May 31, 2009

So far so good

I am probably going to regret writing this post, but I told you all that I would have an update in a few hours. Although most of you are probably out enjoying this gorgeous Sunday afternoon and not sitting waiting for me to update. But for those of you out there that are, Max's PD run is going great so far. We are about 4 hours into it and so far he is has a postive UF of 49mL. We have not had any alarms at this point and we're keeping our fingers crossed that we don't. If everything goes well tonight, it sounds like we will be dicharged sometime tomorrow evening after his hemo run. Of course, we have to have his oxygen, monitor and everything else lined up before we go, so we'll see how it all goes tomorrow. Either way, I am taking my son home tomorrow :o)

On top of the hospital stuff we have to get taken care of, we still have nothing ready at home to do his PD. We have to drag the machine out from where we threw a bunch of crap on it from the last time, make sure we have all of the supplies, get the supplies from me parents house. I obviously wasn't prepared because I didn't actually think this was going to work, but for once, it did. I guess I am paying for it now. Oh well, at least we have bought ourselves some time (fingers crossed).

Also wanted to let you know that an extra was done last night and Max's PD catheter is in the right spot and looking good but his hemo catheter is not. It is deep in the vein and starting to come out, so the surgeon (Dr. Tiao) said that we HAVE to make PD work because that catheter has to come out soon. Nothing like adding some extra pressure to what we already have.

Anyway, Max's 12 hours of PD will be up at 2:00am so please pray tonight that everything continues to go well and that we have nothing get in our way of running out the door tomorrow evening.

Enjoy the rest of your weekend!

Failure...yet again.

It has been confirmed that I officially HATE peritoneal dialysis. After two low drain volumes last night and having to bypass one of them they decided to stop the PD once again. The attending on this weekend predicted that this was going to happen considering Max has had dialysis now 5 days in a row and his little body is dry. It only makes sense that if you put fluid into a someone who is dry, the body is going to act as a sponge and absorb it. So what does this all mean? Max is NEVER going to get out of here! The doctors want to do another 12 hour run today to see how he does and too make sure that he can tolerate it (even though he proved that he can on Friday night). So I told them to start the PD while the doctors are here so that they can see how he does on it rather than them calling in and getting report from the nurse. They were concerned about his 100mL feeds on top of the increased volume of 220mL of PD fluid. So I came up with the brilliant idea of a continuous feed so that he isn't getting as much of a volume as a bolus. They agreed. So we are getting things ready to hook him up now.

They also said that they want to send him home on oxygen whether he goes home on PD or not. This TICKS me off to say the least. They are making this decision based on a sleep study that was done on him with 200mL of fluid pushing against his diaphragm. Max has proved for 10 months now that he DOES NOT need oxygen when he is sleeping. AGH! I am so peeved off at everyone right now. I know they just want to be sure but there are NO evidence that says that he needs it. It breaks my heart that I am going to have to torture Max with having to put a nasal cannula on him every night because of a study that didn't evaluate that particular situation.

I have planned on being here for another week although they say tomorrow. We were also told Saturday and then Sunday and now Monday. Just like when he was in the RCNIC, I'll believe it when he is sitting in our living room. We are all so bored, so it's making it very hard to entertain a 27 year old, a 25 year old and a 1 year old all at the same time.

I'll keep you all posted on how this run goes. We should know within the next few hours how things are looking.

May 30, 2009


We don't have official word yet, but I just spoke to Tim about how last night went. The diaylsis had one low drain volume alarm and that was on the first drain of the night, which isn't uncommon at all. He ended the treatment with a positive UF (meaing the machine pulled more fluid off than it put in). The sleep study nurse put a nasal cannula on Max that reads how much CO2 Max is putting out along with how much pressure is behind his breaths. They can also give him oxygen through it. So she turned the oxygen on at a 1/4 of a liter (which is VERY low) and Max kept his sats at 94-95% all night. He never had trouble breathing as far as retractions go. Tim said he looked very comfortable and slept well. Max woke up once to roll on his side and they had him to where he had to stay on his back, but other than that he did great considering he looked like an "ant" according to Tim.

We don't have the blood gas results back yet, which I am impatiently waiting to here, but overall I would say that last night went fantastic compared to Thursday night. Thank you all for the continued love, support and prayers. You keep pushing us to be the best that we can be and we are greatful for that. I'll post again this afternoon with more updates and hopefully the new and improved plan.

Enjoy your beautiful weekend!

May 29, 2009

On the Up Side of Things

Okay, now that I have scared everyone I have some things to report that are more on the up side of things. We are still not out of the woods as far as doing the transplant now, but I will explain everything in detail. I have to start with some very good news first though. Max had his scheduled hemo dialysis this afternoon. While we were there he fell into a deep sleep and didn't desat!!! He stayed in the mid 90s the whole time!!! Anyway, here we go...

After a lot of discussion between the doctors and then the doctors and I, I think we have a plan. They are going to check a blood gas now to see if Max is able to rid of the CO2 in his blood. This is basically to get a baseline for where he stands when he has a good oxygen saturation. They are then going to restart his PD at 6:00pm with a fill volume of 100ml (down from 180mL last night). If he desats with this volume they are going to give him the blow by and let him continue. They did a chest xray last night and that ruled out pneumonia, leaks and hernias. So they are comfortable letting him go with the oxygen. They are then going to do another blood gas at midnight. If this comes back good they are going to let him continue his treatment with the little bit of oxygen that he needs. They will then send him home with the low fill PD, oxygen and monitor. If the gas is bad they will stop the treatment and reassess our options if we have any left. If he doesn't desat at all, the will send us home on the low fill PD and a monitor so that we can keep an eye on him. The original plan was to discharge tomorrow after hemo, but they are going to keep us here until Sunday morning for an extra night of monitoring. Depending on how tonight goes will determine if they do the PD tomorrow night as well.

The bottom line is that the extra pressure in his abdomen is putting pressure on his diaphragm which we believe is partially collapsing his lungs, which in turn is causing him to desat. The reason we feel that Max couldn't keep his sats up after he came off of the PD is because it took his lungs awhile to expand. Max looks very comfortable and does not retract while this is happening. With that said, Dr. Dixon doesn't feel that Max's lungs are too small to support him alone, but when you add the pressure of a kidney or fluid they are too small. If we have to go into the transplant, Max will most likely be on the ventilator and then the nasal cannula for awhile.

Okay, so as I was writing this, pulmonology came in to see Max. Considering they have never seen him before and they just got his charts this afternoon, they feel that Max is not out growing his lungs. It's hard to say what the future brings, but they said they don't see a reason why he would. His lungs should grow with him and continue to produce air sacs as they should. He shouldn't be at an increased risk for asthma or allergies. So, basically he can live a totally normal (however you want to define normal) life with his lung volume. They are going to do a sleep study tonight to see how everything is working while he is asleep. They said that this will give them a lot of information to determine the future. They want to do it while he is on the PD since that is when he is having trouble. Dr. Ben just came in and said they are going to push him hard with the PD since he will be on all of the monitors (picture EKG times 10). They are going to do a fill volume of 200mL tonight so that they can get the best results from the study, so ignore the 100mL fill that I said before.

So to recap all of the mayhem from above:

PD tonight with a fill volume of 200mL (up from 180mL last night)
Sleep Study tonight while he is on the PD
Repeat gas if he needs it (the study will monitor this without the needle stick)
Oxygen will be given as needed (He will come home on it for when he is on the PD)
Hemo dialysis tomorrow morning

Overall a much better evening than morning. Everyone seems to be happier now that we have the lung experts involved. It seems that we have a plan in place, now we just have to hope and pray that it works in the way that we want it to.

I am personally feeling a lot better now that the experts told me that Max is not outgrowing his lungs, at least at this point. I will push that fear out my mind until I have to worry about (IF I ever have to worry about it). They did tell us that Max will never be a sports star (oh shucks) and that he will have to have a desk job (or be a doctor). We can live with that. I personally was going to make him live his life wrapped in bubble wrap and it would be hard to play baseball like that anyway. I would assume that golf would be okay. So, Dr. Ben may have a golfing buddy in a few years.

Anyway, I am absolutely exhausted from the last 24 hours, so I am going to go put my pj's on, grab me a bowl of ice cream and plant my butt on the couch and watch me a movie (if I make it through one).

We hope you all have a great weekend and I will let you know how the sleep study goes tomorrow.


Thank you all so much for your hard praying last night. Unfortunately, the PD didn't work at the volume they had him at. They had to stop the treatment half way through because of his oxygen saturation. The worst part is that my biggest fear came true. Max couldn't keep his sats up without having oxygen, which could potentially mean that he is outgrowing his lungs. I don't think I need to explain what that could mean.

The plan is to send Max home with oxygen and a monitor so that we can watch his numbers. Thankfully, he will only need the oxygen while he is sleeping. They are also going to contact pulmonology to see what their recommendations are and to possibly setup a consult with them so that they can take a look at Max. I am scared to death of what they may tell us. They are going to retry the PD this evening on a much lower volume of 100-120mL. If he tolerates that he will come home on it to start the stretching process. If he doesn't do well on it, they will be scheduling the transplant immediately. So basically, we have one shot and one shot only and that shot exploded in our faces last night. Dr. Dixon is also going to contact radiology and see if they can look at my angiogram to get an idea of what the volume of my kidney is. This will help them with seeing how well Max will or will not tolerate the transplant if we go forward with it now.

I would assume that it's safe to say that Max will definitely be on the ventilator for awhile after the transplant so that he doesn't have to work so hard with his breathing when he has a large new object in his belly. I would also say that he will be on the nasal cannula for awhile after he is extubated.

Needless to say, we are petrified. I am scared to death and have been crying off and on since last night. I find myself breaking down more when I am playing with him or holding him. When he looks at me and smiles I break down. I have no idea how much time I have left with my son. The fact that two of his doctors say that it's a possibility that he is outgrowing his lungs makes me realize that we may lose him. I hate that I even let that thought cross my mind, but how can't I? How can I sit here and be happy and positive when I am being thrown nothing but bad news? How can I have faith when not one thing since we have been in this hospital has been good news? Max is coming home on oxygen people! My little boy, who two days ago was fine, or so we thought, is coming home with oxygen support! How can one have faith or be positive?

I will say that it's encouraging that Max's sats are in the 90's when he is awake. Wouldn't someone who is outgrowing their lungs be desating all the time- awake or asleep? Dr. Ben disagrees with the other doctors. He finds it hard to believe. Most kids who's lungs aren't working need trachs, ventilators, etc. Max just needs a little bit of oxygen with a blow by (meaning a mask sitting above his head rather than a cannula in his nose). That's the one positive thing that's going for us. Dr. Ben also said that he feels that if we can get his phosphorus down and continue with hemo that we can buy some time. My only concern is that Dr. Dixon already mentioned to me that the other medication that we have to try and lower his phosphorus will only pull out what he is taking in and not what he is already holding onto. There is still a lot of decisions to be made, so I am trying not to jump to conclusions. Dr. Ben was just in his room and left to talk to Dr. Dixon. He said he will be back later with the plan. I 'll let you all know as soon as I do.

With all of this being thrown at us, I am being forced to think about the transplant, and to be honest, I am scared to death about the surgery. I knew that it was coming sooner or later, but I had faith that he would pull through until he was older. He has always fought and won. I am trying so hard to hold on to that and hope that he surprises us again. I haven't mentally prepared myself for this operation. This is possibly the biggest surgery of my life. I sit here and wonder, what if it something goes wrong? What if it's too much on his little lungs? What if I am sitting in my bed on a totally separate floor and something happens to him? What if he can't tolerate it and I am not there to hold him? I fear that I won't be able to be the super mom that I want to be. I am not going to be able to care for my child as he goes through the roughest time of his life. I am scared. I keep hearing that I can't think about the "what if's," but I can't not think about them. As much as the "what if's" scare the hell out of me, I think they give me strength to fight. Fight to heal faster, fight for Max, fight to be Super Mom. We will succeed. He will succeed. He is Super Man. He will win!

May 28, 2009

Please Pray Harder

Well we are here, settled in and hooked up. He was doing great and all of a sudden his oxygen saturation started to drop. We were told to watch whether it's happening in a fill, dwell or drain and to reposition him and raise his head up a little bit. He is currently sleeping with his head elevated on and draining and his sat is 94. He was sleeping and dwelling before when it was dropping. He will have to be watched closely and if he keeps dropping while he is in a dwell they will order a chest xray and probably stop it.

PLEASE PRAY HARD! It's times like this when my faith is truely tested, because I have been praying all week for this to work and so far it's not looking too promising. This HAS to work! He isn't ready for a transplant and this is basically the last option. Please, please, please pray for this to turn around and be a success.

I am going to try to pull myself away to get something to eat. I will keep you all updated on how the rest of the evening goes. He is due to come off at 4am if he makes it that far. I will post again tomorrow.

Please Pray.

May 27, 2009

We're going in tomorrow

To the hospital that is. Max will be admitted tomorrow at 3:00pm to restart his peritoneal dialysis for about the 8th time. The plan is to start him on 180mL of fluid for 12 hours. If everything goes well with that first run, they will increase his volume to 200mL for 12 hours for Friday night. If all goes well with that he will be discharged on Saturday after his scheduled hemo dialysis.

The hope is that he will come home on the 200mL for 12 hours prescription. This volume is a good volume for the stretching of his peritoneal cavity. They will keep him on this for a week or so and consider increasing the volume by 20mL once a week until they reach a goal of at least 300mL.

If everything continues to go well, they will slowly start weaning him from his hemo dialysis. It is all going to be a wait and see kind of game (we are very good at this game). They will be playing with his PD prescription if he isn't clearing his numbers with the decreased hemo.

Max's phosphorus is VERY high and has been for quite awhile now. If this number doesn't get lowered it could start calcifying Max's vessels. So I met with Dr. Dixon today to kind of go over the plan and this is what he came up with: If Max doesn't tolerate the PD from a lung standpoint. Meaning he is desating and needing oxygen or springs a leak somewhere in his body, then there is only one more thing that we can try to lower his phosphorus. This is another medication called Renagel. This is something that they have never tried before, but their hope is that when it gets mixed with his formula it will pull the phosphorus out of it. If this doesn't work, they will have to transplant. He can't go on too much longer with that number being so high.

Dr. Dixon is optimistic that PD is going to work this time. Unfortunately, I am not too convinced at this point. I hate to be negative, but we have had nothing but bad experiences with it and I am very nervous about it. I am petrified that he isn't going to be able to handle the added pressure in his abdomen and his little lungs are going to struggle. Which brings on even more worry, that I don't even like to think about, let alone write about on here.

Max has also been running a low grade fever (99-100.3) since Sunday morning. We are blaming them on his forth tooth that is trying to pop through. But today he started having higher ones (101-102.3), so of course they doctors ordered several cultures. They took blood, PD fluid and I asked for a urine sample to rule out a bladder infection or a UTI. He has been sleeping since we left the hospital this afternoon at 4pm.

I am awful when it comes to giving up my control to the nurses when we get admitted to the hospital, so I am not looking forward to this at all. I get frustrated with the monitors alarming at me because they're not picking up a heartrate or because it's reading that his heartrate is too high at 150 bpm. I get very frustrated when his feeds and meds are late and get off of our daily schedule. It drives me crazy that I can't get into the cart to get out his meds to give them to him or that we can't use our own feeding pump. I get frustrated when 3 different doctors come in at three different times starting at 5:30am to do the same things. They wake Max up to the point that he is fussing and leave him that way. I hate loosing the control of taking care of my own child. So, here is to patience. Patience and self control. Please God give me the patience to be able to do this again.

Prayer Request:

Please pray that everything goes well with the restart of the PD this week. Pray that Max tolerates it and that we can get him transitioned onto it to buy us a lot of time before having to do the transplant.

Please pray for Max's phosphorus to come down and stay down with the PD.

Please pray for Max to start feeling better and for something to show on his cultures so that we can treat it and move on.

Also, please pray for Tim and I that we have the strength and the patience (especially in me) to get through the next three days in the hospital.

I will keep all of you posted on how all of this goes. Oh! Please pray for success. We need this to work, for Max's health, we need this to work. No pressure.

May 24, 2009


...for being a very bad blogger. I haven't posted anything and it was a very big week of small and big updates about Max.

We'll start with the small. Last week was full of appointments:

Monday- Max had his PD dye study. Everything looked great and the fluid stayed where it was suppose to! He also had dialysis and that went well too :o)

Tuesday- Max had his physical therapy and then we headed to his one year pediatrician appointment. He got a clean bill of health :o) and three shots :o( He did well, but definitely wasn't happy about getting them.

Wednesday- Max had to see a psychologist as part of the transplant work up. I guess he passed :o) He asked me the same questions that was asked during my psych evaluation. A pretty silly appointment. Max then went to dialysis and did well :o)

Thursday- Max had speech therapy and did fairly well with it. We figured out that he needs to be in a 45 degree angle instead of 90. He doesn't gag at all when he is laying back a little. After therapy he had a follow up with the High Risk Clinic. Dr. Cahill is happy with how things are going except for his length. She is going to talk to nephrology about increasing his protein, but nephrology is talking about decreasing it, so we'll see who wins this one.

Friday- Max had to be at dialysis at 8:00am for a PD trial. It went okay in the eyes of nephrology, but I didn't think it went so well. He had two cycles and both of those cycles had low drain volume alarms, which means the machine didn't back the fluid that it put in him. This worries me since he ended up with a chest tube because of this. The doctors don't seem worried yet, so I am trying to keep my cool. Overall though, he tolerated it just fine. He then had his hemo right after. Then after a long day, Max needed a dressing change. That is when we found out that his catheter came unstitched again. So we had to wait for the surgery resident to come up and restitch it. Thankfully, she was pretty quick. The look of fear and pain on his face as he stared me in the eyes was heart breaking. He did great though. After we dressed his catheter and stopped holding him down, he was all better. Finally, after 8 hours we finally left the hospital and spent an hour in the wonderful holiday weekend traffic :o)

Saturday- Dialysis with Daddy

Sunday- Mommy and Daddy are going to a wedding tonight, so Max will be getting his first "away from home" babysitter. He will spending the evening with his Nana and Pipi.

That is it! Phew... can I say CRAZY week!

As for the bigger news of the week. It looks like they will be admitting him into the hospital this coming weekend to restart his PD. NERVOUS!!! Please pray that everything goes well and Max doesn't spring a leak anywhere else in his little body.

Also, please pray that we don't loose his hemo catheter. The surgeon really doesn't want to replace it which makes me fear that we will be forced to tolerate PD.

As far as even better news, Daddy is giving me the day off tomorrow, so I don't have to go to the hospital until wednesday!!!!

Emjoy your Memorial Day everyone!!!

May 20, 2009

Good Old Henry Boy

This is Henry at Max's Birthday Party on Saturday afternoon.

My mom and dad unfortunately had to put our childhood dog down on Monday morning. Henry was a 14 1/2 year old basset hound who slept 23 hours a day. He loved walks, car rides and going camping where he then enjoyed boat rides. His big floppy ears would blow in the wind as he stood at the front of the boat.

We found out Henry had a tumor in his belly, so my parents decided to make him comfortable until the time came for him to go. That was a year ago. Proof that Henry was a fighter :o) Last Friday they had to take him back to the vet because he wasn't acting right. Again, they decided to keep him comfortable with steroids. Sunday night he started vomiting, moaning and groaning, and was unable to get up. My parents decided then that it wasn't fair to him to suffer like that, so my dad took him in on Monday morning.

My dad and Henry were the best of buds. Wherever dad was, Henry was. It's funny that dad was the one who would NEVER let us have a dog as kids. Once he finally caved in, he fell in love with the spunky, floppy eared dog that everyone grew to love.

We love and miss you Henry. Rest in Peace buddy!

May 19, 2009

Birthday Party was a Success

After several months of planning and a lot of rain on Saturday morning we can officially say that Max's First Birthday Party was a success. We had a great turn out and it seemed that everyone had a great time. It ended up raining for about an hour, but we got through it and continued with the party :o)

We were blessed to have both of Max's nephrologists come, along with 4 of his nurses from the RCNIC. What an honor to have them to celebrate with us and Max.

Of couses I was too busy running around and didn't even get my camera out of the bag, I was wondering if anyone got some pictures if you could send them to me. I would appreciate it :o)

I will post a video from the party soon. Stay tuned!

May 15, 2009

please Pray

My cousins Chris and Jessica are expecting their first baby and just found out earlier in the week that the baby's bladder is full and that her amniotic fluid levels are low. These are two of the problems that Max had while in utero. The positives are that she is at 35 weeks so the baby's lungs will developed enough if they decide to take him/her early. Also, the kidneys look fine. There isn't any fluid backed up into them (which is what caused Max's kidney failure).

They have a level two ultrasound this afternoon at 1:00 to take a closer look at the baby's bladder and to see if they can find where the blockage is.

My heart is aching for them because I know how scary it is to sit and wait to find out what is going on with your unborn baby. I am so scared for them, but I have faith that everything is going to be okay. Please pray for them today that they will figure out what is causing the backup and that Chris and Jessica find peace in the findings and stay positive. It's so hard to go through something so scary, so please keep them in your prayers and close to your hearts today.

Thank you :o)

May 12, 2009


On May 12, 2008 Max came into this world fighting for his life. Here he is, one year later showing the world that he did it. He won. He beat the odds. He proved to the doctors that didn't believe that he would make it wrong.

May 12, 2008 was the happiest and the scariest day of our lives. At 9:52am, Max entered this world with a faint little squeal of a cry. It wasn't a strong cry, but to us it meant life. A little boy that is the strongest person we know came into this world after everything that he had overcome before he was even born. A little boy came into this world to prove to us that miracles do happen.

It has been a year of miracles, struggles and tears. It has also been a year of smiles, laughs and milestones. It has been the best year of our lives. When Max came into this world, we had know idea how much time we had to spend with him. The doctors didn't think he had a good chance of survival. They prepared us for the worse, but we never gave up hope for the best. He proved to us that miracles do happen. He beat all of the odds. He fought through them and he continues to fight every day. His strength and determination amaze us every day.

Max is our hero. We have never looked up to anyone the way that we look up to him. He is our life, our son. We are so blessed to have him in our lives. He has made us realize what really matters in life. He has made us realize how precious life is. Every breath. Every tear. Every smile. It's the small things that lead up to the big things in life.

Today is a day to not only celebrate Max, but to also celebrate the people that have gotten him this far.

The first group that deserves recognition are the fantastic nurses in the RCNIC. We can't say enough about them. Max spent those first 6 months of his life with the same group of primary nurses. They are Max's adoptive mommies and we will never forget any of them. Thank you ladies for all of your hard work and dedication on getting Max healthy and home to us. Max will know about each and everyone of you. You will always play a big part in his life.

The next group are his doctors. I have never seen so many fantastic doctors in one place before. There are too many doctors to mention in this group so I will focus on his primary ones. First off, is his high risk doctor from the RCNIC. Dr. Cahill NEVER gave up hope on Max. She always told us that he was the cutest baby in the RCNIC. She also told us that he was the toughest. I remember hearing her tell someone, "Max, Max he's our man... if he can't do it no one can!" She is a wonderful, wonderful person and we are so blessed to have her in Max's life. The next one is Dr. Sheldon. This is Max's urologist and future transplant surgeon. He is recognized around the world for his work and we too are blessed to have him taking care of Max. Most importantly though are Max's nephrologists. This group of people work very closely together, so there is a large number of them. Dr. Dixon and Dr. Ben are his primaries though. They deserve the most recognition for the hard work that they put into Max's care. I am sure that Max has caused them several headaches and head scratches. Max likes to give these guys a run for their money, but they never give up on him. I can't say enough about these two. They are fantastic. We're so, so, so lucky to have them. I am going to put the dialysis nurses in this group as well. Sometimes we feel that they are his doctors when his doctors aren't around. They are educated and dedicated to their work. They never show stress although I am sure that Max can stress them out while he is on his dialysis. I don't know what we're going to do without them once he receives his kidney. Lots of visits that's for sure.

The final group is Max's family and friends. They have stood by us every step of the way. Bringing us meals, prayers, support and love. All of you are the most important people in our lives. We wouldn't be where we are today without any of you. We love and cherish all of you very much.

Thank you everyone for helping us get Max to where he is today.

Happy Birthday buddy! We will always be here for you Max. Never forget that. Mommy and Daddy love you very, very much.

May 10, 2009

Happy Mother's Day!

Happy Mother's Day to all of you fantastic mothers and mother-to-be's! Enjoy the beautiful day.

May 6, 2009

What a champ!!!

Max ate his entire feed from his bottle this morning!!! How stinkin cool is that? Well... I am excited!

I have a few new things to report on. First one is Max's BUN (Blood Urea Nitrogen). It has been very elevated pre dialysis, so the doctors were starting to wonder if his catheter was recirculating. Meaning that he was only getting a small volume of his blood cleaned due to that small amount of blood recirculating in the catheter. Does that make sense? If I had no idea what I was talking about I wouldn't get it either. I am trying to think of how to explain that better and I am coming up with nothing, sorry :o(

Anyway, they tested to see if this was the case on Monday and thankfully it isn't. If this was the case, he would need a new catheter. What they think it is, is that since Max has grown a LARGE amount in the past month he has officially outgrown his kidneys. Although this is a bad thing, it was too be expected. So, how do we fix it? They add time to Max's dialysis treatment. So instead of 2 1/2 hours, he is on for 2 hours and 45 minutes. The bigger he gets, the longer he will need to be on the machine.

Max has been gagging with his puree feeds, so his speech therapist has ordered for him to have a swallow study done. This will take place next Wednesday the 13th. I'll keep you posted on the results.

He will also be having a nuclear medicine dye study done to see if he has any leaks into his lungs or scrotum. It's basically to make sure that everything is healed up from his diaphragmatic hernia repair. If he is leak free, they are going to let him enjoy his birthday party and then admit him to do a PD trial to see if we can get his peritoneal cavity to stretch in preparation for the transplant. We are hoping that he will be able to tolerate it enough to get the volumes that he will need to be able to use that as his dialysis as well. I am very nervous about this. I know that it's been almost 7 weeks since the surgery, but I am still nervous that he still needs time to heal. I am also nervous because it has been so long since I have done the PD at home. I am going to need a refresher training session.

Let's see.... I have finally chosen my surgeon that will be doing my part of the transplant surgery. His name is Dr. Tiao (pronounced: T-ow) and he is fantastic. He put Max's current hemo catheter in 6 months ago and it's still working :o) (It may be sluggish, but by golly it's still working). With that said, I have a feeling that he isn't too far from having to have a new catheter put in. It's too be expected, but I hate to see him go through another surgery. This one will more than likely have to go into his subclavian vein, which will eliminate that one for future dialysis use if he is to need it (chanced are he will). It's a bummer, but we can't look that far into the future at this point. We need to focus on getting him to the future, so we will deal with that when/if the time comes.

Anyway, I think that is it. 6 more days and our little boy will be ONE!!!!!

May 4, 2009

Link to Professional Pictures

Hello everyone!

I wanted to post a link to the professional pictures that Sara Streit ( to take of Max.
Album ID: maxlivingston


May 1, 2009

Update on Larry

Well Larry is doing much better today. They ran a few tests yesterday and everything looked good. We are being told that it's possible that scar tissue from his previous surgery could have caused the seizure. If this is the case, we are assuming that he will have to be on his antiseizure medicine for the rest of his life. We are just lucky that he is alive, so what's an extra pill each day?

As far as the Yukon goes... it's looking like it may be a total loss. We haven't heard anything on it yet, but it looks pretty bad. There were not any other cars involved in the crash (except for someone who was rear-ended for looking at the crash). He was on the AA and went off the side of the road and ran into a concrete wall. When the good samaritan that stopped after the crash got to him, he was still seizing. He then blacked out. He woke up enough to tell the EMT that he had had a brain tumor and he then seized again and blacked out.

We are hoping that he will be discharged from the hospital tomorrow and they will then run more tests on him as an outpatient. Please continue to keep him in your prayers as he goes through all of this again.

On a side note:

I had my second TB test on Wednesday and I had another positive reaction to it. So, they will be putting him on a medication to prevent me from getting it when I am old and gray. There was questioning of whether or not I would still be able to donate my kidney to Max and after a call to one of the nephrologist he said that "in the official transplant guide" I will still be able to donate. What they will do is treat him with the same medication that they will be treating me with after the transplant. PHEW... I was on the brinks of tears during the time when I didn't have an answer, but I am much better now :o)

As far as Max goes, he is doing very well. We have nothing but good things to report. First of all I am VERY happy to say that he said "mama" for the first time yesterday. Even more importantly though Max took a bottle for the first time on Wednesday morning! He continued to take it throughout the day. He has only taken water from it so far, but we are working on getting him to take his formula from it. I personally wouldn't drink this stuff either, so I am happy enough with juice and water. WOO HOO!

Max has also been fighting an ear infection and fevers since last Sunday. He is finally fever free and doing much better. I never thought a baby could be SO fussy :o( He is getting back to his normal happy self though.

He had his follow up urology appointment and Dr. Sheldon doesn't need to see us again for 3 months!!!!! This was a HUGE shock to me, but I am thrilled. Unless something comes up, we don't need to be seen but every 3 months until it's time to do the transplant. HOLY COW... the next step (from a urology standpoint) is transplant. Granted, we are still waiting for him to grow, grow, grow. So as long as his dialysis continues to be adequate, he continues to grow and develop we are hoping to wait as long as we can. They will be doing a nuclear medicine dye study next week to check and see if everything from his surgery is healed. If all looks good they will admit him back into the hospital (after his birthday, of course) to retry the peritoneal dialysis to try and stretch his peritoneal cavity. We are finally on the road to good things. Pray that we stay on this road and that everything continues to go well for him. He deserves this. He deserves a break.

Okay, I think that's it. Everyone enjoy your weekend! We'll talk to you soon :o)