March 31, 2009

Max Update

Sorry for the long wait for an update on Max. It was been a very looooooong 8 days since Max was admitted last Monday. I don't know how we did this for 6 months straight. I am going insane!!!

Unfortunately, I had to start getting a little nasty with some people to get things moving around here yesterday. There were orders put in on Friday to start weaning Max from his oxygen and no one ever did it. So I took it upon myself to do it at dialysis yesterday and I was successful. He is still pretty junky and has a yucky cough that makes him desat a little, but he is able to bring himself back up without the oxygen. There was also talk about starting him on an oral antibiotic on Saturday but the orders were never put in. I could go on and on. So when we got to dialysis I let loose with Dr. Ben about what was not happening that should have been happening. Being the great doctor that he is he got on the phone and amazingly things started happening. Max will be starting his oral antibiotic today!

Everyone was on board last night to discharge Max today. Urology came in this morning and said we're good to go, a surgery resident came in and said we're good to go. The brakes were put on when the surgery nurse practitioner came in and said not until tomorrow morning. I voiced my opinion and simply said that we were going to be coming back in tomorrow morning for dialysis so they would check him out then. So I won. I hope we made the right decision. I just feel that we will ALL feel better if we go home and get a good night sleep. We are running on 8 days of not so good sleep and I can't take it too much longer.

Please pray that everything goes well when we get home. Pray that the oral antibiotics and the IV antibiotics that he will receive through dialysis will kick the "pneumonia" in the butt.

March 29, 2009


That is the final headcount of how many people came out to support Max. It was the most amazing and overwhelming experience Tim and I have ever been through. We are so thankful and blessed for all of you that came and for those that didn't make it, but donated money, items or services.

It's amazing to us that so many of you have only heard of Max. Whether it be through the email chains, the blog, prayer chains or just by seeing the flyers around town. To come out and support a 10 1/2 month old that you have never seen or met blows us away. The gratitude that we feel in our hearts is overwhelming.

I was telling someone last night that with all that has been going on over the past week with Max's surgery and fevers, that I was starting to feel a little down. Getting to finally meet some of you and seeing 776 people come and celebrate my son's life gave me the boost that I need to continue on with this amazingly hard and rewarding journey.

We are also very happy to report that as of 8:00 last night, Max has not had any fevers!!! I personally feel that all the love, support and prayers that were floating around that gym last night brought Max good health. If he remains fever free for 24 hours on his new oral antibiotic he can come home. The doctors are shooting for Tuesday. Pray, pray, pray!

Again, we need to thank the amazing people that got this event together. You guys are absolutely amazing and we are very blessed to be able to call each of you family.

THANK YOU! THANK YOU! THANK YOU! We can't say it enough. THANK YOU!

March 27, 2009

104 degree fever

Max isn't going to be coming home tomorrow. He has been running some pretty high fevers since surgery and all of his cultures are coming back negative. He spiked a 104 fever this afternoon and they are still working on getting it down. He was shivering, his little lips, hands and feet were all blue. I felt awful for him. Then he started smiling and saying "dada." Why is it that my child smiles and talks when he has a 104 degree fever. I don't think that's normal! Anyway, they had cold rags on him along with a cooling blanket. Tim is with him tonight so I am not too sure what his temp is currently, but they had just given him more Tylenol which makes me think that it's still high. Some of the doctors are thinking that it's pneumonia, but others aren't convinced. I guess we just sit and wait to see if anything grows on the cultures. I will keep you posted on what the next steps are and if we figure out when he will be coming home, but they did say that it won't be this weekend.

They do have him on so pretty strong antibiotics to cover their basis. Something is obviously causing these fevers, so they are trying to attack it from all angles.

Please pray that Max's fevers go away, even if we don't figure out why he is getting them, pray that they go away.

Enjoy your weekend everyone!

March 26, 2009

Bittersweet News

I am going to start this post by saying that Tim and I are overwhelmed by all of your support and generosity. Unfortunately, I just got a call from one of the team members for Max's benefit saying that we are at our maximum capacity for the gym. We were told by our contact person at Bishop Brossart High School that we have to stop all sales of presale tickets and unfortunately we will have to turn away anyone that comes to the door the night of the event that hasn't already purchased a ticket. The reasoning behind this is plain and simple, it's just not safe to pack anymore guests into the gym and cafeteria.

2 months ago we would have never guessed that one little boy would draw so much attention. Obviously, or else we would have booked a much bigger hall :o) It is so hard for us to have to turn guests away, but please know that we appreciate all of you for what you want to do for Max. He is obviously very special, not only to his family, but also to our local and distant communities as well. We thank you all for that!

Again, we are deeply sorry that this bittersweet problem has occurred, but for the safety of the guests, we must put this into action. If you know of anyone who was planning on attending Max's benefit that has not yet purchased a ticket, please let them know that it is sold out. It is so bittersweet for us. We are so happy that 750+ people are going to be coming to celebrate Max and to help us, but it is so sad that some of those people will not get that chance.

God Bless all of you for your continued love, support, and generosity for the little miracle that most of you have never met. We greatly appreciate each and every one of you.

The chest tube is out!

Someone from surgery came up around 2pm and took Max's chest tube out. After a few minutes of fussing, he started to look better. He just looks a lot more comfortable overall. He has been awake since 8:00 this morning. He is exhausted, but not interested in sleeping. He has been talking a little bit and smirking. We don't have the full blown smiles yet, but he's definitely getting there. The only downfall of the chest tube coming out is that they will be moving us to a regular floor if the followup xray this afternoon looks good. We LOVE that Max has one on one attention while he is here in the ICU. We don't feel comfortable at all leaving him alone while we are on the floor. There is nothing that we can do about it though, so we just have to live with it.

Max is still on the nasal cannula, but they are hoping to start weaning him off of it shortly. He is only on 2 liters of flow, so it's not much at all. His sats are 99 right now, so I think he will do well with it if they move slowly. His surgeon said that tomorrow would be pushing it for discharge, but he feels that Saturday would be fine as long as we can get him off the oxygen and if he continues to do well with his feeds.

I think that is it. Things are definitely slowing down around here and he is a lot more comfortable this afternoon as compared to this morning.

Please pray that the xray this afternoon shows an inflated lung so that they don't have to put that tube back in his chest.

Talk to you all soon!

March 25, 2009

Detailed Update

Okay, sorry about the brief update last night. We were so exhausted and didn't have the energy to write a book at the time. So here we go...

After an hour delay on the surgery time, Max went back to the OR. We were told they would call out when they got started with the first procedure. An hour later we finally got that call. It took them a very long time to get his two IVs, arterial line and intubation tube started. So, about two hours later we got word that the vesticostomy procedure went well. Dr. Sheldon is confident that he did the right thing rather than reconstruct the bladder. He said that if we had to do the transplant now, that the kidney would not have fit if he had reconstructed. Although it's not the way you want to transplant we are happy that he went with his guy feeling. I also asked him if Max continues to do with with dialysis, whether it be PD or hemo, would he consider doing this the right way and go ahead with the reconstruction and then the transplant a few months later and his said absolutely. He doesn't want to transplant into a vesticostomy if Max is big enough to go through the reconstruction before hand. He wants to do this the right way if he can.

3 hours later we finally got the word that Dr. Lim was finished and ready to go over the diaphragmatic hernia repair. He met us in the little conference room and told us that everything went well. Dr. Lim was trying to do the procedure laprascopically (I have no idea how to spell that), but Max wasn't handling it well, so he ended up having to do it open. So the incision is a lot bigger than what it would have been, but you gotta do what you gotta do. He also informed us that this hernia WAS indeed caused by his nissen. That is relieving to know that it wasn't something that he was born with. All I can say is that that nissen has been NOTHING but trouble for him.

Max was able to be extubated, which everyone was VERY happy about. I though for sure, since they had to collapse his lung, that he would come back intubated. He is on the nasal cannula, but that's to be expected considering the trauma he just went through. He is on a continuous dose of Fentanyl which is helping him stay comfortable. He has had several pretty high fevers, so they went ahead and cultured everything just to make sure that he doesn't have any infections. They already have him on an antibiotic to treat anything that may be brewing. He has a chest tube, which just looks flat out uncomfortable. We all think that once he gets that out he will feel a lot better. We can't hold him while he has it which makes this so much harder on Tim and I. He is somewhat awake watching cartoons, but starts fussing as soon as anyone walks into his room and looks at him. He even kind of fusses when I go to talk to him. He just wants to be left alone right now, so we are granting him his wish.

Max got a visit from several of his RCNIC nurses last night. Max was miserable so it wasn't much of a visit for him, but it was so nice to see them.

Ummmm.... I feel like I am missing a lot of information. If I think of anything else I will let you all know. I want to also thank everyone that is planning on coming to Max's benefit this Saturday. Tim and I are overwhelmed by all of the donations and presale tickets that have already been sold. It's wonderful to see how many people will come out and support a little guy that most have never met. We feel so blessed to live in such a wonderful community that is willing to help one of their own. Thank you to all of you for your support and generosity.

Also, we have no idea how we are going to thank these following people for all of their hard work and planning for this big event. They have done a fantastic job with it. Thank you SO, SO, SO, SO much to the following:

Jessica, Chris, Tony, Debbie, Larry, Judy, Lori, Scott, Rick, Allie, TJ and Dominique

You all are WONDERFUL!!!!

Enjoy the rest of your week everyone!

March 24, 2009

Surgery was successful

Okay, this is going to be very brief because I am so stinkin tired I can't see straight, but I promised an update on Tuesday night, so here it is...

After 5.5 hours of waiting we finally got word that everything went well. Max was able to be extubated before he left the OR. He is in the ICU for the monitoring. He has a chest tube and IS NOT happy about it. He has been VERY fussy and uncomfortable but we were finally able to get him comfortable enough to fall into a deep sleep. After a very hard decision making process, both Tim and I decided to come home to try and get a good nights sleep. We figured since he is one on one with his nurse that tonight may be our only chance to sleep at home.

I will update with a lot more details about the surgeries and the plan tomorrow after I've had me some good ole sleep :o)

Goodnight, sleep tight!

March 22, 2009

Video and Pictures

2 surgeries, 13 weeks of bedrest, numerous tests and needle pricks and this is all he has to say...
...although it is SO cute to hear him say it

Max's first walk outside

Max's first trip to Newport on the Levee for Uncle Tony's 30th birthday dinner. Doesn't he look so stinkin cute in his hat?

Enough said

Get Your Presale Tickets

Happy Sunday everyone!

I just wanted to remind everyone that is planning on attending the benefit next Saturday (the 28th) to get your presale tickets. All the information is the the right of your screen. We are trying to get a head count for the caterer, so if we could get the presale tickets sold that would help us out with that number.

Like I mentioned in my previous post, Max and I will not be able to attend the benefit. Tim will be representing our family. There is a possibility that someone will come relieve me and let me come up to greet everyone and to grab a bite to eat. It is all going to depend on how Max is doing and if I am comfortable leaving him. I just want to thank all of you who are coming and supporting us. We greatly appreciate all of your support and generosity. We will never be able to repay you, so please know that we appreciate all of you.

With that said, we still need your continued prayers for Max's surgery on Tuesday morning.

Enjoy your week!

March 19, 2009

Surgery is Scheduled

ERRRR! I am so frustrated! They scheduled Max's surgery for this Tuesday at 7:30am, which means that myself and Max will most likely NOT be at the benefit. He will be in the hospital for about 4 days which would mean that he wouldn't be discharged until Saturday. Even if they would discharge him on Friday evening, I don't know how comfortable I would be taking a post op baby somewhere with so many people and germs. ERRRRRR!

They said that the next possible surgery date would be April 7th and "that's three weeks away from now and that could be three weeks of healing time for him." ERRRR!

Tim will be there representing our family. Max and I were looking forward to being there, but please know that we greatly appreciate all of your support and prayers.

I will keep you all updated as new information arises. I am not sure if it will be before his surgery, so I will post something probably Tuesday night to let you all know how he is doing.

Please keep Max in your prayers that he pulls through this once again. This will be surgery number 10 and 11 for him (hernia repair and vesticostomy). It doesn't seem fair does it?

Enjoy your weekend!

Hernia Upate

Alright, after a VERY long 5 hours in the radiology waiting room, we found out that Max has a diaphragmatic hernia that consist of his large and small bowel. It is slightly restricting his right lung from fully expanding. We also found out that it has nothing to do with his prior surgery when they put the nissen in. It's something totally different than that. Some of the doctors believe this some of them don't.

So, the plan is that Max has to have another surgery. It's looking like it will be in early April, but they are still working on getting it scheduled. Max's urologist is also planning on putting his vesticostomy back in at the same time so that he only has to go through anesthesia once. After the surgery, Max will go to the ICU with a chest tube for a few days. He doesn't think he is going to do bad coming out of the surgery, but he wants him to have the constant monitoring that the ICU will provide. They have to put the chest tube in because they will be going through his chest cavity and will have to fill it up with air, so that is to remove the air and any fluid that may collect post surgery.

Nephrology and urology also had a meeting yesterday to discuss the plan. I am taking this part day by day or else I would go insane. In a nutshell, they are going to place the vesticostomy and give that and the hernia time to heal. After this time period passes they will readmit him to the hospital and retry the peritoneal dialysis. If it works- great! If it fails we have to pray that hemo continues to work. The goal is to still get him as big as possible before we have to the the transplant. They want me to continue on with my testing just in case we have to move to an emergency transplant.

I think that's it. Have a great weekend!

March 16, 2009

We went to a baby shower this past weekend for a friend of mine from high school. Her brother-in-law shot these beautiful pictures of Max.


March 13, 2009

Well the one week that my son is featured in the Alexandria Recorder I don't get one on my driveway.

Does anyone have one that I can have?!?

Thank you everyone!

March 10, 2009

Max is in the news!

There is going to be a story in the Cambell County Recorder this Thursday featuring Max and the upcoming benefit!

Here is a link to the online version:

(sorry I can't get it to be a clickable)


March 9, 2009

We're home

and very exhausted! I came home, sat down on the couch, and don't remember for the two hours after that. Tim supposedly left and I had no idea. He told me he'd be right back, but I don't remember any of it. We supposedly had a conversation, but I don't remember. Thank goodness Max was asleep as well... my goodness. I can only imagine how that would have gone :o)

Anyway, I am sort of awake now, but am headed off to bed. We'll talk to you all at a later date :o)

Goodnight and sweet dreams!

(Thanks Dr. Ben for letting us go home)

Things are going much better today

I may regret saying that considering we haven't received the discharge papers yet. Anyway, last night went just how I predicted it to go. Max kept desatting and slept with an oxygen mask in front of his face all night. So this morning we knew we weren't going home today. His SP tube also came unstitched last night so that had to get stitched back in... he was not too happy about the burning numbing medicine they injected him with, but he did fantastic otherwise.

They took us to dialysis early and we met up with the doctors there. They told us that they felt the added pressure in his belly pushed on his diaphragm and enabled his lungs to expand to their full capacity, so that had a lot to do with the drops in his sats. The hernia is also a probable cause of it. There is a call into the surgeons to see what they think and if they feel it needs to be fixed sooner rather than later. They wanted to see if getting the extra fluid off through his hemo dialysis would help with his sats when he is sleeping. So the entire time he was hooked up he was at 98-99% (which he still is at this very moment). When we got back to his room he fell asleep and I sat next to him with my eyes fixated on the monitor the entire hour. He never dropped below 95% but averaged at 96-97%. WOO HOO!!!

We were told if he behaves and doesn't go below 92% that they would feel comfortable sending us home this evening. So we're hoping and waiting patiently for the word and those lovely papers telling us we're FREE!!!

We also had a very uplifting conversation with Max's primary nephrologist, Dr. Dixon this afternoon. I'll skip through the medical portion of the conversation and get to the uplifting part. He told us that he is going to fight until the end and that he has faith that we're going to get Max through this. He also said that when he receives Max's high school graduation announcement, he is going to look back on this and remember how much of a pain it was and that it turned what hair he has left gray, but look at where he (and Dr. Ben) got him. One of my fears is that the doctors are wondering how much more we will put him through, but Dr. Dixon said that he is on the same path we are on and that we are a long shot from the end of the road. This isn't over yet. Of course, as soon as he left, I teared up and realized right then and there that we picked the absolute best doctor for our family, not that I ever doubted it, but he has the exact attitude and passion that we need to get ourselves and our son through this with the best possible outcome.

March 8, 2009

Things were too damn good to be true

Well of course, NOTHING ever goes our damn way. Every time Max falls asleep his oxygen saturation drops into the mid to upper 80's and supposedly into the 70's at one point. So, the doctors are thinking that the finding of the new hernia is the culprit. They have stopped the peritoneal dialysis to see if he does it overnight, which I am pretty confident he will since he has been doing it all day while not on dialysis. It looks like we won't be getting discharged tomorrow morning like originally planned if this does happen.

They are also wanting him to see a pulmonologist and I am petrified of what he's going to say. My absolute BIGGEST fear that I live with in the back of my head every day is that he is outgrowing his lungs. It's times like this that make that fear come alive and haunt me until the problem is resolved. I just can't even stand to think about it.

There is discussion between Max's surgeons, urologist and nephrologist that they will probably be going in to fix the hernia so that it can start the healing process. I have heard that it will be months before they will be able to restart PD after the repair for the sake of it breaking through the stitches into his pleural cavity.

The positive thing is that we know he can tolerate PD. The bad thing is that we can't use it as a secondary dialysis until the hernia repair heals completely. So now we are on pins and needles that his hemo cath stays working.

I don't know what else to say besides that I am so freaking tired of this crap happening to him. I am emotionally and physically drained and don't know how much more I can take. I haven't slept in 3 days and there's no point in going home to sleep because I wouldn't be able to tolerate not knowing what's going on here. I wish we could fast forward to five years from now and have all of this behind us. Although I am starting to think that this will NEVER be behind us. I feel like we're being punished for something but will never know what it is. It's one thing after another. Will he ever be able to live his life without being hooked up to tubes and wires or have to be in and out of the hospital or count down the days to his next surgery? Will we have to celebrate his first birthday in the freaking hospital? How do you plan such a huge celebration that is 2 months away when you don't know what the heck is going to happen within the next 24 hours?

Thanks for letting me vent. I'll be better as soon as we get some more information tomorrow. I get like this every time we get more bad news. I then have to sit on it for a day and I think about the positives and then I get better. The one positive that we got out of this is that they found the hernia. We also wonder if he has been desating for awhile now and just never knew it. So that's another positive. We're so thankful that they found these things before it got REALLY bad, but so mad that they keep finding more things wrong with him. We also know that, so far, all of the findings are fixable, but at what point will he say enough is enough? We know that he is such a fighter and won't stop without a fight, but it's so hard to see your baby go through such horrible things. He is so much stronger than his mommy and daddy, that's for sure.

Please keep him in your prayers. Have a good week everyone.

March 7, 2009

Day one was a...

...SUCCESS! Dr. Dixon was doing "cartwheels" after he heard how last night went. Max handled everything very well and the chest xray showed NO fluid around his lungs, BUT it did show something. Max can never let anything just go fine and dandy, so he decided to push a piece of his bowel into his chest cavity. The surgeon said that he thinks it probably happened when the nissen was performed. As that hole was healing after the last PD run, somehow a loop of bowel got up in there and it healed that way. So, the doctors are going to continue with the PD trial, but be a little more cautious on the volumes that they put in there. Dr. Dixon said that it is something that will have to be fixed at some point, but as of right now it's not causing any trouble so they're going to leave it be. If they end up having to fix it now, we will have to stop PD for several months to let it heal. *sigh*

So, the plan for this evening is as follows:

We will be starting him on my most favorite piece of equipment tonight... the cycler. They will be filling him with 140mL's of dianeal fluid and we'll see how it goes. The plan is to start him on it at 8:00 this evening until sometime in the morning. Pray that this machine doesn't alarm at us ALL night long like it did the last time he was on it. Most importantly, please keep him in your prayers that everything continues to go "swimingly" and he doesn't spring any leaks.

I'll keep you all posted.

Enjoy this 75 degree beautiful day and think of me while I am sitting in this extremely boring hospital room :o) Enjoy your weekend everyone!

March 5, 2009

Max ate today!!!

Woo Hoo, I think I figured out how to post a video (Thanks Rick!) Don't mind my silly songs and high pitched voice. It's the only way to distract him from what's actually going on and it really works! Anyway, we are so very proud to announce that Max finally showed a lot of interest in eating today. I started him out with just cereal and then added carrots to it. He ended up eating the whole bowl and wanted more. He would grunt at me if I wasn't moving fast enough and then he would open his mouth wide when I went to give him a bite. He has never done this before. We are so proud of him! Yah Max!

"Oh mom and dad, I knew how to do it the whole time! Na na na na na na!" hehe

Test results are in...

...and things look good so far. The dye study that was done yesterday didn't show any evidence that the fluid went into his pleural cavity or his scrotum. So, this means that Max will be admitted to the hospital tomorrow (Friday) after his dialysis treatment. They will be starting his PD trials in the hospital so that they can monitor him to be sure that he is tolerating it well.

Dr. Dixon's plan is to start him out with 120mL's (4 ounces) of dianeal fluid with the manual setup. He is hoping to get him to 140mL's by Saturday night so that they can switch him over to the cycler. I am not too sure how long he will be in, but I assume if everything goes well, it will be less than a week. They said that they won't keep him in there just to go up on his volume. They will send him home and let us do that here.

Remember that this is primarily to stretch out his peritoneal cavity, but if we can get him to tolerate it as a dialysis option we will be in a much better situation. I also want to point out that the dye study doesn't mean that once we start adding volume to his belly that it won't pop that hernia back open. Of course, we are praying that this doesn't happen for obvious reasons. Also note, that he will continue to do the hemo dialysis while we move forward with this process. Max will technically be on two forms of dialysis, which isn't a bad thing. As Dr. Ben says, you can never have too much dialysis. I don't know if it's possible, but maybe this will help him along with his growing and developing as well.

Keep Max in your prayers that everything stays in it's place and doesn't go wandering around his little body. I'll have my computer with me at the hospital, so I will keep you all posted.