December 29, 2009

It's been a awhile

I realized today that it's been a really long time since I have updated all of you on Max. Simply put, he's doing great! Despite the temper tantrum and whiney phase we're going through right now, he's wonderful.

He's still on the verge of crawling. He gets up on all fours but that one stinking leg gets stuck under him in the transition process so he collapses on his belly. He will pull himself up with assistance from someone's hand on his knees and butt and he's still walking in his walker.

He learned another sign last night to bring us up to a total of four (want, more, drink and all done). He is starting to make the sounds of some words which is awesome! He will make sounds for on, off, in, out and hi. He has also added the letter B in his vocabulary.

We're definitely getting there.

So how is he doing medically? Fantastic. As you saw in a previous post, we are on once a month visits now to the dialysis clinic for labs. We go back on January 6th for our first visit since December 9th. It's a little nerve wracking on my end. I over analyze every whine and whimper. I am constantly over thinking things and blaming them on an elevated lab or maybe the newly found hernia on his belly is bothering him.

Oh the worries that a mother of a chronically ill child has. I need to learn to relax and just enjoy him for him rather than always thinking about whether the amount of juice he had today is raising his potassium. I guess it just comes with the territory.

We have had a couple of follow up appointments this month. We met with high risk clinic earlier in the month. This is when I mentioned the bulge that he has along one of the incisions on his belly. It is a hernia but they are not going to fix it at this time. We do have to watch it to make sure that it doesn’t get “hard.” If this is the case we have to rush him to the ER (this is why I am constantly wondering if his whining is the hernia). Other than that everything is going well. Dr. Cahill doesn’t want to see us again for 6 months.

We had a renal and bladder ultrasound that was done in record time. It usually takes an hour because Max doesn’t like to cooperate, but he did this time so it only took 20 minutes. Thank you Max!!! We had our urology follow up yesterday with Dr. Alam (this too was done in record time- we were in and out in about an hour).  I was hoping to walk out feeling better about everything which I did, but I also walked out a little confused I guess.  Dr. Alam is still thinking that transplant is happening in the spring whereas Dr. Brad and Dr. Ben are telling me summer. So I have no stinking clue what’s going on. I wish we would just set a date.  I did find out that it’s looking like Dr. Sheldon will be back home in Cincinnati by February. So this means that if we do transplant in spring that Dr. Sheldon should at least be able to sit in on it. If Dr. Sheldon says that he will be operating by June then we will wait until then so that he can do the surgery (this is what Dr. Alam’s plan is anyway).

Dr. Alam seems to think that now that Max is bigger he doesn’t feel that he will have as much of an issue connecting the ureter to the bladder, nor will he have to take down the vesicostomy and redo it. All good news!
I asked Dr. Alam if Max was without a doubt going to need a bladder augment or if there was a chance that his bladder could have improved. His answer was that his bladder could improve! There is a chance that Max’s bladder could have gotten bigger and that the pressures could have gone down. IF this is the case, Max’s vesicostomy could be broken down so that he can pee on his own. This would also mean that we would have to catheterize him through his penis several times a day, but I will take it. Not that I want to do it, but the fact that Max would urinate on his own would be a miracle. IF Max’s pressure are borderline Dr. Alam said that Dr. Sheldon will make the final decision on what the next step would be for Max’s bladder.

We will be doing a VCUG and urodynamics in a few months to see what his bladder is looking like. Dr. Alam has also increased his Ditropan in hopes that it will help his bladder improve. Ditropan is a medication that reduces muscle spasms of the bladder and urinary tract.

So this is where all of you prayer warriors come in. I have been silently praying for this on my own thinking that it was an impossible prayer request. Now I am asking for all of you to pray for Max’s bladder. Please pray for it to have gotten bigger, for the pressures to have decreased and for the grade five reflux to have either decreased or gone away.

Dr. Alam told me to never give up hope but that all of this is a long shot. The things that we are hoping and praying for are obviously the best case scenario but it would be a miracle if they happen. Max needs another miracle, so I ask all of you to please pray. Please have everyone you know pray that Max’s bladder improves and that he doesn’t need a bladder augmentation.

Please pray for the best case scenario. Please pray for a miracle.

December 25, 2009

Merry Christmas

Merry Christmas Everyone!  Hope its full of lots of love and laughter.

Love,

Tim, Beth and Max

December 23, 2009

Project Santa was a Success!



We want to thank all of you who donated to Project Santa.  It was so wonderful to see the excitement on the faces of the ladies from Children's.  We knew right away that we had made a difference in the lives of these children. 

Cathy and Maggie told us that Children's Hospital's budget for toys is very low because they focus on care and research.  The hospital is only able to budget $1.00 per patient! You can't even buy a pack of gum for $1.00! They went on to say that they never run out of toys though because of people like you. So we thank all of you from the bottom of our hearts for helping us put a smile on these kids faces.  Thank you for helping us make a difference.  We wouldn't have been able to do it without your help.

It was so rewarding for Tim and I to be able to give back to the hospital that saved Max's life.

Merry Christmas everyone!


December 15, 2009

Project Santa

I wanted to take this time to thank all of you that have participated in Project Santa. Our spare bedroom looks like a toy store!!!

I have been in contact with the Donor Relations Officer at Children's and she wants to meet us personally. So we plan delivering the gifts on Monday, December 21st and meeting Ms. Cathy. This means that there is an extra few days if anyone would still like to donate. Please email me at mommy2max08@yahoo.com if you're interested.

We are so excited about delivering these toys! Tim is off that week so we plan on going over around noon for a social visit to the dialysis unit, dropping off the toys and then going for our surgery consult at 3pm- this is just a visit to prepare for the transplant- no new surprises :o)

Again, we thank you so much for joining us on this wonderful journey of putting a smile on these children's faces. It's such an honor to know that we were able to make this Christmas just a little more special for these kids. It gives me chills and puts tears in my eyes when I picture their smiling faces. So thank you. Thank you for making this possible.

December 9, 2009

What do I want for Christmas?

I want Max to be in this picture in July of 2011.



Only God can create something as gorgous and this...

Dale Hollow Lake- July 2007


Let the good times roll.

sigh.

Down to Only Once a Month

Well Max had his dialysis clinic appointment today. Both Dr. Ben and Dr. Brad are very happy with Max and how things are going. So happy that they told us that we didn't have to come back until next year. You heard that right, if Max's labs come back looking good today, then he will start going once a month rather than every two weeks. This is great news because it means that Max will only have to have blood work done monthly. It's not so great news because that means we only get out of the house monthly rather than every other week.

I have to admit that when Dr. Dixon said those words, my heart broke in two. I know it sounds silly to all of you who have never spent most of your free time at the hospital, but this means we don't get to see our other "family" as often. I got an email from Max's primary hemodialysis nurse Sara today. I cried as I read her kind words:

I miss the times we had to talk. I miss seeing you and Max. I miss playing with Max. Keri and I talk about how Max won't remember us.....a good thing for Max to not remember a lot of the things we had to do to him.

Max, Tim and I will never forget those that got us to where we are today. We have grown to love these fantastic people. All of Max's doctors and nurses mean a great deal to us and it hurts to not see them as often. Of course not seeing them means that Max is doing well which we are extremely happy about, but it still hurts.

I miss the laughs, the tears and the talks that I got to have with all of Max's nurses (RCNIC and Dialysis Unit) I miss the slow days when all of the nurses would sit in the middle of the room and talk. They all included me like I worked there with them. Of course for as often as I was there they should have put me on the payroll... I could've been filing paperwork or something :o) For those of you who are thinking that I should become a nurse, the answer is "no thank you!" I know who you are!!!

After reading Sara's email and getting a really good cry out of me, I feel a lot better. (Thanks Sara!) I am going to miss seeing everyone every other week, but I am so thankful that Max is doing as good as he is. We'll be stopping by on the 21st to give all of you your Christmas Cookies. Can't wait to see everyone!!!

I hope everyone is surviving this crazy weather. We were out of electric for about 3hours this afternoon. It's too bad that we don't know anyone that works for Duke Energy :o)

I also wanted to remind those of you that are interested that Project Santa presents are due next Monday the 14th!!! Thanks again to everyone who has donated!

Happy Hanukkah Dr. Ben, Dr. Marissa and Zachary!!!

December 6, 2009

I laughed today.

I went to Ikea with my brother and sister-in-law and had fun this afternoon. I laughed today. I feel like days like today are far and in between. I am having a pretty hard time right now. I am finding it hard to smile. When it happens, it feels great, but I am sad this week. I did laugh today though.

I had one of my moments the other night while trying to fall asleep. I had my moment when all I could think about was the transplant and all of the risks for both Max and I. I had my moment when I thought about what if Max doesn't make it through this or the bladder augmentation. I hate when I have moments like this, but the reality of it is is that this is our reality. I would do absolutely anything for it not to be, but it is. I try to imagine my life with out him. I guess I do it to try to prepare myself for the possibility of loosing him. I try to prepare myself... but I can't. I can't imagine my life without him. I can't live without my son. He is my everything and loosing him would be loosing everything.

I find myself praying that I would wake up from this nightmare. I pray that Max's labs will come back showing that miraculously he is a healthy 19 month old. I pray that this will all just go away and we will be a "normal" family. I pray that Max will see me as his mommy instead of his nurse. I pray that my marriage will sustain this extremely hard journey. I pray that his bladder will miraculously heal itself so that he doesn't need a reconstruction.

My heart hurts. I shouldn't let this get to me, but it hurts that everyone around me is either expecting or has had a baby recently. Don't get me wrong... I am so grateful that these children are healthy. I wouldn't wish what we are going through on anyone. It just hurts because we would be expecting our second child if Max didn't need a new kidney. I guess you could say it's a pity party for myself. But why us? Why our son?

My heart hurts. I think about all of the things that we would be doing if Max was born healthy. The Christmas toys that he's getting this year would be totally different if he was healthy. We would be expecting baby #2. We would have our big family vacation scheduled for next summer. We would have the house baby proofed... the mattress in his crib lower than the infant level... we would be potty training... I would be working a part time job to help build up our savings for the new house. Instead we're sitting here looking at the 2010 calendar wondering which day will change our lives forever... which day will be the best or worst day of our lives. Which day in the summer of 2010 will be the day that we celebrate or dread every year for the years to come.

My heart hurts... but I laughed today.

December 4, 2009

Our Life in Pictures and a Video

Max and our pumpkins

I just thinks he's too stinkin cute

Looking a little nervous....

...yeah he didn't like the fact that his daddy was backing up the trailor right next to him...

...thankfully, mommy was to the rescue!

Max is now able to get himself into a sitting position from a laying position, so when we lay him down for a nap this is what he ends up doing.

As cute as it is and as funny as he thinks it is, it's frustrating because the child will not nap!

Max enjoying his new toy at Rehearsal Dinner


Max is now able to walk with the assistance of his walker. I am hoping to get a better video than this one, but you get the idea :o) We're so excited for him!!!

Happy Holidays!!!

Wishing you all a happy holiday season!

Love,

Tim, Beth and Max

Send your own ElfYourself eCards

Fantastic News

Max had a blood test done last week to make sure he didn't acquire any antibodies from the multiple blood transfusions that he has received. If he has acquired the antibodies this could potentially mean that he could not receive my kidney. I don't know a whole lot about it, but I know that they want him to be at 0%.

With that said, I received this email yesterday from Dr. Ben:

I have good news for you. Max's PRA is still 0% after his blood transfusions, which is perfect. You can still give him a kidney.

Ben



Thank you God!!!

December 3, 2009

Tis the season to give thanks

I was going through some pictures and I came across the disc from Max's benefit. It still brings me to tears when I look at how many people came to celebrate Max's life. I look at these pictures and don't recognize more than half of our fantastic supporters. You amaze me every day for how much love and support you offer to our son. Our son who most of you have never met. Thank you from the bottom of our hearts.







I am so glad that I found these pictures. I was having a pretty rough day until I saw that I am not alone in this journey. Thank you!

December 1, 2009

Not Much to Report

Max is doing great!

We had a fantastic Thanksgiving!

My brother Tony got married on Black Friday!

The house is decorated for it's final Christmas with the Livingston family!

One of the two big projects that needs to be done before we put the house on the market has been started!

This is the month of follow up appointments, so we're busy, busy, busy!

Max is on a learning explosion! The kid is on fire!

Project Santa is still going strong! Thank you to those of you who have donated. We greatly appreciate your generosity.


I think that's it! I am all about short and sweet post that don't include any yucky news.

We hope everyone is having a great holiday season so far! I'll try to get some new pictures up soon.

November 19, 2009

More Prayers Needed

Tim's dad needs more prayers. He had another seizure Saturday morning which landed him back into the ICU at St. Elizabeth. The doctors have changed a couple of medications around in hopes that it will eliminate the seizures. Larry is once again having a hard time recovering from this episode. As you can imagine it is very hard for his family to see him in the state that he is in. Please pray that the chemo and radiation gets rid of the tumor so that we can get Larry back.

Brooke delivered baby Gabi yesterday afternoon. The doctors say that Gabi looks great. They have her in the NICU at Good Sam and are running some tests to rule everything out. My sister-in-law said that mom and dad are doing well, but that the NICU is very overwhelming. Please keep them in your prayers.

Max, well Max gave both Tim and I a heart attack over the weekend. He woke up Friday having a hard time breathing again. No matter what we did with his dialysis he still woke up pulling and tugging with every breath. We weren't getting any fluid off of him so his weight climbed quickly. Dr. Brad asked us when the last time he had pooped was and we couldn't remember (we think it was a week- oops). So we started him on a good dose of Miralax and 4 days later he finally exploded. Ever since then we have had good dialysis, his weight came back down and his breathing is so much better. When someone on PD is constipated the catheter can get stuck against the bowel or get pinched which results in a low UF (ultra filtration) which then results in an increased weight (fluid overload) and in Max's case, an increased work of breathing. All is well now.

Max is also on the verge of walking in his walker. We put him in it and he goes to town cruising backwards. We have decided to increase is physical therapy time to twice a week. Mr. Dan (physical therapist) would like to have him walking before his transplant to help with his healing process, so he felt it important to work with him as much as possible until the end of the year. So on Mondays we will take him to Mr. Dan's office and on Thursdays he will come here to the house. We are hoping to have him taking steps by Christmas. Fingers are crossed.

Project Santa is doing pretty well. If you would like to know more information or if you are interested please email me at mommy2max08@yahoo.com.

Something I am very excited about... I am going to the movies for the first time in 2years with my mom on Friday. Yes I am one of those crazed "Twilight" fans that's going to see it's newest addition on opening night :o) Can't wait!!!

And that ladies and gentlemen is the story of our life right now.

Enjoy your weekend.

November 12, 2009

Pros and Cons

First of all I have to wish our Mighty Max a happy 18 Month Birthday!!! I can't believe how fast it's going. It seems like last week we were getting the news that the chances of our unborn son surviving were very slim and look at him now! He is a happy, smart, beautiful, and on the verge of crawling 18 month old little boy! Life is perfect.

You might want to reread the second to last sentence in the previous paragraph one more time. Focus on the one new word that I don't think I have ever said in Max's blog before. Crawling. He is so stinkin close to getting himself around on his own. We watch him in anticipation daily waiting for him to start cruising. He has gotten himself to a toy that was about a foot away from him by doing one big scoot. He's so close!!! We should have a crawling 18 month old within the next few weeks.

I am going to continue to brag if you all don't mind. What's that? Brag all I want? Okay.... Max is also on the verge of standing while holding onto something. The kid is on fire!!!! I can't believe how much progress he has made in the last month. It's absolutely crazy.

Of course all the man says is "dada," even when you ask him to say "mama." What can a mama do? Absolutely nothing. I am still a proud one

Also have to brag about Max now being smack dab in the middle of the 3rd to 10th percetile for HEIGHT!!! Max has never been on the charts for his height and within 6weeks he is now in the 3rd to 10th! He went from 73.1 centimeters (28.8 inches) to 77 centimeters (30.3 inches) in 6 weeks!!! That is huge!

Anyway, I guess I have to move on to the medical stuff...

Not a whole lot to brag about besides the fact that we have the best doctors ever!!!Max had his biweekly dialysis clinic appointment on Wednesday. Max and I hung out for about an hour and a half just chilling with the nurses and Dr. Ben. Dr. Brad was able to break free from his work to come down and see Max. Both doctors said he looks great and to keep up the good work. All of his labs also came back looking pretty good. His hemoglobin is on the high side of normal, but this could potentially mean we only have to give him one of his two shots every 3 weeks or once a month rather than every 2 weeks. So not a bad level to be elevated.

Dr. Ben and I talked about the transplant a little and how we think it would be in Max's best interest (and my peace of mind) that Dr. Sheldon do the surgery. With that said, the monthly urology/transplant meeting was going on at the same time we were there. Dr. Goebel (nephrologist) was in on the meeting and before he knew anything about the conversation that Dr. Ben and I had already had, he told Dr. Ben that those that were in the meeting feel that it's in Max's best interest (and my peace of mind) to have Dr. Sheldon do the surgery. Well how's that for being on the same page? I am liking it!

What does this mean? You might have already guessed what I am about to type. This means that the transplant is being pushed back a few months to the Summer of 2010 rather than the spring. How do I feel about this? Well I was taught to make a pro and con list for things like this, so here it is:

Pros:
This will give Max a few extra months to grow (which is beneficial for the surgery itself)
It gives me more time to prepare myself mentally and physically for the surgery
It gives Tim more time to work things out with work (FMLA paperwork)
It gives us more time to save money since Tim will be taking unpaid time off work
It gives us more time to get the house ready to sell in the spring
We can now have Max's 2nd birthday party around his birthday rather than waiting until his immune system was a little more stable
The number one pro for moving the transplant back is that Dr. Sheldon will be sitting in and/or performing the surgery and that is well worth the wait.


Cons:
We have to push back building our new house
We have to push back having another baby
We have to push back the augmentation surgery
It's more time that I have to dwell on the anticipation of the surgery
It's more time of not having a date on my calendar for when the surgery will take place
It could potentially happen around my brother-in-law's wedding in New Jersey (which Tim is in)

As you can see the pros outweigh the cons by a long shot. The only one that I am truly upset about is not being able to have more kids for another 2 years or so. I so badly want Max to have a sibling, but we have to wait. I have to learn to deal with that. It is what it is and there's nothing that we can do about it.

I ask that you still continue to pray for Dr. Sheldon. As you all know we have a line of bad luck in our past and I am so afraid that something is going to keep Dr. Sheldon from doing this surgery. Please pray that he continues to do well and stays cancer free. I really need him to be in on this transplant. I don't care who removes my kidney, but I NEED Dr. Sheldon to put it into Max and connect his ureter into his bladder. I don't trust anyone else to do it but him. There I said it. It's true.

Dr. Ben asked me on Wednesday how I was doing. My response was that I was worn out. He asked if I was acutely or chronically worn out. My response was acutely. I want to let you all know that we are doing well considering the situation, but we are worn out. As simple as this sounds, all I want is to be able to put Max in his PJ's and lay him in bed. That's all I want. I am tired of getting all of his stuff ready, laying a towel on the floor and rounding him up to do all of his medical stuff that has to be done every morning and evening. We have to cath his vesicostomy, flush an antibiotic through it to help keep it infection free, clean his g-tube, give him a shot (sometimes 2), weigh him, put a diaper on in a way that his vesicostomy won't have him soaked by morning and put his pj's on. Oh wait... we're not finished yet. We then carry him to his bed, put his pulse ox on, put his nasal cannula on, get a blood pressure, get a temperature, hook him up to dialysis, hook him up to his last feed of the day and give him his meds. And that ladies and gentlemen is just one of our daily routines. Worn out? Yes, I am worn out. This all happens by 9:00pm..... and it all happens again, with a few minor changes, in reverse order at 9:00am. Somewhere in the 11 hours that he's not on dialysis or not getting ready for bed, I feed him every three hours all of which include medication, do his physical therapy, do his speech therapy, put him down for a nap and try to get something done around the house. Worn out? Yes I am worn out, but he's worth it. I don't think twice about what we do on a regular basis. We have worked so hard to keep Max alive and we are not stopping now.... not when we are this close.

To Dr. Ben and Dr. Brad:
Yes, I am acutely worn out. I will also admit that there are days when I am chronically worn out and I loose it. But as you know, I will do anything and everything that you two tell me to do if it's for the well-being of Max. Tim and I chose this path. We are in it for the long haul, worn out or not.

November 11, 2009

Project Santa Update

Thank you to those of you who are interested in helping us out with Project Santa. I got to speak with the Child Life specialist who helps out with the kids in the dialysis unit. Her name is Deb and she was able to help me with some information that we need to help us with this great cause.

Rules for Project Santa:

#1 All of the toys have to be brand new
#2 All toys have to have a minimal amount of cloth on them. All toys have to be
able to be wiped down with a sani cloth for germ reasons
#3 All gifts have to be left unwrapped

That's it. Deb didn't give me any specific ideas, but I will try to come up with some that I think would be good gifts for a child/teen. Please use your own imaginations with what you choose as well. Don't feel that you have to stick to my ideas. Also keep in mind that there are kids of all ages here at the hospital. We can't forget about the teens that are here as well.

My ideas:
Coloring Books and Crayons
Any of the Crayola products
Dolls
Cars and Trucks
Board Games
Arts and Craft supplies (beads, etc)
Legos
Puzzles
Play Doh
DVD's
Magazines

The list could go on and on. We would like to have all of the gifts in by Monday, December 14th so that I have time to get them over to Children's and that gives the fantastic Child Life Department to get them wrapped and to the children before Christmas.

We're still working on where you can send the gifts. As soon as I figure this out I will let you all know.

Again, we thank all of you from the bottom of our hearts for doing this with us. Christmas is a time of giving and what's better than helping the children that will be in the hospital during the holidays?

November 10, 2009

Project Santa

I am writing on behalf of all of the children that will not be spending the holidays with their families at home but within the walls of Cincinnati Children's Hospital Medical Center. I got this idea from another blog I am following and thought that it was such a great idea. We will be sending a gift to that family, but Max, Tim and I would love to do this for the very hospital that saved Max's life as well.

We were fortunate enough to have Max home for Thanksgiving and Christmas, but the realization is that there are going to be kids in this hospital for the holidays. As sad as it is, some of these kids are all alone. I have seen it with my very eyes. Some of these children's parents don't come to see them on a regular basis. Think about the smile you could put on these kids faces just by donating a gift for them to open. Some of these children have never gotten to experience Santa Claus. Make them believe. Make them believe that life isn't all about needles, IV poles, chemo, surgery and doctors. Make them believe in the miracle of Christmas.

So here is our request. We are asking for a donation to give to the kids of all ages that will not be going home for the holidays. I will be speaking with Child Life to see what I need to do get this rolling. I will also get a list of items that would be good for these children.

I need to get an idea of how many of you would be interested in doing this. Please email me at mommy2max08@yahoo.com or leave me a message in the comment section of the blog. I would appreciate it if you would also let your family and friends know about Project Santa so that we can have a better outcome for the children.

This is something that hits very close to home for Max, Tim and I. Please join us in making this a holiday season the kids will always remember.

We appreciate all of your support.

Tim, Beth and Max

November 8, 2009


November 8, 2009 was the one year anniversary of Max coming home, for good, from Cincinnati Children's Hospital's RCNIC. Unfortunately this big day got jumbled in a busy weekend with my brother's wedding, but what an awesome way to celebrate it! Max was the ring bearer in the wedding and did a fantastic job. I have to admit that I got teary eyed thinking about the fact that Max was even there to be in the wedding, let alone be in a tuxedo riding down the aisle in a wagon with the flower girl. I have to say that he was the cutest ring bearer ever known to man. He sat in his wagon in awe of all of the people looking at him and smiling. It was very cute.

Onto how Mr. Max is doing. We had bit of a scare last Tuesday when Max woke up having a hard time breathing. He was pulling and tugging pretty hard and I couldn't get him off of his oxygen without him dropping his oxygen saturation. I have seen him at his worse and this was pretty close to being at that point. I gave him a couple of hours to come off of dialysis and to sit up to see if it would help. It did a little, but not enough for my comfort. I called the hospital and found out that neither Dr. Ben or Dr. Brad were there at the hospital. I am one of those mama's that only likes to talk with Max's primary doctors so at this point I started to panic. I was speaking to Max's nutritionist so she paged Dr. Brad because Dr. Ben wasn't due to come in that day. To my surprise though, Dr. Ben is who called me. She had paged both doctors. Dr. Ben told me to bring him in with his oxygen and to pack our bags and that he would meet us there. (He's such a fantastic doctor). Of course I started sobbing with that news even though I knew it was coming. I had actually already started packing, but hearing him say it made it real. So I packed Max up, oxygen and all, and headed to the dialysis unit.

Max was sitting up in the bed being a complete ham. He was loving all of the attention that he was getting from the nurses, doctors and nutritionist. Dr. Ben said that if he sent him up to the floor acting like he was that they would laugh at him. We tried weaning him off of his oxygen there but to no avail. He was only needing a 1/2 liter rather than the full liter he needed earlier in the day. We waited for Dr. Brad to get there from the Anderson Campus to see what his thoughts were. He decided that if I was comfortable with taking him home on the oxygen and monitoring him that he was okay with that. If Max got any worse though then he would need to be brought back in and admitted.

So what caused all of it? We believe that he was fluid overloaded from his dialysis. He didn't have any other signs (besides a slightly higher blood pressure) of being fluid overloaded. He sounded great and was acting like himself, so they decided to change a few things with his dialysis and see what happened. We also hooked him up for 16 hours rather than 12 to try to remove a little extra fluid. Wednesday morning he was still needing a little bit of oxygen but I had him off of it by late afternoon. His breathing was calmer but he was still tugging a little. Dr. Ben was okay with it and told us to just keep watching him closely. Thursday morning, Max woke up, came off of his oxygen without any problems and was breathing beautifully. He has been like that ever since.

Thank you God for sparing Max from another hospitalization, especially with Bob and Ashley's wedding being that weekend. Thank you to Marissa (Dr. Ben's wife) for praying for Max during that scary time.

The transplant date is still in the works. I am really hoping to hear something this week considering it's been in the works for over a week now. I'll let you know as soon as I hear something.

Please continue to Pray for Grandpa Larry. He started his chemo and radiation last week. He is doing pretty well with both and doesn't have any major side effects.

Congratulations Bob and Ashley!!! We wish you nothing but the best in all of your years to come as husband and wife.

Also wanted to congratulate my brother Tony and his fiance Hillary on expecting their first baby in February. Can't wait to meet you Oliver!

Also for those of you that have been praying for Brooke and Baby Gabi, thank you! Both are doing very well. The doctor's can't find anything wrong with Gabi!!! she is due to be born on the 17th or 18th of November unless Brooke goes earlier. AND.... Brooke was able to get a 6 hour pass for the wedding. It was so great to have her there to celebrate in her sister's big day. It was hard saying goodbye to her when she had to go back, but I think it lifted her spirits to be able to get out for a little while. Please continue to pray for her and Gabi.

That's about it ladies and gents. Life has been very hectic with the wedding and another wedding in 2.5 weeks, but life is good. Thank you to those still following Max and his journey.

What a gorgeous weekend for a wedding! Here are a few pictures that I took the day of the wedding. Enjoy!!!

Going to the chapel and we're going to get married...

Max and his Aunt Ashley

Isn't she beautiful!!!

Max and Aunt Ashley taking a break from pictures

Max and his Uncle Bob after the ceremony. No he didn't wear that shirt for the wedding, we had already taken him out of his tux :o)

The new Mr. and Mrs

November 1, 2009

Favor to ask

Chunky Monkey

6 months ago was Max's first birthday party and I am just now getting around to asking you all to do this. I had a photo album with cards for people to write a little something to Max that he can read when he gets older. Of course it started raining on the day of his party and it got thrown in the house and forgotten about. So here is my favor.

I was wondering if all of you (those that were at the party and those that were not) would leave a little message in the comment portion of this blog. It can be anything you want Max to know about, wisdom, encouragement, anything. I will then transfer your message onto the cards that I made and place it into the photo album with the pictures from his party.

I would greatly appreciate all of you doing this. I look forward to Max learning about all of you that have prayed for him from the beginning and I think this would be a great way to document all of your wonderful comments for him.

Thank you everyone :o)

Happy Halloween!!!

October 29, 2009

Prayers Answered

Max's echo was normal. They did see some fluid around his lungs in the echo but his breathing is a little better today. We think that with the dialysis tweak we made last night that we may be taking care of it. We'll reevaluate things tomorrow with his PD nurse and Dr. Ben.

Today is a day for fantastic hearts!!! Miss Gabi's heart is perfect and strong!!!!!

THANK YOU GOD FOR SOME GOOD NEWS! I thought I was going to loose it with all of the bad news this week. I am crying tears of joy today!

Thank you all for praying for Brooke and her family. You all are the mightiest prayer warriors ever!

:o)

Lots of Updates...

Update on Max:
Max had his echo yesterday. 30 minutes after given the sedation he still wasn't asleep. They gave him another half dose and waiting another 10 minutes... still not asleep. Very grougy and his head was flopping around, but he was still talking and trying to sit up. We finally just started the echo while myself and two other nurses held him down. 5 minutes later he finally fell asleep. He stayed that way until I woke him up to go get our haircut. Results are in, but I don't know them yet. I just emailed Dr. Ben to get them. Check back soon...

Max also had a chest xray yesterday because I was not comfortable with his breathing. Dr. Ben and Dr. Brad thought it could be a viral pneumonia It came back descent. They said there was a little bit of fluid, but Dr. Brad didn't see it. He said if there was any it wasn't enough to worry about. As far as the pneumonia there were a few traces that could be related to it. He is on an antibiotic from a sinus infection, so they think that's taken care of it. Dr. Ben said it can take weeks to get a clear xray after having pneumonia, so he could have had this back when he had his cold (about a month ago) and we just never cought it.

I have a newborn... his name is "Cycler" and he DRIVES ME CRAZY! All he does is cry throughout the night. We get up with him about 4 times a night for 20-30 minutes at a time. I am going to throw him down the stairs when all is said and done. OKAY OKAY... don't go calling child services on me. The "cycler" is Max's dialysis machine and it is worse than having a newborn. We are trying a couple of things to see if we can eliminate some alarming. So far so good... for the first time in about 6 weeks.... I got to sleep through the night!!! This makes me a much happier mommy today. Dr. Brad says this is just a hiccup, so hopefully he's right again.

I don't know if I bragged about this or not, but at our nephrology appointment 2 weeks ago Max went from 73.8 to 75.5 centimeters. Yesterday he went from 75.5 to 76.1 centimeters. Ladies and Gentlemen.... THIS IS FANTASTIC!!! Max is now in the 3-10 percentile for length. WOOHOO for him.

Some of you may be wondering if I ever got the nerve to call and schedule the transplant. I did, but it's still not scheduled. We have quite a few big events going on in May and June of 2010 and if time will allow we are trying to schedule around them so that Tim and I can attend. With that said, I was told that Dr. Sheldon most likely won't be back until late spring or early summer. I am a very selfish person when it comes to my son's care, so I want Dr. Sheldon to be there. I want the best of the best to be in that OR room on the day of my son's "life changing" surgery. I want the doctor who says it shouldn't be a problem to connect the ureter to his bladder to be the one to do it. My name is Beth Livingston and I am selfish. I want the best.

Update on Brooke and Baby Gabi:
Brooke had the amniocentesis on Monday night. They removed a large amount of fluid and sent it for testing. The good news is that the ultrasound on Tuesday showed that Brookes's fluid level was still within the normal range. The bad news was that the tests showed that Gabi has fetal hydrops. This is a severe condition that is usually fatal to the infant. With that said, Brooke had another ultrasound this morning and it showed that all of the arteries in Gabi's belly are all looking good. The tech also said that the fluid in her belly decreased a little bit. Some of the genetic testing they did on the amniotic fluid came back and all looks good with that. Brooke's fluid levels increased a little, but are still normal. She is having a fetal echocardiogram today at 2pm, so please pray for them. Please pray that it comes back normal. Please pray that all of this is just Gabi keeping everyone on their toes.

Update on PawPaw Larry:
Not too much has changed. He should be starting his chemo and raditation treatments next week. Keep him in your prayers as he begins his 6 week treatment plan.


Update on Dr. Ben's little boy's name:
Zachary Aaron * 5 pounds 13 ounces * 19 inches long
Both mom and baby are doing well :o)

Misc Info:
Little Miss Kate (the 5 year old little girl I've been posting about who has a brain tumor) was interviewed by Dr. Phil yesterday. Stay tuned for the episode to air :o) Very exciting for the family to get awareness out there about childhood cancer. check her out at www.prayforkate.com

9 days until my little (yet taller) brother gets married :o)
29 days until my older (and much taller) brother gets married :o)

Yes we are VERY busy around here :o)

Have a great weekend everyone.

October 26, 2009

Please pray...

My future sister-in-law, Ashley, just sent me an email saying that her sister who is 33 weeks pregnant just got sent to Good Sam's High Risk Clinic. So many memories and thoughts rushed through me at that very moment. She had an ultrasound today and it showed that the baby has fluid in her belly and that one leg is measuring longer than the other. They are giving her the steroid shots to help with the baby's lungs and running a few more tests.

Please pray for Brooke and Baby Gabby.

Ashley just call me and said that Brooke has too much amniotic fluid (whereas I didn't have enough). They are going to try to remove some of it and see what happens. My guess is that they will do an amniocentesis and keep her overnight to monitor her. They will probably do another ultrasound tomorrow to check the status of the fluid in Gabby's belly and to see where Brooke's levels stand. That's my uneducated guess on what will happen over the next 24 hours. Please keep them in your prayers. I'll update as soon as I hear anything else.

Thank you.

October 21, 2009

Congratulations to Dr. Brad and Dr. Ben

The babies are booming at CCHMC.

Sending out a huge congratulations to Dr. Brad and his wife Holly. They welcomed their third daughter, Patton Marie, on October 7th.

Another huge congratulations to Dr. Ben and his wife Dr. Marissa. They welcomed their son (name to be determined) this morning at 5am.

Both mothers and babies are doing great.

Congratulations Dr. Brad and Dr. Ben. We're so happy for you and your families.

October 16, 2009

Update on Larry and Max

Larry had another MRI on Thursday and it showed that another tumor has grown. It's in the same area as the previous tumor that was removed in 2007. The doctors do not want to remove it because they think it will cause more harm than good, so here is the game plan:

Larry will be starting chemo (in pill form at home) and radiation. It sounds like he will be starting this in early November and it will take 6 weeks to complete.

Please, please pray that this all goes well and that it gets rid of the tumor. This is a very scary time for all of us and we need all of the prayers that we can get.

I will update as he moves forward with the treatment plan.

Thank you for all of the support.

Update on Max
Max's heart rate has been dipping into the 70s while he is sleeping for the past 2 weeks or so. He is staying at or slightly above normal for a kid his age, but he's never done this before. So Dr. Ben and Dr. Dixon have ordered for him to have an EKG and a Holter Monitor test done. He will have the EKG done on Monday and I still have to schedule the other test. We are confident that nothing is wrong considering Max has been on a monitor for most of his life without any heart issues, but we are doing it to "allow all of us to sleep at night."

Onto other things... Labs are great and the doctors are ready to set a date for transplant. I have to call and get it set up but am having a really hard time dialing that number. I feel like I am scheduling a date that is putting my son's life in danger. How do you pick a date when you don't know if your child will make it past it? I keep hearing from one set of doctors that it's going to be life changing and that's this is what we've worked ourselves up to. That this is what we have been wanting all along. But then another set of doctors remind me of how dangerous and high risk it's going to be. We knew it was dangerous, but I am reminded of how dangerous every 3 months. I feel like knew challenges are added every three months as well. I am petrified.

I hate thinking that 5 months from now our lives will be changed forever. Whether it be for the best or the worst, we don't know. I hate to think about the what if's. I hate thinking about all of the risks of the surgeries. That's all I hear when the doctors are talking to me about it. I have a really hard time hearing the "this is going to be life changing for your whole family" part of the conversation. All I hear is that there is only a 40% chance that the ureter will be able to be connected to the bladder....the chance of infection is very high because of his diverted bladder....he will probably come back to the ICU intubated....he is going to pee so much that we will have to give him a lot of fluids....his electrolytes could go crazy and we will have to pump him full of extra....he is going to be very puffy from all of the fluid and steroids....the kidney may not work right away and he may have to go back on dialysis until it does....you need to prepare yourself that there is a risk that he could reject this kidney.

I wish I could fast forward through 2010 and 2011 and begin a new life. I hope so much that Max will pull through these next 2 surgeries without many complications. We know there are going to be complications... Max doesn't have surgery without a complication, but I pray so hard that it's nothing major that puts his life or the kidney into jeopardy. I am holding onto hope that what Dr. Dixon said about being at Max's high school graduation will come true. I am so afraid to think too far past Spring of 2010. I am so afraid that what we have worked so hard for could take Max away from us. The one surgery that is suppose to save his life could take it.

Someone asked me, "How do you live your life knowing that Max may not survive?" My answer was, "I don't think about it. We wouldn't be where we are today if that's all I thought about." Ever since I found out on Wednesday that it's time to set a date... that's all I've been thinking about. I hate knowing that I have to call that number to set a date. We want to do this in March for several reasons, but deep down I want to wait because I know I will have those 2 extra months with my little boy. I hate not knowing. I am so tired of playing the wait and see game. I am tired of not knowing whether I will see my son go to preschool or graduate from high school or get married and have children of his own. I know that no one is guaranteed these things, but having a chronically ill child makes you think about them more. I know hate is a strong word, but I hate the fact that I have to set a date for my son's 13th surgery. I hate thinking that a year after the transplant I have to call and schedule his 14th surgery. A surgery that could last 24 hours. I hate that my son is going to have a scar from above his rib cage down to his pelvic bone. I hate that my son is going to have to take medication for the rest of his life just to keep him alive. I hate that I can't take my son out because of germs. I hate that Max will not be able to swim in the lake that I grew up at until he is 4 years old. I hate when I mistake a beep in the store or on TV for one of Max's machines (even when he's sitting right in front of me not hooked up to anything). I hate that my son was born with ESRD. I hate that stupid flap of tissue that caused all of this mess.

I hate thinking about having other children because of our experience with the first one. I thought I could do it, but I don't know anymore. I hate not knowing what the future will bring.

But in all of this hate... There is a little boy who has beat all of the odds. A miracle. A little boy that so many people look up to. A hero. A beautiful little boy that I call my son. A little boy that we all call Max "The greatest."

October 12, 2009

PawPaw Larry needs your prayers

Some of you may know Tim's dad's history, but for those that don't here is an overview. Larry had a seizure back in October of 2007 while driving on his way home from Florida. He was soon diagnosed with a benign brain tumor. It was removed I believe in November 2007. All was well until April-May of this year. He had another seizure while driving on the AA Highway. God was watching over everyone during these two occasions because no one was injured in either of these car accidents. Larry's MRI's didn't show anything so they put him back on his anti-seizure medication and sent him on his way. He had another MRI about 2 months ago that showed "a chemical imbalance in his brain." He was told that this could mean that something was starting to grow and that they may want to do chemo and/or radiation as a preventive measure. That was 8 weeks ago and he still hasn't heard what the plan of action is.

Friday morning, Larry went to eat his daily breakfast at Spare Time and had another seizure despite being on medications for it. He was sent to the ER and had a couple more there because the ER doctor didn't do what he was told by Larry's brain doctor. He was discharged to the brain doctor's office to receive the medicine they were suppose to give him at the ER. He was then sent home. So here we are again, waiting to see what the plan of action is going to be. Larry goes in for some tests on Thursday and Friday to see what's going on.


PLEASE pray for him and our family. We are trying to be patient as we wait for an answer and a game plan. It's very hard not knowing what the future holds for a treatment plan, but we are trying to be patient. Larry is also having a harder time recuperating after this series of seizures so please pray for his healing as well.

We appreciate your thoughts and prayers.

We're Back

Watching "Cars" on the way to Dale Hollow Lake


We went on a four day weekend trip to Dale Hollow Lake with my family and had a great time. We packed a whole lot of stuff for 4 days, but it was well worth it. We were very worried about Max not being able to sleep in his pack-n-play since he is very partial to his own bed, but he did great.

Dialysis went flawless and we even got the opportunity to teach Uncle Bob and Aunt Ashley how to hook him up so that Tim and I could potentially go on our first date since 2007.

Max wasn't too fond of the life jacket on his first boat ride, so he fussed through most of it. Daddy was to the rescue for the second ride though and did a couple of adjustments and he did much better. Unfortunately it was freezing for the second ride, but we all bundled up and survived.

Reality set in for Tim and I on Saturday morning though. We have known all along that our life isn't "normal" but to us, this is normal. Saturday morning we woke up to the smell of bacon, eggs, sausage, geotta, biscuits and gravy and wanted so badly to jump up out of bed and run down to eat with everyone else. Instead, we had to unhook Max from dialysis, get a blood pressure and a weight, dialate a vesicostomy, clean a gtube, change a diaper and get him dressed before we could start our day. By the time I got downstairs and got Max fed... my breakfast was cold and I only got a small piece of goetta. Don't get me wrong, we would definitely do it all over again, but it was a reminder of the hard journey that we are on. It was a reminder of what the rest of our lives hold with having a chronically ill child. But it was also a reminder of how much fun you can have with your family and friends despite what your life is like behind it all. We had a blast.

Moving on from the Debbie Downer moment.... here are a few pictures from our first vacation with Max.

Max on his first boat ride

Heading out for a walk

Do they really look that much alike?

Uncle Bob blocking the wind from Max. Isn't he so sweet?

He sat on the floor and played through most of the boat ride

Uncle Bob and Aunt Ashley

Being a ham

A family of three

Getting ready to head back home

I only have this picture on here of my goofy brother, Bob, to prove that we were on the lake rather than sitting in a boat on dry land pretending that we were on the water :o)

October 5, 2009

Pictures are Up

Click on this link: www.fromtheheartky.com
Click on Events and Specials
Click on Client Login
Go to Page 3 and click on Patch Livingston
Type the password Maxfall09

Enjoy!

Thank you Paula for the wonderful opportunity. The pictures are beautiful!

October 4, 2009

A Day at the Pumpkin Patch


Tim, Max and I had the opportunity to have our pictures taken by Paula Losure this weekend at Neltner's Farm in Camp Springs, KY. She and a friend of hers, Trisha, own a photography business, From the Heart. I will post a link and a password to the pictures once they are up.

Neltner's Farm is also have their Fall Festival every Saturday and Sunday in October. We had such a good time on Saturday seeing the farm animals, eating lunch, talking with friends and taking a horse drawn carriage ride back to the pumpkin patch to pick out our pumpkins. Of course it wouldn't be a great adventure without someone falling down the hill on their butt with Max in their arms. Yeah... that would have been me. Max survived it with only a little mud on his jeans. I on the other hand...well.... just look at the aftermath...

My hands and shoes were also covered in mud along with some spots on my shirt. I give myself a 9!


Max and Mommy on the horse drawn carriage ride on our way to the pumpkin patch


After the Neltner Farm Adventure we went home to let Max take a nap. Okay for all three of us to take a nap. Max's mawmaw and pawpaw then came over so that Tim and I could go out with our friends, Rick and Allie. We headed to the Wool Fest in Falmouth to break me in to the true country fall festivities. I know, I know... until Saturday I had NEVER been to the Wool Fest. Geesh what kind of Alexandrian am I? Well... now I've been and it was a blast!


Here are some other pictures that are too cute not to share...

A preview of Max's Halloween costume :o)


Max is getting the strength to push himself up while he's on his belly. We're so excited! Can't wait for the little booger to start scooting.


"Uh Oh! Uh... hey mom you do the pedals and I'll steer."


A sleepy little boy after a long day at the hospital


I can't believe I am posting this one, but here it is. I had to run an errand after I dropped Max off at dialysis and this is what I came back to. Yes... those are three little pony tails in his hair. And yes.... my son has a plumber's crack. Melinda and Lori.... pay backs are hell.... just remember that :o)


Sorry Ladies... Max is taken. Right before the hug, Bella gave Max his first kiss. Too cute.


We will be heading out of town this coming weekend for out first trip with Max and all of his medical supplies. We are so excited, but I am so nervous at the same time. It scares me to be 4 hours away from Cincinnati Children's, but we have everything ready in case something comes up. Max has had a cold for about 2 weeks now, so I just hope that it goes away before we go. I am petrified that it's waiting to brew into something else while we're gone. I may not get a chance to post before we go, so have a great week and weekend and I will most definitely most pictures of our first family vacation. Wish us luck :o)

September 30, 2009

Pray for Kate

I have posted about Kate before, but I think it's very important to post the link to er blog again. Kate is 5 years old and has a very aggressive brain tumor. She started her third round of a very strong chemo treatment early this morning. They found out a couple of weeks ago that the tumor had "significally decreased in size." Please pray that this round of chemo eliminates it completely. www.prayforkate.com

This link http://www.ohsoposhphotography.com/blog/ is a photo shoot that was done for the family from a cancer survivor who heard of Kate's story from someone elses blog. These pictures are absolutely beautiful and capture Kate being a 5 year old little girl rather than a little girl fighting for her life.

Please pray for Kate.

September 25, 2009

Open Fetal Surgery Picture

Below is the picture of Max from the open fetal surgery we had on February 13, 2008. He was 22 weeks 5 days gestation when this picture was taken. To me it isn't very graffic, but to some it could be. To me, it is the most amazing picture I have ever seen. This is my son before he was born. This is my son in his first appearance. This is my son on the day his life was saved by Dr. Crombleholme. To me it's proof that miracles do happen. What a beautiful thing.



Thank you Jessica for making it so that I could post it.

Please Vote

Please vote every day for Cincinnati Children's Hospital Medical Center to win a game room. They are in 7th place right now and need to be in at least 3rd place to get the game room. You can vote 10 times a day. The website for voting is http://xbox.childrensmiraclenetwork.org

You do have to register, but please don't let that scare you off. It's a free contest. These children need this gameroom. Please vote, if not for the hospital itself, for the children who are stuck within it's scary walls.

Thank you,

Tim, Beth and Max

September 24, 2009

Bored... and scared.

"Bored" is the best way that I can describe our no longer going to the hospital several times a week. We're bored and I refuse to take Max out of the house unless absolutely necessary because of the swine flu outbreak in our area. So... we're bored. We miss our doctors and nurses. I miss sitting there in my rocking chair chatting with other adults. Granted, we have had to go to the hospital twice this week for other appointments, but it's just not the same. I can't joke around with other departments like I can the dialysis unit. We miss you ladies :o(

Onto the results from all of the tests and appointments Max has had over the past month. The sleep study came back better than the one before. Max has a mild case of sleep apnea (which we knew), but it's fixed with his 1/4 liter of oxygen. The doctors think he will out grow it within a year or two. With that said, pulmonology doesn't need to see us for another 3-6 months. So basically right before the transplant.

As far as Max's renal (kidney) ultrasound goes... I didn't ask for the results because I forgot and Dr. Alam didn't say anything negative about it, so that was good enough for me. BUT... I was reminded once again about how dangerous and high risks Max's next two surgeries are going to be. I am petrified of the outcome. I can't help but think about the chance that Max may not make it through all of it. It kills me to think that everything that he has been through and the one thing that we have work so hard on could take him from us. I just hate being reminded every three months that Max isn't out of the woods yet. Needless to say I have been very down since his appointment yesterday. All of this rain, swine flu cases and robberies going on in our area aren't helping at all. I am just so scared. To top it all off, we were really hoping that both surgeries would be over in 2010, but Dr. Alam told us that he would preferably not perform the reconstruction until a year post transplant, which means we move into 2011. I just want this to all be over so that we can move on with building our new house, extending our family and go on a very long and very far away vacation. I just want it all to be over.

I ran into another transplant patient, Peyton, in the lab and her mother was willing to answer some of my questions regarding the bladder reconstruction. She told me that it is very scary but that the end result is much better than before the surgery. She also told me that Peyton's surgery lasted 16 hours. That is not a typo. I knew that particular surgery was a long one, but 16 HOURS!!! Oh my goodness!!!!! I am going to go insane.

On a more positive note, I have heard from a little birdie who knows another little birdie that Dr. Sheldon is in remission. Thank you God. Dr. Alam (this is not who told me) informed me that there is a chance that Dr. Sheldon could be back by the time Max's transplant is scheduled on the spring. He did say that he probably wouldn't be the one performing it, but he would probably sit in on it. This, of course, makes me feel a whole lot better. Please pray that this is the case and that he will be there to watch over Max during these two very difficult operations.

I have to put this out there because I am so thrilled to have seen it. Our RCNIC nurses are doing a presentation in Texas on Max's PD. They sent me the presentation in PDF form. You'll never believe this, but there is a picture of Max back when he was delivered partially at 22 weeks during the open fetal surgery. As soon as I saw it I starting sobbing. I have been wanting to see these pictures since the surgery and to my surprise there it was. His tiny little leg resting against the surgeons hand as he put a little hole in his belly. UNBELIEVABLE! The file was in PDF form so I have no way of copying and pasting it into the blog. I am trying to get my hand on the rest of the pictures so that I can show them off. It's absolutely amazing!!!!

Anyway I am going to end this with prayer requests. We need you to please pray for Max and for Tim and I as we prepare for the upcoming surgeries. 2010 and 2011 are going to be two very rough years for us. We need as many prayers as we can get. Most importantly though, we need you to pray that Max pulls through both surgeries without any major complications (infection being the biggest concern for the transplant). Please pray for our strength.

Please pray.

September 17, 2009

Milestones over the past 4 days...

Ever since Max pulled his catheter out this past Saturday it seems to be that he is on a learning kick. He has learned to do sign "want", "more" and "all done." He started combing his hair tonight after I gave him a bath, brushed his hair and handed him the comb. He learned where his head is on Tuesday in the course of a few minutes. He got himself into a sit from laying on the floor today with Mr. Dan (physical therapist). Now of course he wouldn't do it for Tim and I this evening, buy I am still considering it a milestone partially accomplished.

Oh yeah! Did I mention that he pointed out most of the animals that we asked him to identify on his flash cards? No? Well he did. That's right ladies and gentlemen, my 16 month old ESRD little boy knew his animals!!! That was a proud mama moment!!!

Max has also started saying "mama" and "nana" again. He had these at one point but dropped them. Well I am very happy to say that they're back.

Update on Max's Medical Status:

Max is doing FANTASTIC!!! We had our first PD clinic appointment on Wednesday and all went great. His labs looked wonderful (after not having hemo for 5 days). This means that he is doing very well on only doing PD. They got a length on him and he grew 1.8 centimeters in the course of one month. His head also grew a great amount, so much that the doctors wanted the dietitian to recheck it. We do have to add another shot to our medication list. We have to give him his red blood cell producing medication in a shot form every Friday on top of his growth hormone injection that we do every night :o( Poor guy. He doesn't even flinch with the growth hormone, so hopefully we get the same result with this new one.

We have our pulmonary follow up (sleep study results) on Monday and a urology appointment on Wednesday (we meet our new doctor since Dr. Sheldon is still out). We also have to go back to the PD clinic for more labs and of course to see our second family (we miss you guys already). I'll post next week on how everything goes.

That's all folks. I have absolutely no bad news to report today :o)

Enjoy your gorgeous weekend!!!

September 12, 2009

"uh oh"

This is exactly what Max said when the nurse walked into our ER room this evening. Yes, you heard that correctly. We spent the evening at the CCHMC ER. Let's rewind a bit...

Tim was playing in a softball tournament all day today, so Max and I went to see him play for a few hours. I then brought Max back home for his afternoon nap and I started to clean up around the house. I heard Max waking up from his nap around 5:00pm. I went to get him a few minutes later. I disconnected his feeding tube and was about to get him out of bed when I realized something was bunched up under his shirt. I immediately thought that it was the gauze that we put around his gtube to keep it from leaking since that was off and had to be replaced. NOPE.... it was his hemo catheter... dressing and all. I frantically started searching to see if it was completely out, which it was not. At this point I am in total and complete panic mode. I started getting things to redress it but quickly realized that it takes three people in the dialysis unit to do this and I was alone. My mind was racing for an idea on how to get this usually sterile area that was now exposed redressed. The only thing that I could think of doing was to put a bandage over it and call the nephrology fellow on call. I called Tim first so that he could start heading home since I knew we were headed to the ER. I then called the main hospital number to get the fellow on call paged. 15 minutes later I was still on hold and on page number two. The experience we have had with the fellow that was on has always been very good, so it was unlike her to not answer her pager. When they paged her for the third time I immediately thought that they must have had the wrong number. Anyway, we ended up talking to the attending and she told us to head to the ER.

So I packed Max's bag just in case they decided to keep him and we headed over. Miraculously we got taken back right away. There we waited for 15 minutes to have Max weighed and then got put into a room and met with another nurse. And then another nurse. And then a PCA. All asked the same questions. 30 minutes later a resident came in and for the fifth time we went over what happened and why were were there and what Max's history is and what surgeries has Max had and what/if any meds Max is on. YADDA YADDA YADDA!!! I should note that at this point I have told everyone of these people that NEPHROLOGY AND SURGERY NEEDED TO BE PAGED!!! About 30 minutes later the same resident came in and said that she needed to look at Max's catheter to see what kind he had. So she walks over to him, pulls his shirt up and starts trying to take the Tegaderm dressing off that I put on to secure it so that it wouldn't fall out. I didn't really realize what she was doing at first, but when I did I asked her why she was taking his dressing off. I went on to say (in a not so friendly way) that his site was suppose to be sterile and that if she took it off it would get pulled out. Tim jumped in and said, "Max is strictly under nephrology care and we would like for them to be paged before anyone touches this catheter." Then... are you ready for this... SHE FREAKING ROLLED HER EYES AT US!!!! OH MY GOSH I about jumped her shit (sorry for the french).
I yelled..."DO NOT ROLL YOUR EYES AT ME. I have asked 5 people to page nephrology... has it been done yet?"
Resident: "Well no I was going to go do it now."
Me: Well then I would suggest you do that so that we can figure out what they want to do with this before you go taking the dressing off."
Resident: "Okay I was just trying to help."
Me: "Well I understand that, but I would really like for his primary doctors to be contacted first."

Are you ready for this... SHE FREAKING ROLLED HER EYES AT ME AGAIN!!!! I about jumped her shit again!!! (sorry for the french, again) I was so freaking fired up at this point I was almost in tears.

So she left and must have paged the attending because the attending then came in to talk to us. I was still ticked off at this point so I started going off on her telling her that nephrology and surgery needed to be paged now so that we could figure out what we needed to do about this catheter that is falling out. I then felt so guilty, because she said in the sweetest voice that everyone had been paged and that they were waiting to hear back. Talk about feeling awful. Anyway, they got everything figured out and the surgery resident came in to let us know that he was there and that he was going to be taking care of Max. When he walked out I immediately thought, "Oh great. Another resident." Anyway, surgery came back in and said that the nephrology attending said to pull it. I should also note that the surgery resident ended up being fantastic. He was very sweet to Max and kept him entertained for the 15 minutes that he had to hold pressure on the site. Max was loving it.

Within minutes our security blanket was pulled and thrown in the garbage. It was a very bittersweet moment to see that thing thrown away. I love it because it's one less thing that could cause infection. I hate it because it was our security blanket. If Max had a bad PD (peritoneal dialysis) night we could always fall back on hemo. I hate it because for the past 16 months I have gone to that hospital 7 days a week, to 4 days a week, to three, and then two. Now... I don't at all except for his monthly visits. Granted, I am sure they will want to see him once a week for a little while just to be sure he is tolerating only being on PD rather than both, but still. What am I suppose to do with all of my time? I wasn't expecting this, so we didn't get to celebrate our last hemo treatment. We didn't get to say "goodbye" to our nurses. I have been wanting that thing out for so long, but now that it's out I am kind of sad. I am scared of this new chapter.

Please pray that Max doesn't get any kind of infection from the catheter being exposed and pulled out. Right now, that is my biggest concern. Needless to say, I have already taken his temperature twice and we've only been home for an hour and a half.

***Sorry I just reread that and it is all over the place***

On a positive note... Max is down to only having 2 tubes rather than 3. So yah for that!

Hoping for a quiet Sunday. Enjoy the beautiful weekend everyone!

I feel the need to post this

Below is a link to a Dateline segment on Open Fetal Surgery. Unfortunately, I have not seen the pictures and/or video that were taken during Max's fetal surgery so this helped put it all into perspective on how they did it. This clip really hit home for me.

Warning: I needed a tissue.

What a miracle.

(I can't figure out how to make it a clickable link so you will have to copy and paste it, sorry.)

mms://video.texaschildrenshospital.org/OpenFetalSurgery.wmv

September 9, 2009

Sleep Study was Awful

We got to the hospital around 5:00 last night, ate some dinner, got signed in and were admitted to the Sleep Study lab on A3 South. Max started crying as soon as we walked into his room because he knows that something isn't right. He calmed down after a few minutes though. We then had to go through the typical routine of having a million of the same questions that we have answered time and time again, got check out by the nurse practitioner and waited. Around 8:00 the guy performing the sleep study came in to start getting things ready and attached to Max. Max cried from the time the first probe was placed until about a half hour after the last probe was placed. He finally calmed down around 9pm, but never slept for longer than a half hour until around 11:00. Starting around midnight, the guy came in about every 30-45 minutes to readjust the nasal cannula that was put on crooked and kept coming out of Max's nose. Of course this meant that Max was woken up. He cried from the moment that guy walked in and for about 5 minutes after he left. This took place until about 3-3:30am. At this point I got up and readjusted how Max was positioned and placed the nasal cannula back in his nose. Max finally fell into a deep sleep around 3:45-4:00. The guy came back in at 6:15am to unhook everything. I have absolutely no idea if they got enough information since they get most of it when he is in the deepest sleep (REM sleep). All I can say is that I am never doing that again. It's all Tim the next time around.

We got out of the sleep lab around 7:15 or so, went down and got some breakfast and then went to sign in for Max's ultrasound. They told us that they couldn't get him in early, so we sat and waited for 2 hours before we were called back. Max wouldn't sit still enough for the tech to get any pictures so I ended up having to lay on the bed with Max laying on my chest. He eventually fell asleep and she was able to get some good shots. She said that things are looking stable compared to his previous ultrasound from April.

Needless to say, both Max and I were exhausted by the time we left the hospital at 10am. We got home at 10:30 and we were both asleep by 11am. We woke up when Tim got home around 4:15pm.

What a way to celebrate our third wedding anniversary!

September 8, 2009

Sleep Study Tonight

Please say a little prayer that everything goes well and that Max is able to sleep with all of the wires attached to him.

I don't think I'll have the results until September 21st when I meet with the pulmonology doctors. I will keep you all posted when I get more information.

Thank you everyone!

September 2, 2009

CT Results

Max did great for his CT yesterday. I got to sooth him while they put him to sleep with the gas mask. That was absolutely heartbreaking. Thankfully they didn't have to put in an IV or intubate him. Tim ended up working the night before and got off in time to be there with us. Max's radiology nurse told us that he would probably be very cranky and sleepy for 24 hours. So we got home around 2:00pm hoping for a good nap so that Tim could get a nap in as well. OH NO. Not Max. The little booger was up and playing until 6:00pm. He never does anything the way that they're suppose to happen. Oh well... I am just glad that he tolerated it very well and never had any side effects from it.

On with the results.... after making us wait until 4:00 this afternoon his pulmonologist called with the results. He said that nothing unexpected was found. There are from marks the pneumonia he had. They can also see signs that he was intubated quite a few times. We were all expecting this. With that said, the reason we did this test was to see if there was any damage from aspiration and there is not. So we don't have to worry about Max and his eating. He also said that Max's right lung is a good deal bigger than the left. He said that this is because his left lung is more underdeveloped so the right lung has grown to compensate for that. Now onto the biggest and greatest news, they are anticipating that Max will outgrow is lung problem!!! This is HUGE!!!! Of course, he said they can't see into the future (duh!) but they are expecting that as he grows his lungs will grow with him. So for now, Tim and I are checking the lung condition off our list of things to worry about. Not that he still doesn't need your prayers in the lung department, but now we put all of our focus on the kidney condition.

You all have a great rest of the week! We have another sleep study next Tuesday night and a kidney/bladder ultrasound on Wednesday morning (shoot me). I'll keep you posted on how all of that goes next week. Enjoy your weekend.

August 31, 2009

Prayer Requests

Hello all. I have a couple of prayer request for this week. The first one is for a friend of ours niece, Chelsey Rudd. She will be undergoing heart surgery this Wednesday at Children's. Please keep her and her family in your prayers as they embark in this difficult journey.

The second prayer request is for Max. He has a CT scan tomorrow of his lungs to check for damage from aspiration. This test will give us some answers on the status of Max's lungs. We are praying for results that show that everything is clear and that there is not any damage or any other unexpected findings. He will have to be sedated and intubated for this test so that they can get a clear image. If you could also pray that everything goes well with that, we would greatly appreciate it.

Max's pulmonologist will be calling me on Wednesday with the results of the CT. I will let all of you know as soon as I hear something.

Also, if you could keep everyone affected by the California wild fires in your prayers. Especially the families of the two firefighters that were killed.

Have a great week everyone!