us exactly how much Prograf Max actually needs. They hesitated doing it because it requires 4 blood draws at 4 different times and they didn't want to put him through that. Since he has an IV from the procedure they went ahead and drew from that today and were able to get all 4 of the blood draws without any sticks.

So hopefully between the biopsy and the kinetics blood testing they will be able to figure out what Max needs to keep this kidney happy.

We have been told over and over and over again that the chance of Max rejecting this perfect, 12 out of 12 matched kidney is so very low. All I have to say is that the CCHMC Nephrology staff just got one hell of a case study. I guess we just proved that it doesn't really matter if you are a 1 out of 6 match, a 6 out of 6 match or a 12 out of 12 match.

Needless to say, my faith is shot and I don't think Tim ever got his back since all of this began so we are counting on you. We need you. Please lift us up in prayer. We have seen miracles happen, but after having been through what we have been through you really start to wonder. Was it a medical miracle or a miracle of God?

We are down on our knees begging for this steriod treatment to work. Please keep Max in your prayers. I have a feeling we are going to be hearing a lot of "I tuck" tomorrow considering he is stuck in this God forsaken room until at least Saturday.

Please, oh please let the steroids work.

Biopsy Update

Thank you all for the prayers. Max did very well during the procedure. He knew exactly where we were when Tim and I walked him to the procedure room and started to cry. I decided to hold him while they put him to sleep with the mask. I have done this before and new it was hard, but it wasn't fair to just hand my screaming 2 year old over to someone he didn't know if they would let me hold him. Yeah it was much harder than I remembered. I helped get him up on the table and Tim and I were escorted to the waiting room (even though we can get there with our eyes closed). I got to the waiting room and a couple of tears fell, but I held it together for the most part.

Dr. Ben and Dr. Brad come out about an hour later and said that he did great and that they were able to get two samples of the kidney. They put a rush on the results in hopes that we will get them by the end of the day today.

There was minimal bruising and we are putting pressure on the kidney as we speak, so we should be able to go home tonight. If all goes well we will be out of here around 10pm.

We are three and half hours into this and he is do fantastic. I may have just jinxed ourselves, but I am so proud of him. He sat up once and got mad when we laid him back down, but he is good now. We are on our second viewing of Toy Story and he's still content. Fingers are crossed that it continues to go this smoothly.

Please continue to pray that there aren't any signs of rejection and that we have an uneventful six and a half hours.

September 28, 2010

Biopsy is Scheduled

Max had repeat labs yesterday afternoon that showed that his creatinine is still hanging out at .5. Dr. Ben talked to the head of the transplant program and he said that if it was still elevated that he recommended getting a biopsy. So that is what we are going to do.

Thursday morning at 10am Max will once again go under general anesthesia and will have a few samples of his kidney taken to check for rejection. Needless to say, I am petrified. It has been a very hard week and to add this on top of it is not what I was hoping for.

Dr. Ben and Dr. Brad have made time in their schedules to be the one's who perform the procedure, so that has helped ease our minds a bit. Thank you Dr. Ben and Dr. Brad.

Max will be admitted for at least 10 hours after the biopsy is done. Some how we have to try to keep Max laying down or sitting at no more than a 30 degree angle for 10 hours after the procedure. I see a lot of Handy Manny, Mickey Mouse, Buzz and Woody in our very near future.

So once again we are asking that you continue to pray for Max. We are praying for no signs of rejection and for no complications during or after the procedure.

Stay tuned for a heart breaking post about one of our fellow kidney buddies. I can't quite put my thoughts into words just yet, but I will sit down tomorrow and write it all out.

Thank you again for all of your love, support and prayers.

September 23, 2010

I am so in love with this kiddo!





We are in so much trouble

Prograf Level of 3.4

Max's Prograf level came back measuring a little low at 3.4 today which means that the elevated creatinine is not being caused by the medication. So, Max and I will be heading back over to CCHMC tomorrow afternoon for repeat labs and an ultrasound. Dr. Ben is going to meet us in radiology so that we can get the results right away. Yeah, Dr. Ben is awesome like that. Thank you!

We have several theories of what's causing the elevated level. We are pumping him full of water today to see if it's simply dehydration. It could be because he just came off of his Prednisone. The tricky thing about Prograf is that anything and everything can make this level unhappy. It's kind of a pain in the butt to be honest.

Anyway, I will let you all know what the ultrasound shows tomorrow. Please keep those prayers coming.

Oh and a bit of funny news about Max. I have no idea where he got it from, but he now crosses his arms. He only does it when he sits on his little stool, but it's possibly the funniest thing I have ever seen. I will try to get a picture of him doing it and post it, because it's just too darn cute not to share.

September 22, 2010

Creatinine of .5

Max had his biweekly labs today. We got the word that his creatinine has creeped up to .5- it's typically in the .3 to .4 range, so the fact that it has gone above his norm is somewhat worrisome. No one is freaking out but me at this point though.

One of his medications (Prograf) could be causing the rise. We will get his Prograf level back tomorrow (Thursday). Depending on what it shows will determine what the next step will be. If the level is within it's normal range, Max will have repeat labs and an ultrasound on Friday. If the level is elevated, they will tweak the dose of Prograf that he is receiving and repeat the labs on Monday.

There are a lot of things that could be causing the rise in his creatinine. Of course, the first thing we worry about is rejection. The doctors insist that it is very unlikely that this is what's causing it. There is a chance that Max will have to undergo a biopsy of the kidney just to make sure everything is looking good. We would rather not go down that road because it would require anesthesia and it would add another surgery to Max's already long list of procedures. It's bound to happen at some point, but I am not quite ready for him to have to go through it just yet.

We are asking for prayers that his Prograf level is just slightly elevated and needs to be tweaked. I am also asking for volunteers of someone who would like to come hold Max down for his labs because it's getting old. No body wants to watch their little one go through this and frankly I am tired of being the bad guy. Although I am loving that Max is getting to the age where he wants his mama when we walk into a doctor's office.

Please, please pray.

September 9, 2010

2 Months Post Transplant

I can't believe that it has been two months since Max got his kidney. It seems like yesterday we heard the news that the surgery was getting moved up and here we are- 2 months into our new life.

Max is doing fantastic. The kiddo is getting into everything and talking up a storm. He now walks while onto onto someone's fingers and he just started furniture cruising. It's just a matter of time before we are chasing this boy around the house. Max is also starting to mimic everything you say and do. He has added about 10 words to his vocabulary which is a huge deal considering all he said before surgery was "ah". His speech therapist comes back from maternity leave on Tuesday and I can't wait to see her reaction!

I don't know how tall Max is at this point. That seems to be the popular question of the month and I don't know the answer. We will find out in two weeks when we go back to the doctor for his follow up. When he and I are standing up, the top of his head hits my hip. Now that's not saying much because I am short, but he looks huge to us.

Max did graduate to once every other week visits to the hospital to see his ginormous fan club. He still has to get once a week labs, but this is a step in the right direction. Let me hear a big woohoo to that!

Tim and I were informed that we need to start thinking about what medications we want Max on long term. There are risks to all of our options, but we need to sit down and dicuss them. No one really likes the one he is on now because it will end up damaging the kidney in the long run, so ideally we will get him off of it within the next few months. The other medication, Rapamune cannot be taken if Max is to go into another surgery. So if we decide to put him on that, we would have to discuss the plan for what we would do for any future surgeries. The other option would be to keep him on only the Cellcept that he is also taking currently. No one really knows if this is the best option or not, but it's an option. I keep hearing that Max doesn't really follow the typical protocol for kidney recipients- imagine that. But this time we are on the good side of that little piece of information because Max and I were a 6 out of 6 match (maybe an 8 out of 8 match according to Dr. Ben). Supposedly the way that mine and Max's numbers matched up was extremely rare, which makes us an even better match. I don't quite get all of the logistics of it, but I do know that we were one heck of a match up. Anyways, all of these decisions will be discussed between both Tim and I and Max's doctors. We will do what's best for Max and for the kidney.

So that is really all that is going on in the life of Max and his little family. Life is good :o)

One quick thing: I am going to offer you guys another Q&A opportunity. If you have a question about the transplant, life after tranplant or anything random, post it in the comment section of the blog and I will post the responses in a seperate entry next week. I know that one person asked why a non functioning kidney affected Max developmentally and physically and I will answer that one in the response post. So here is your chance- ask away :o)

Here are a few pictures and a video of what happens when you try to lay your two year old down for a nap while he is hooked up to his feeding pump:









ARGH!

September 1, 2010

Cincinnati Walks for Kids

Cincinnati Walks for Kids

We have been wanting to walk in the Cincinnati Walks for Kids now for 2 years and haven't been able to do it until now! We are so excited to able to take part in this fantastic walk that benefits the entire reason that Max is here. This walk raises money for Cincinnati Children's Hospital. We are asking for your support. You can donate to Tim, Max or I or you can walk on our team and raise funds on your own. We are walking as "Team Max" and have tshirts for all that decide to join us on October 16th at Coney Island.

If you are interested, please follow the link above to get started. We look forward to making our first year a huge success, but we can only do that with your help! If you have any questions you can email me at mommy2max08@yahoo.com.

We are looking forward it!

August 23, 2010

Bathtime with Max







Have a great week!

August 18, 2010

Unbelievable

We Love you Max from Rick Neltner on Vimeo.


For everyone that participated in this fantastic project, thank you. This just proves how many of you wonderful people are out there praying for our family and it blows us away every time we see it. This project was a secret, so it was difficult for those in charge of getting it together to get in touch with a lot of you. So I want to extend the offer to those that weren't able to get involved the first time around to please participate. I would love to see how many others are out there and all of your creative ways of showing Max your love and support. I can't wait for him to see this video and to fully understand the magnitude of supporters he has out there rooting for him.

Thank you Rick, Allie and Denise for making this project possible. Allie- I don't know how you got in touch with all of these people, but thank you. The fact that you even called CCHMC trying to get all of the doctors and nurses involved (even though they said you couldn't because of HIPAA) proves how dedicated you guys were.

Again, thank you all so very much for taking the time to show us how much you care. We will cherish this for many years to come.

If you want to still get involved in showing Max your support, you can send your final project to mommy2max08@yahoo.com.

We look forward to seeing them!

August 12, 2010

Life is Good

The kid LOVES to eat!!!

So last Friday, Tim, Max and I all headed to the much anticipated urology appointment. As I mentioned in an earlier post, Dr. Alam peeked his head into one of our clinic appointments a few weeks ago to let us know that we were in a very good situation for Max not needing the bladder augmentation. That was all he said and he walked back out leaving Tim, Dr. Ben and I wondering what had changed Max's fate.

So Friday gave us all the answers. We were told that since Max now has a working kidney that he is in a whole new situation from a urology standpoint. Max will now grow like a normal kiddo which means that his bladder will grow as well. This means that with the help of a higher dose of ditropan (a medication that helps stretch the bladder) Max has a chance of "stretching" his bladder on his own with time.

What does this mean? Max will eventually be given a much higher dose of the medication. This isn't taking place right now because they want to give the kidney and bladder time to heal and adjust from the transplant. From there- we wait. Max's vesicostomy (stoma that he pees from) will not be closed for along time (we are thinking that he will have this until he is 5 or 6 years old). Dr. Alam promised us that Max will go to the first grade in dry underwear- so it will definitely be closed before then. That seems like a long time away, but it will, unfortunately, be here before we know it. Dr. Alam also promised us that he will fix Max. He promised this twice, so I have full confidence that he will fix Max's bladder. He seemed optimistic that Max will not need the augmentation. No one is promising anything, but he said that once these valve kiddos get kidney transplants, their bladders seem to work themselves out. Fingers crossed that Max is lucky enough to have this happen. Everyone is on board with doing everything in their power to avoid the augmentation.

There are definitely some cons to this whole situation. Max is not allowed to swim in a lake, ocean or pool until his vesicostomy is closed. He is also not allowed to sit in a bath tub unless the water is below his hips. The bottom line is that the vesicostomy is not allowed to be submersed in water of any kind. The reason: infection risk. As badly as it stinks that we won't be allowed to take Max swimming for a very long time, the benefit of not having to have the augmentation is much greater. The only other issue we are having is diapering. We are doing a lot of laundry with three outfit changes a day because we can't keep him dry. We are experimenting and brain storming ways to do so, but are not having luck thus far. It will take time and lots of brain power, but we will master this at some point.

All the not so fun cons of the urology appointment are overshadowed by the fact that the surgery that we were told Max will need from the beginning is slowly slipping further and further away. And that is enough to put a big smile on all our faces and to start thinking of other ways to make the hot summer days cooler than all of those who are out there swimming in their pools.

It's going to be a great day!

I know I said birthday pictures, but the files are huge and won't download, so here are some more recent pictures:

Max and his transplant buddy, Brandon. Brandon lives in Tennessee so we don't get to see them too often, but these guys are going to have a blast as they get older.

Going on a stroller ride after the transplant. Max won't wear a mask, so this is how we protect him from the nasty germs at the hospital. We call it "the pope mobile."

Max helping his nurse out by listening to his heart. The kid knows way too much about the medical world at the age of 2.

Daddy and Max at the zoo post transplant.

August 11, 2010

I am SOOOOO Sorry!!!

That was a very long delay in between posts and I left you all hanging on how well the last surgery went and I am so sorry. That was very mean of me.

With that said, surgery #16 was a success. Max is officially, well almost officially, tube free. All he has left is his feeding tube which will be there for quite awhile. The surgery was outpatient, so once Max woke up and showed stable vital signs he was free to go. We got home and he immediately began hopping all over the living room playing with his plethora of toys like nothing ever happened.

I will update more tonight on how the urology appointment went and with some long over due birthday party pictures.

For now, we have to go meet with our architect. Talk to you all this evening :o)

August 4, 2010

Surgery #16 is Tomorrow Afternoon!

I hate that we have to send Max into yet another surgery, but this one will be quick and easy. This is the surgery that will rid Max of having a dialysis catheter for the first time since he was 2 months old. This surgery will free Max from all tubes (except his feeding tube which will be in for awhile).

Surgery is tomorrow at 1:15pm. It's an outpatient procedure so he will be home tomorrow night.

I will keep you guys posted on how he does.

August 2, 2010

Please, please pray

Some of you may remember me mentioning my cousin Theresa being diagnosed with a brain tumor. Today I am asking that you please pray for her. She will be going into surgery this morning at 10:30 to have th tumor removed.

The doctors are optimistic, but it's still a scary surgery for all involved. Please keep Theresa, her family and surgeons in your prayers today.

August 1, 2010

The Big 300!

This is our 300th post on the blog! Not only are we celebrating 300 posts, but we are also celebrating this...



This is a picture of Max right after he pulled himself up from his butt to his feet for the first time! No one was in the room when he did it so thankfully Tim walked in while he was still up. I was downstairs when he walked in on him so he yelled for me to quickly but quietly come up to Max's room. I ran upstairs and went into his room. It took me a minute to realize what I was looking at but when I did I immediately got tears in my eyes and ran to get my camera. Saying that I am proud of him is an understatement.

I can't believe how quickly all of this is happening. Life with a healthy child is amazing! He was fun before transplant, but I can't believe how much fun he is now. It's kind of crazy to see all of the new things that he is doing. He is all over the place and we are having to "baby proof" the house for the first time. This new life is awesome and I can't wait to share more milestones with all of you!

Also, Max's kidney is doing awesome! His labs are beautiful and the ultrasound looks great! Despite the fact that it took the blood drawer 6 sticks to get his blood on Friday, the 3 day a week visits are going well. We should be going down to 2 days a week here very soon. Life with a new kidney is going fantastic!

For those of you who have been asking, Summer is doing okay. They ran into some complications during surgery and have been having some problems keeps her fluids under control since. The kidney is working well and she is producing urine. She is still on the vent and are hoping to have her off sometime this week. Laura is exhausted from being at the hospital 24/7 and is having a hard time getting the rest she needs. Dan is doing well and has been discharged.

Have a great week everyone!

July 26, 2010

Summer

I had mentioned in a previous post that Tim and I have gotten the privilege of meeting two other families who's little ones are in kidney failure. Brandon got his mommy's kidney back in May and is back home to Tennessee. He is doing fantastic and we look forward to seeing both him and his mom in August.

Summer is the other little girl we have gotten to know and love. We met her mom Laura a few weeks ago when Max was in the hospital for his PD catheter. They too are from Tennessee and are here in Cincinnati for Summer's transplant.

The day that we found out that Max's surgery was moved up, we also heard that another patient was given Max's old date of July 27th. That patient just happened to be Summer. Summer just recently celebrated her first birthday. A birthday that was celebrated within the walls of Cincinnati Children's. Summer has had a very rough road and it's not over just yet. But tomorrow morning, at 7:45am Summer will be getting her daddy's kidney.

The group of us kidney baby mamas is very small, so we consider ourselves very lucky to have found each other. We consider all of these kids our own and we take them all under our wing. Summer is the youngest and smallest of all the kiddos, which definitely makes her extra special.

Tim and I are both very nervous for Laura, Dan and Summer, but we know that they are in very good hands and are confident that they will be taken care of. We are asking that you please keep this family in your prayers just like you did for us. Tomorrow morning, Laura will kiss the two most important people in her life goodbye as she hands them both over to the surgeons. She too will be pulled between the PICU and A4North to take care of her family just like Tim was, so we ask that you hold them up in prayer. Tomorrow- Laura, Dan and Summer get to begin their new life and we are thrilled to get to share it with them.

Tomorrow is going to be a good day.

Confession

In the work up process of donating a kidney you are required to have a psych evaluation. During this evaluation you are told that depression is a risk of donating. I didn't quite understand why someone would fall into depression after giving someone the gift of life. I didn't understand until I donated my kidney to Max.

I wouldn't say that I am full blown depressed, but I am definitely down. I finally realized why I was feeling this way over the weekend. The life that I have known for the past 26 months is gone. The life of 10 different medications that were given 6 times a day, feeds every 3 hours, dialysis for 12 hours a day, blood pressures, weights, oxygen, monitors and dressing changes is gone. Don't get me wrong, I am thrilled that all of that is over. This is what we have been wanting from the beginning, but it's definitely an adjustment. An adjustment that I am willing to make, it's just going to take some time to get used to. We have free time that we have no idea what to do with because we haven't had it in so long. We are able to just get up and go and not worry about being home by 9pm to hook Max up to a machine. It's just a weird feeling, but a welcomed one.

During the months before the transplant I tried to prepare myself. I think I put a wall up for preparing what life would be like post transplant. I was more focused on preparing myself for the surgery itself and the risks that came along with it. I think I was too afraid to go beyond the surgery because I was told over and over again how high risk it was. Now that all of that is over and we are home, I am trying to figure out how to live life as a "normal" family. I will get used to this. Life is perfect right now and I couldn't ask for anything more, it's just going to take me some time to get used to having a healthy two year old and all of the things that come along with it.

So this little bout of "depression" will pass. Life is way to short to not enjoy every moment and I will not let this stop me from doing just that. Our little boy is healthy for the first time and we can't wait to grab this new life by the horns and live the heck out of it.

New piece of information: Max had his routine labs and follow up appointment today. While we were sitting in the room waiting for the doctors, Max's urologist poked his head in and told us that he didn't want to tell us this before the transplant because of everything we had going on, but they are going to try again with Max's bladder. Meaning they are going to ramp up his ditropan in hopes that he will not need a bladder augmentation. He went on to say that we are in a very good situation right now. This is HUGE! We have an appointment with him next Friday so we will get more information then, but this was music to our ears. We do not want Max to have to have this surgery. It is a long, high risk and nasty surgery that follows with a 4 week stay at the hospital. Please pray that Max's bladder does what it's suppose to and that he doesn't need this surgery.

I will be posting a prayer request this evening, so please check back to see who is needing your prayers for tomorrow.

Have a great week!

July 21, 2010

Bare with me. I have no idea what happened to the blog. I am trying to figure it out, which could take awhile.

Beth

A New Life

I teared up this afternoon while we were walking out of Children's Hospital. This time was not because we were leaving Max again. I cried because today was the start of our new life. After 2 weeks in the hospital, Max was discharged.

It felt like the first time we brought him home from the hospital a year and a half ago. We had to have a little "class" with the transplant coordinator and doctors on Max's new medications and how/when to give them. The whole discharge process went a lot quicker than I was expecting. Before I knew it we were on our way out the door with our new medications in hand and our follow up appointments scheduled.

We are so glad to be home and all under one roof. Max is thriving and enjoying his new freedom. He got home and immediately wanted to eat. This is all very new to us so we sat him in his seat and fed him. We then sat down for our steak dinner and Max wanted to sit with us and eat as well, so we let him. I can't get over the changes that he has made in the short 2 weeks since surgery. It's crazy to think that everything that he is delayed in was all due to his lack of functioning kidneys. I absolutely love seeing his new tricks and I can't wait to see what else he has in store.

Now that we are home, we are trying to get Max's new med schedule and routine figured out. We still have to care for his vesicostomy, so our nightly routine still isn't as easy as it could be, but we do not have to do anything with his dialysis. This means no more blood pressures, weights, shots, machine prep or hook up which took our bedtime routine from an hour to about 15 minutes. He is no longer needing oxygen which means that he is not hooked up to anything at night. He went from having 3-4 tubes/wires connected to him every night to zero. I have to say, it felt weird just laying him in bed, kissing him goodnight and turning the lights off. I felt like we were forgetting to do something, but this is our new norm and I love it.

I got teary eyed leaving the hospital today, because today is the first day of our new life. Today- we get to be a "normal" family for the first time since before Max was born. Today is the start of our new life and we are going to grab it by the horns and live the heck out of it.

July 19, 2010

UNEVENTFUL WEEKEND


MAX AFTER SOME SWEET PATATOES



So not much to report here from CCHMC, Max's platelet count was 94 today which is about half way to where it should be. He has begun to show some interest in eating, and all in all continues to do fantastic. We are still looking at going home sometime early week and we are definitely ready. Beth continues to recover at home and seems to be getting a little better each day, she is also ready for us to be home. Beth definitely misses having her little boy at home. Other than that not much going on, once again THANK YOU FOR ALL THE LOVE AND SUPPORT.

July 15, 2010

One Week Post Op

Max and mommy the night before the big day

Here we are. One week post op and things are going extremely well. Max is still doing better than I am, but we are both on the mend.

From a Max standpoint, speech and OT have both been by today. Max was a complete crank so nothing was accomplished. They will retry tomorrow. His platelets came up to 18 today which is still very low, but they are steadily increasing every day, so the doctors are happy. So the plan is to do an xray with contrast on Tuesday to check the swelling in the new ureter and kidney. If all goes well they will pull the catheter and possibly sent us home that afternoon. They may decide to keep him so that they can watch his labs a little more closely. We shall see.

As far as I go. I am doing well. I am still pretty uncomfortable, but it's tolerable. The worst part is trying to get comfortable enough to sleep at night. I am pretty bloated and swollen in the abdomen region and my ribs and pelvic bone are sore, but overall I am surviving.

So what does it feel like to donate a kidney? Well it feels like a train rain over you, reversed and rain over you again. It hurts- really bad. I knew there would be pain, but I was not prepared for the kind of pain that I experienced. Morphine wasn't working and the stronger pain medication that they put me on wasn't working either. Every time I moved or talked I got extremely nauseous. I vomited a couple of times- OUCH! I could barely keep my eyes open. I was light headed, couldn't see straight and just overall felt like crap. Would I do it again? Absolutely.

Seeing the change in Max has made all of this absolutely worth every ounce of pain that I have had. Max's lips are no longer dry, he no longer has circles under his eyes, his coloring is better and he has not gagged once since the surgery. For those of you that know Max you know that he gagged and retched at least a dozen times a day. He has not done it once since last Thursday. It's incredible to see the strides that he has made in just a short 7 days. You can see his little wheels turning all the time. The light is finally coming on in his little head and it's unbelievable to see. He won't nap because of everything going on around him which makes for a very cranky little boy, but overall he is doing phenomenal!

I can't believe it. This whole experience has been so surreal. I am so glad that it's over and we are ready for him to come home, but I am trying to cherish all of these milestones. The experience has been bittersweet for me as well. I have to admit that I had a few days of depression after the surgery. I realized that I left the little boy that we all have grown to know and love on A7 central Thursday morning. I kissed him goodbye and didn't realize that I would never see that little boy again. I am at peace with that now. I realized we didn't loose the old Max, we just got something better. We got the honor of receiving the new "Max 2010" on July 8 and we can't wait to learn all the new things that he's got to offer.

Thank you for coming along with us on the journey of End Stage Renal Disease. This is me officially (and finally) ending that chapter and beginning the new one of Max's life post transplant.

Max one week post op

July 14, 2010

Max and Beth Update

Hello everybody It's Tim again

Sorry We haven't posted in a couple of Days. Things Here at CCHMC are going well, Max is recovering nicely. He is like a whole new boy, he's almost back to his normal self, bouncing around his crib and playing like he didn't have major surgery 6 days ago. His platelet count has begun to stabilize and his doctors are happy with all his other numbers. He has changed so much for the better it is unbelievable, who knew a kidney would change him in so many other ways. Max has not gaged once since surgery, he seems more attentive and even his lips look better.

Now for Beth, she is feeling much better than she was on Monday. She is still a ways away from being recovered, but is doing well. She says she will post a more detailed update tomorrow so until then goodnight.

July 12, 2010

BIG BIG DAY

Ok so first off I'm glad you all liked the video. Next up Beth is starting to feel a little better and is starting to eat a little bit. Now for Max, as you can see in the video he is starting to feel pretty good. His lab work this morning continues to improve, his kidneys doctors are happy ( BUN 15 Creatnin 0.2) Liver Doctor says she just wants to monitor his blood work for a couple more days then she is no longer needed. His platelet count is still low but the rate at which they are disappearing has improved so that is definitely good.

Alright Are you ready for the BIG BIG NEWS OF THE DAY. It's moving day here at CCHMC. Beth is moving to her make shift 1st floor bedroom at home, and Max (drum roll please) is MOVING OUT OF THE ICU TO THE REGULAR FLOOR ( applause ).


Thank You Again for all of the love and support, I don't know how we could do it with all of it.
Tim

July 9, 2010

Just Another Curve Ball

Hello Everyone this is officially the first time I have Posted,
I thought I would post a little update since my lovely wife is not feeling up to it just yet. Beth is still having allot of pain but she has gotten up a couple of times. She has yet to make it up to see Max, for all of you that know Beth that should give you an idea of the pain she is in. Other than the pain, a little nausea and a headache there is not much going on with Beth, just resting and healing.

As for Max, He has yet again thrown us a curve ball. Max's platelet levels have been low since surgery and the Doctors have all been scratching their heads and running test trying to figure out why. It has been a very busy day for the poor little guy, we have seen nephrology, surgery, radiology, urology and hematology today, all of which have had theories and ideas of the cause. Once again Max stumped them none of the test proved anybodies idea right. I think between today and yesterday Max has had an ultrasound done on every body part. We even had Dr. Alonso and the radiologist present for the last ultrasound.

After all of that, the doctors have all talked and come up with another idea of what might be causing the low platelets levels. They feel Max's liver may have bruised during surgery and some test have shown his liver enzymes are elevated which would indicate that this is true. So as of now the plan is to keep an eye on his blood test as the liver should slowly heal itself and possibly help it along with some vitamin K if needed. So lets all keep our fingers crossed that this is the culprit and it corrects itself with a little time


Thanks Again For All The Love And Support
Tim

The Day After

Hello Everyone and, no, this is not Beth. Day 2 has been a very uncomfortable day for Beth and Max. Beth has been having a lot of pain, which she anticipated. What she didn't expect was the severe nausea, muscle spasms and headache that accompanies the surgery and the morphine pca.

Her catheter was taken out today and she was given 8 hours to get up and pee. I know, for a fact, that she waited as long as she did because of the pain associated with getting out of bed. When she finally couldn't hold it anymore, she called for assistance and, of course, a male pca came in. My modest daughter looked at me wide eyed and with regret for even calling out for help. Needless to say, she had to pee that bad. Luckily, after the nausea and the feeling that she was going to pass out, we made it to the bathroom without the aide seeing her butt, and after sitting for 15minutes, she was successful.

Max is doing okay but is also having a bad day. He is also having a lot of pain and is on a Fentanyl PCA pump. He is groggy and cranky but, according to his dad, is looking better. His labs are a little abnormal but beginning to stabilize. Their main concern right now is his low platelet count. The docs are assuming that this may be caused by one of his medications which, hopefully, is an easy fix.

So keep the prayers going because they have definitely made a difference. Hopefully, Beth, Tim and Max have a more restful night.

July 8, 2010

Thank You

Thank you for all your continued love and support. We are truly blessed to have such great friends and family. I also wanted to let all of you know how strong of a woman Beth is. She has undergone so much for Max. I LOVE AND ADORE HER MORE THAN I CAN EVER SHOW. Thank you so much for your support and prayers.

Love you all, Tim Livingston

Updates on Transplant

Hello everyone!
This is Allie, ( Beths best friend) I will be letting you all know as updates come about. Currently Beth and Max are in the operating room and thats all i got, so keep those prayers coming!

10:30am - Beths kidney is out and Maxs is almost out.

11:45am - Beths healthy little kidney is out and being prepped to go into mighty Max! It is estimated that Beth will be out of surgery in about an hour and a half. It's almost time for the switch-a-roo!

12:35pm- Beth is heading to recovery. I hear her surgery went great. They are halfway through sewing Maxs new kidney in! things are also going well with his surgery currently. Keep on praying!

1:15pm - Dr. Ben says the kidney is in, and its pink! Tim just left to go see wonder woman in recovery!

*Beth is heading up to her room. Max is still in surgery. The kidney is good, and it already peed! I think Beth is feeling a bit rough.

3:30pm - Max is in the process of getting closed up now. Doctors should be out in about an hour to talk to Tim. They need prayers for speedy recoveries!

4:16pm - Max is out and in recovery. Everything went great, and nothing but good news on our end! continue prayers for quick recoveries!

Beth was right in her last post, today WAS a good day. Thanks to everyone for all the prayers, they seemed to work! They were in awesome hands today!

July 7, 2010

It's going to be a good day


It's here. The day that we have been anticipating for the past 2 years is finally here. We are so excited to have this day behind us and for Max to get to experience what it's like to be a "normal" kid.

Through this journey we have gotten to know a lot of people. People that have changed our lives forever. We have learned lessons that will have an impact on us for the rest of our lives. We are not regretful that we were chosen to parent a child with ESRD. We are blessed. Max is who he is because of the hand that was dealt to him. Max is a beautiful little boy on the inside and outside. He puts a smile on everyone's face that comes in contact with him. He is an extraordinary little boy that has the potential of doing great things when he grows up.

I have had the honor of meeting a few other kidney baby mamas in the past few weeks. They are all from Tennessee and two of them have chosen to come to Cincinnati for their little ones transplants. Laura's little girl, Summer, has been put into our old slot of July 27th. Everything happens for a reason and I feel that Max's transplant was moved up so that Summer could get her daddy's kidney without having to wait too much longer. Yvette gave her little boy, Brandon, her kidney about 8 weeks ago and both are doing beautifully. Yvette has come to the hospital to see both Laura and I just to make sure that we are hanging in there and doing well. She has been a blessing for me because she has already been through the transplant. She is answering all of my questions. She cries and laughs with me and tells me how awesome it is to see your child blossom with their "new" kidney. Yvette- thank you. Thank you for all that you have done for me in the past few weeks. I just met you but I feel like I have known you my whole life. You truly are a blessing to us and we are honored to have gotten to know you in real life rather than just over the internet. Thank you.

We also need to thank all of you who are praying for us. The prayer vigil such a huge hit that it got extended to 48 hours rather than just 24. You all are amazing for doing this. It means so much that so many of you are out there praying for us. Whoever prayed for Tim and I to find peace tonight, thank you. The prayer was answered. My brother and sister-in-law came over with dinner, Max was cracking us all up and Yvette came to see us. It was such an enjoyable evening and we are at peace with what tomorrow will bring. We feel that this surgery is going to go well. We know that there will be complications, but they won't be anything that we can't handle. Max is a tough little guy and will pull through this. We have gotten this far. There is no way that God would end our journey now. Not after all that we have been through.

In 9 hours I will head down to the same day surgery area, get signed in, have an IV placed, get into my gown and wait for the life changing moment that we have been waiting so long for. At 7:45 tomorrow morning I will be wheeled into the OR for the third time in my life. The first time was the open fetal surgery that saved Max's life. The second time was on May 12, 2008- the day that Max was born. The third will be the second time that I have gotten the honor of saving my son's life.

Tomorrow is a new day. July 8, 2010 is the day that Max gets a chance at a new life. Tomorrow is going to be beautiful.

July 4, 2010

The Plan

We have been so busy this weekend, but enjoying ourselves as well. We spent Saturday evening with family and friends at a river camp. Sunday has been filled with running errands and trying to get things together for the upcoming week.

I wanted to let you all know what the plan is for this week as we get ready for Thursday.

Monday- Max needs to have his PPD (TB test) read, so we wil be heading to CCHMC for this sometime in the early afternoon. There is talk about my whole family going to my Aunt's house around 2pm to celebrate and to see everyone before the big day. We are also going to Tim's parent's house to eat dinner with his family.

Tuesday- Max and I have an appointment at 8am at CCHMC to have our final cross match drawn. This is the final work up that both Max and I have to have before the surgery. These results will hopefully show that nothing has changed from the original bloodwork that we had at the beginning of this process. The doctors want us to hang around for the results. If Max's labs are wacky they will go ahead and admit him so that they can do 24 hour dialysis to get him good and ready for transplant. If they are good, we will be heading home for our last night before he gets admitted.

Wednesday- Max will be getting admitted sometime in the afternoon. My guess is around 3pm. I am hoping to get Max's hair cut in the morning :o) He will have a mullet if I don't.

Thursday- The BIG day! I am due to be at same day surgery at 5:30am. I will get my IV put in, get into my gown and wait for the doctors to come talk to me. The surgery is due to start around 7:45am.

I am still in shock that all of this is happening so quickly. I am on the biggest emotional roller coast ride of my life. I cry when I hear a sappy song on the radio. I choke up when someone hugs me because it's the last time they will see me before the surgery. I cry as I watch Max sleep at night. I cry just because I am thinking about everything that's about to happen. I can gaurentee you that I will cry when we hook Max up for his last dialysis treatment and I will ball my eyes out when I have to say goodbye to him as I head to same day surgery on Thursday morning. I am sure that I will cry while I wait in that tiny little room waiting for my turn to be taken back.

I am scared, anxious, nervous, excited, scared, overwhelmed and scared. I am scared mostly for Max. I have to be honest, I haven't even thought about my part in this yet. My biggest concern right now is Max. I need him to pull through this. I can't lose him now- not after all that we have been through. I am confident that the doctors wouldn't be doing this if they didn't think he would survive. He will pull through. We will pull through this. I am not naive. I know that there are going to be complications. We just pray that they are minor. Please pray with us that all complications are minor.

We wouldn't leave you guys hanging all day without any updates, so my best friend, Allie, will be updating the blog and Facebook throughout the day Thursday. If you have any questions please don't hesitate to ask them. She will be there all day supporting us and to keep you all informed.

I will post again before the surgery. Please keep praying for this to go well.

My cousin Jessica is putting together a 24 hour pray vigil starting the hour of the surgery. If you would be interested to take part in this please email her at Jessica.Wells@FMR.com. It sounds like each person can choose which time they would like to do. The times are in half hour intervals. Thank you to everyone who is taking part in this. It means the world to us to know that there are so many prayers being sent up for both Max and I.

July 2, 2010

Well we got new information today. News that rocked my world for the better. The news first brought fear, then excitement. It brought tears and a smile that I couldn't wipe from my face.

The unfortunate part was that I didn't get to hear the news from Dr. Ben and Dr. Brad. It was their news to share with us and someone spilled the beans before they got the chance. When I saw Dr. Ben and Dr. Brad walk through the door, I could see their excitement. When they found out that we had already heard, their faces sank. I could see the excitement leave them. They were robbed of this fantastic opportunity to tell me this exciting piece of information. It broke my heart. They confirmed the news I had heard earlier in the day and gave me the details. They both walked out of the room to get some other details taken care of. Dr. Brad walked in to talk to me about a medication that Max will need to start tomorrow and he had this look on his face. A look of satisfaction. A look of pride. It was at that moment that I thought I saw Dr. Brad's eyes get glassy. He turned to me and said this is a very good thing. He walked out of the room and I started to cry.

Today we got the news that this coming Thursday, July 8, 2010 at 7:45am Max will be receiving my kidney.
There was a little confusion with the two posts below that have similar titles. They are different posts. Sorry :o)

Max's treatment went "swimmingly" last night. I am still waiting to hear from the doctor's on what the plan is and if we get to go home today. I will let you guys know as soon as I do.

Thank you for all of your thoughts and prayers.

25 days and counting...

July 1, 2010

Today's Plan

Okay so we finally have a plan and have put it into action. Max just finished a four hour trial of PD to see if it would work on the cycler and it did. So, we are going to hook him back up around 7pm for his 12 hour treatment, just like we would do at home, to see if it will work. This is when we usually find ourselves having issues. We are hoping that if we start the treatment while Max still awake, we can get through the problematic first 2 or 3 cycles. If this fails, we are going to try the hospital's cycler to make sure that it's not our personal one that I brought from home.

Other than that, we all still think that his fill volumes are too low for the machine's liking. We have to move very slowly to get him back up to his fill volume of 480mL because of the 2 surgeries that he had only 10 days apart. He went up to 280mL this afternoon and I am hoping that they will increase him to 300mL tomorrow. The sooner we get that level up the better. We shall see if that really is the issue.

We have totally ruled out that it's not the catheter, thank goodness. It's either the machine or his fill volume.

Keep those fingers crossed that we figure this out so that we can go home and enjoy the holiday weekend.

Another terrible, horrible, no good, very bad week

We have been in the hospital since Monday morning and there is no light at the end of the tunnel.

Max's surgery went very well on Monday afternoon and he pulled through like a champ. We tried out the catheter on Monday night with confidence that it was going to work and that we would be discharged on Tuesday. Well it didn't work. We are having the same problems that we had with the last catheter- it fills beautifully, drains well until you get half the volume back and then stops. So we had to end his therapy early, again. It was 3am by the time we got him disconnected and I was able to finally get some sleep. 6am comes around and a surgery resident comes in, turns on the biggest and brightest light that the room has to offer to look at Max's site. Well good morning to you too jerk. We were thankfully both able to fall back asleep for a couple more hours.

Tuesday was possibly the worst day thus far. Everyone wanted to try a manual PD but because it takes a lot of man hours, the nurses on the floor can't do it. We had to go to the PICU. I told the doctors that I knew how to do it since Max went home on it for a week when he was 5 months old. They all said that I couldn't do it because of what the policy says. So they put the orders in for us to be transferred to the PICU. Four hours later we were on our way. we got to the PICU and all hell broke loose. The nurse immediately started throwing a fit because there wasn't a nurse with Max and because he wasn't on any monitors. Then she threw a fit because Max was screaming and holding is breath because he had just woken up and was in a new environment with a new nurse who he had never seen before. So when she hook him up to the monitors, his sats were in the 50's. She freaked out and called the response team. I told her that he does this and that he will come up on his own. She refused and started shoving the mask in his face. I told her that the mask pisses him off even more and she wouldn't listen. I took it from her and told her that I would do it. I held it near his face so that he was at least getting a little oxygen and he ended up coming up on his own. This nurse was just flat out rude to both Max and I. She was then telling Max to sit still while she tried to get a blood pressure. I wanted to freaking punch her. What screaming two year old is going to sit still for a blood pressure? She went straight into the rules of the PICU- the parents aren't allowed to do any of the care, we aren't allowed to do the dialysis, vitals every hour, assessments every two, no food, only 3 visitors at a time, etc. I was fine with the "rules" but the way she said them made me even more ticked off. Just flat our rude! She then proceeded to tell me that she doesn't even know why we are here because they don't know how to do the manual dialysis either. I looked at her and said you have got to be freaking kidding me. By this point I was on the verge of tears. She finally said that she was going to leave us alone and let Max calm down. It's a damn good thing so left us alone for a bit. I needed to calm down myself.

The manager eventually came in and said, "So I hear that you have had a rough transition." You think? She apologized and told me that they were looking for the policy to see if we could go back to the floor and have me do the manual dialysis. About an hour later they came back in and said that the policy is a mess and needs to be rewritten. The first paragraph says that the nurses on the floor can't do the manual because of the man hours it entails. The paragraph right below that says that they can if they have the resources. In this case, I am the resource. I am infuriated at this point. WHY wasn't the policy pulled out and read before we went through the trouble of being forced to the PICU with this extremely rude nurse? I was absolutely infuriated at this point. The decision was finally made for us to stay in the PICU for the night on manual dialysis and we would be transferred back to the floor on Wednesday. Fine. We can deal with one night. Tim decided to let me go home and sleep since I was running on about 4 hours total. Thank you Tim.

Manual dialysis went beautifully throughout the night, so they wanted to try him on the cycler before we got moved back to the floor. We hooked him up to a four hour cycle and it too went beautifully. Max slept through two of his drains and it still worked. That was my biggest concern, since that is when we have the most problems. We were then transferred back to the floor with the nurses that we have grown to know and love. We got situated, again, and took Max for a walk. It was absolutely gorgeous yesterday so it was very nice to get him outside to enjoy it for a bit. We got back to our room and waited for the orders to be put in for the dialysis. I got to go home again to sleep while Tim stayed with Max.

That brings us to today, Thursday. I called Tim this morning to see how things went and he said that they had to stop it after his third cycle. The first drain is what ruined the treatment. The first drain left him with a negative UF of 114. His second drain went much better, but was still negative about 10. The third drain went just as well as the second but because he was already at a high negative UF the machine couldn't go any further. It's a safety mechanism that prevents over fill of the fluid.

I have been here since 7:45am and I am yet to see or hear from anyone with what the plan is. It's so frustrating that it takes them hours to decide on what to do.

I will update as soon as I know what the plan is.

June 27, 2010

It's been a terrible, horrible, no good, very bad week

I really don't even know where to start to explain to all of you how absolutely terrible the past week has been. Last Friday, Max underwent his 13th surgery to replace his catheter. He spent the night in the hospital and was released on Saturday evening. Saturday night's treatment went okay. He had a lot of alarms, but we made it through the entire 12 hours. Sunday night was a totally different story. I couldn't get him past his second drain, so I ended up having to end his therapy very early. Same thing happened Monday night. So on Tuesday we made a trip to Children's Hospital. They put TPA in his line and it seemed to be helping, so we headed home. To our disappointment, the treatment ended the same as the two previous nights. We headed back to Children's on Wednesday morning and there we stayed. They did another dose of TPA and the catheter drained beautifully. We hooked him back up to his dialysis that night and couldn't get him past the second drain again. We ended the therapy early for the forth night in a row. Everyone, except for me, was ready to send Max back to the OR. I asked the doctors if we could try one more thing and they all agreed. It worked! They did a 6 hour run Thursday morning while we were at the hospital, and it went beautifully. We got discharged Thursday evening. When we got home, we hooked Max up to his dialysis, and you wouldn't believe it, but it did not work. I had to end his therapy after the second cycle for the fifth day in a row. I didn't give up hope just yet. I was trying to figure out what was different from the treatment in the hospital vs the treatment at home. Everything was the same, except for one thing. Max was awake at the hospital and asleep at home. So on Friday morning, I called the PD nurse like I was instructed to do and told her that I wanted to try one more thing. If it didn't work, I would bring Max right in. Everyone agreed, so I started my little experiment. I hooked Max back up to his dialysis while he was awake and moving around. Wouldn't you know, the dialysis actually worked. For 12 straight hours, the machine put fluid into Max's belly, dwelled it for an hour and drained him perfectly. Thank God!

So since Friday, Max has been hanging out in his room attached to a four foot leash. He has done remarkably well. Today we decided to bring his machine down to the living room so that he could hang out downstairs with everyone. Things were going perfectly. Max was hopping all over the place and ended up getting himself wrapped around his machine. When we went to unwrap him, we didn't see that the tubing was pinned under the machine, so when we picked him up, his catheter got yanked out of his belly. Max started screaming, fluid starting flowing from the exit site and I panicked. I ran outside to get Tim and then I rushed to call the fellow on call, that thankfully ended up being Dr. Ben. I was running around while on hold packing our bags and trying to get everything that we would need during our stay at the hospital. I finally got a hold of Dr. Ben and he told me to keep sterile gauze on it to catch the drainage. Tim was already on that, so I asked what else we needed to do. He told me that he was going to call the attending to see if we needed to come in and if we needed to start antibiotics. Ben called me right back telling me that Dr. D wasn't too worried about infection and that we didn't need to come in. I was blown away. I thought for sure that we had just landed ourselves into the hospital for the next few days. We spared our Sunday evening in the hospital, but we will be going in tomorrow morning for Max's 14th surgery.

We are due to arrive at CCHMC at 6:45am to get Max admitted. From there we will head to our room, answer 1000's of questions that I have answered over and over again, get Max's labs drawn, an IV put in and fluids started. We will then start the dreaded wait of when Max will be called to the OR to have his catheter replaced. It could be anywhere from 9am to 9pm. We are considered an add on, so they will fit us in when there is an opening.

And that ladies and gentlemen is what we call a terrible, horrible, no good, very, very bad week.

Hope all of yours was better.

June 22, 2010

DONE

I don't feel like "done" is a strong enough word to describe how I feel at this point. I am no longer pushing for transplant because it's a convenience to us, I am pushing for transplant to save my son's life. Dialysis is not working anymore. I don't know what else to say to get everyone on board with the transplant.

We spent almost 5 hours at the hospital today. Max had labs drawn, a 300mL flush that only drained 150mL, an xray to check catheter placement, TPA dwell, another 300mL flush that drained 250mL and another TPA dose put into his catheter. Everyone thought that this was it. It was going to work. I, on the other hand, wasn't so confident. I was right. We got home and let Max have some time off of that God forsaken machine. After I woke up from my nap, we started the process of hooking him back up. The next 38 minutes of dwell time seemed like an eternity. My stomach was in my throat. Something was telling me that this was not going to go well. 7 minutes before he was suppose to drain, I told God that this was His time to gain my faith back. He didn't. Four alarms went by and we had to bypass the drain. Negative 56. Dwell two came and went. Alarm after alarm. Negative 152. I finally called the fellow on call and I have to say that I was not happy when I got off the phone with her. I felt like she was telling me that she didn't feel like dealing with it tonight. She told me to go ahead and end his therapy, give him a dose of Kayexalate and call them in the morning.

I hung up the phone, walked upstairs into Max's room and lost it. I sobbed over my sleeping little boy for a good 30 minutes before I went to the floor and sobbed for another 30 minutes. I am scared. This is not funny anymore. The game is over. It's time to move forward. Max's body is obviously telling us that it's done as well.

I feel that the only thing holding us back from transplanting is that it's not convenient for the surgeons. Well, it's not convenient for me either, but I do it. I do it because I have to. It's not convenient for me to stop everything I am doing so that I can hook my son up to a machine. A machine that keeps him alive for another day. It's not convenient for me to have to take him to have a needle shoved into his arm every month. It's not convenient for me to have to hand him over to the surgeons for the 13th time. It's not convenient to have to change his clothes 3 times a day because his g-tube is leaking or because we can't find a diaper that will cover his vesicostomy. Life is not convenient for me either, but I do it.

But for now, I am DONE.
I apologize for not updating sooner. It has not been a good 4 days since surgery. Dialysis isn't going well to say the least. We are not sure if it's the catheter, the low volume that Max is on, or fibrin blocking the catheter.

Needless to say, we are frustrated, exhausted and done with dialysis. I don't have the strength to do this anymore. Max has only had one good night of dialysis since Friday. We have had to end his therapys early because of all of the alarms. I only have one more idea and that is to move the transplant up. Max can't keep missing full dialysis treatments. We are going in for labs today to see how bad they have gotten over the past 4 days. They didn't look great going into surgery, so I am very worried about what they are now.

I could rant and rave about how I am feeling right now, but I won't. We'll just keep it at this: I am on the verge of tears all day every day, I am exhausted, I hate dialysis, my faith is gone, and I am scared for my child's life.

Please pray. I don't have the strength to do so anymore.

June 18, 2010

Exhaustion

Everything with the surgery went well. The culprit was not anything on the end of the catheter, it was simply that Max has outgrown it. The catheter has been in place for two years now, so it makes sense. *Cheers to Dr. Lim for putting in a catheter that lasted so long*

Dr. Alonso ended up removing the old catheter and placing a new one. It's on the side where is g-tube is so it's a little crowded, but it will work. My only concern is going to be dressing changes with a leaky g-tube, but we will figure it out just like we have figured everything else out.

Max had the worst episode of breath holding that he has ever had. Once we got back to his room from the PACU, I pick him up from the gurney and he immediately started screaming. I quickly laid him in his crib and he started holding his breath. His eyes were huge and I immediately felt horrible because I knew that I hurt him. He held his breath to the point that his oxygen saturation drop to the high teens. They are suppose to be in the mid to upper 90's. He was as white as your computer screen. Naturally everyone, including Tim and I started panicking. Max ended up passing out on us 3 times. I was yelling at him to wake up, one nurse was trying to get his leads hooked up and the other one was shoving an oxygen mask on him. Someone in the hall was yelling for the resident and on the phone calling someone else. After a few minutes of this I finally stepped back into reality and realized that he was no longer pissed because he was in pain, he was pissed because they kept shoving the mask in his face. He hates that mask. I mentioned it a couple of times and no one really listened so I finally raised my tone a little and stopped the nurse in midair from putting it back on him. I calmly told her to not put it back on him. I asked if we could see what he did with just the nasal cannula and everyone agreed. Max immediately started calming down and within a minute or so his sats were back in the 90s. I feel terrible now on how I reacted to the nurse, but I had to do something because they were calling in the respiratory team and I was afraid they would intubate him. I totally understand why she was doing it and I told her that afterwards, but there is a time when you have to step back to figure out why the child is screaming. I did that and thankfully it worked. It was by far the scariest thing that I have experienced so far in this journey and I never want to experience it again.

Max was doing very well when I left this evening. He was living the life watching Barney and having his daddy drop water into his mouth from a straw. He was perking up and looking a lot better. The plan is to let him relax and heal for tonight and we will connect him to his dialysis for a few hours tomorrow to make sure there are no leaks. If all goes well, we will be home tomorrow afternoon.

As far as how Tim and I are doing- we are exhausted. Tim worked from 7am Thursday morning until 8am this morning. He only got an hour of sleep before I woke him up telling him that we were heading to the hospital and probably into surgery. Needless to say he took a 2 hour nap once we got situated into our room.

My exhaustion has finally caught up to me. I have been tired every day for the past month, but have kept going because I had to. I had a little man to take care of, but tonight, well tonight Max is in the fantastic hands of his nurse and daddy which means that I will have an uninterrupted night of sleep for the first time in a very long time. With that said...

Goodnight ladies and gentlemen. I will update tomorrow to let you all know how Max is doing.

Thank you for the prayers. They are greatly appreciated.