Surgery #9

Brayden had his 9th surgery...well, 9th anesthesia. He has had 15 surgeries but some were grouped together. Anyway, its over and done. The docs took out both of his kidneys and used his huge, stretched out ureters to augment his bladder and make it 30% bigger. It took 4 hours but he did fine.
He only needed 2 doses of tylenol w codeine last night. I am so proud of my baby boy. He is such a trooper!

We will be in the hospital for 7-10 days until we get dialysis just right. Then on April 6th we will transplant!!!!!!!

A year to remember

Well, My baby boy is a year old. Its hard for me to look back on the last 365 days and think about what all we have been thru. Its hard for me to think about how in the first few weeks of his life, I wondered if we would ever see this time in his life. I worried everyday that something would happen and I would lose my baby boy.
I know I couldnt have made it to this point without my friends, family and God. I was raised in the Church but have struggled this past year. I still struggle but I know that God gave me my baby boy and he knew that I could handle everything. Sometimes though, I wish He didnt have so much faith in me.

My family has done so much for us. They all love Buddy so much and some just met him yesterday. I have been humbled by the out pouring of love and support we have gotten. We sparked a new tradition in our family. This Christmas, my stepdad's family took the money that we would have spent on each other and they gave it to us to help out with transplant issues. I only see these people once or twice a year, it still amazes me.

Our friends have been there thru it all with us. The benifits for Brayden were amazing. The money raised will help so much when we have to start paying incredible amounts of money for anti-rejection meds. I still find it amazing that even after a whole year, everyday atleast 10 people ask how Buddy is doing. I have a friend that works across from my office in the ED, she told her 5 year old son about Brayden and her son now prays every night to God to help "the baby that cant pee".

Dr. Malagon- This woman has saved my sanity. Not only do I trust her medical judgement, I trust her with my son. If something happened to me, I would trust her to do whatever she thought needed. I wouldnt think twice about it. Not only does she know her stuff, she lets me have a little bit of control. I know my baby and I know what his labs say...if I change something, she either says ok or if she thinks otherwise, she always explains why...that is a big thing for me.

My internet friends- I have found some wonderful moms on the internet. I am a member of several yahoo support groups as well as groups on facebook. I learn so much from these people. It made me realize that I am not the only one. Jessica has made my life so much better. Even tho I have never met her and her son Logan, I feel so close to her. Our boys are 364 days apart. Logan had his transplant just a few months ago. Thank you Jess. Some days I wonder how we have done this. Im glad I met you. You and Logey make me look forward to post transplant more than ever!
___________________________________________________________________

On a lighter note....
Brayden got his 4th tooth today. I noticed it while he was giggling at me. Tonight he weighed 9.5kg (dry). He has been on Human Growth Hormone for 2 weeks now and I can tell he has already grown in height. We will see on Wed. He is as happy as ever and is learning new things every day. He recently has started to want to crawl. When he cant get to something he gets mad and tries to make himself go, but he just cant do it. Its hilarious to watch.


He will have his next and biggest surgery on Wednesday March 3rd. This one is a Bilateral Nephrectomy and Ureterocystoplasty. They are gonna take out both of his kidneys and make his bladder bigger using the ureters. This is a 2-4 hour surgery and by far the biggest and most complicated yet. Im slightly worried but am trying not to be. I have to work Mon and Tue so packing is going to be a pain. He will be there for at least a week and so I have to pack for a week to! Thats alot of stuff when its for the both of us!





To my baby boy,
You are the light of my life. Your first year has been tough. You are such a special boy. You make mine and your daddy's world so much better. You make my heart happy when I see you smile. The best part of my day is when you grin at me in the morning when you first wake up. Nothing can ever top that. I love you with all of my heart. I cant wait for you to feel better. You are my world, my life and will always be my sweet baby boy. I love you.......Mommy

We have a date!

This is gonna be short.....

We have a date for transplant.. APRIL 6TH, 2010.

Brayden's nephrectomy will be the first week of March (not sure when yet).

YEAH!!!!!

The pains of our lives

I have decided that I will do anything for my child. Its not really a decision but it is what will be done. Yesterday, I had my non functioning but non painful gallbladder taken out because it seems like that what was making my liver enzymes wacky. This had to be done so that the surgeons would consider me to donate my kidney to Buddy.

I would do it again but let me tell you....this sucks. The gas pains from the CO2 gas they blow your insides up with is killing me. My right shoulder and chest feel like there is a knife stuck in it and when I breath it just wiggles around in there. I have tried every folk remedy there is. Here is what I have tried

1. Eating a tablespoon of plain yellow mustard.....that worked for an hour or two the first time, after that it didnt help at all.



2. Laying on the floor on my back, puttin my arms above my head, raising my head up and burping.....that didnt help at all and made it worse.



3. Laying on the side that hurt....that just hurt..



4. Laying on the other side....that hurt



5. Sitting up straight and not moving....that helped my chest pain but made my back hurt



6. Baby mylicon drops....its the same as gas-x....that helped a lil.



7. Motrin



8. Tylenol



9. Drinking fizzy stuff and burping.....nope, didnt do nothing...



10. Percocet....finally I gave in and took 2 of them and laid down and took a nap.

You must understand that I am a baby about some things and a trooper about others. Surgery seems to be on my trooper list. When I had my C-section for Brayden, I took 1 percocet the day after I had him, just to go to sleep. I have taken more narcotics for this gas pain than I have ever taken in my life! This is way worse than my C-section.

I have also had to deal with my son's pain. This morning, I realized that I am the cause of this pain. For about 2 weeks, his vomiting got really really bad. Im not sure if it was a bug that lasted a long time or if it was just kidney puking but he lost a whole pound. He has since started gaining back and stopped vomiting so much. For the past 5 days, he has had diarrhea. His poor bottom went from just a lil red to bleeding diaper rash in 1 day. I realized this morning that I am the cause for the bad diaper rash.

Brayden takes an antibiotic every day to help prevent urinary tract infections. This can cause his gut to have an overgrowth of "good" bacteria. Brayden's diaper rash is a yeast rash because I put Nystatin ointment on it and it cleared up in 4 hours. The reason that he is getting the yeast rash is because I have not been giving his Culturelle to him. Its a probiotic that helps keep normal flora under control when taking chronic antibiotics. He has been off of it for about 2 weeks cause I can only get it at 1 store and the store is hard to get in and out of and I havent made the effort to go in. That will never happen again. Tomorrow, I will be going to get all that they have.

As of right now, we go to see Dr. Malagon on Thursday when I have yet another test to make sure I can donate. Hopefully, I can get some times for surgery etc. ironed out. Hopefully, the plan will be to do his nephrectomy surgery the first week of March and transplant mid-April.

We still dont know anything about Kyle's tests. I am giving them until this Friday before I call and ask again about the results. In my gut, I think he does have the gene. Maybe that is just my pessimistic self trying not to get my hopes up, Maybe its my mom/nurse instinct. I dont know, it will be what it will be. I just feel bad for Kyle, he isnt worried about his health so much, he is more worried that if he does have the gene, then he cant help our child. That is really hard on a parent.

This is something that I have struggled with today. Because I have had my gallbladder out yesterday and am feeling the pain. I am worried about transplant. I am worried that I am going to in so much pain that I wont be able to properly keep an eye on him. Its not that I dont trust the doctors, nurses and Kyle but I dont trust anybody but me to keep an eye on things. I have caught so many things that they have missed. I am going to just have to teach Kyle what to look for. Its the first few days that Brayden will be on the ventilator and things will be most crucial. This is the time that I need to be my best. I just hope and pray that I am stong enough to be a patient, nurse, mom and advocate for my child.

On a lighter note.

My mom and I were talking today and she said that I should write a book. Im not the best writer but she is. I think, eventually, that I will do that. If nothing else, I want to have a "How to have a kidney kid" book to give other parents that are going thru similar situations. I guess, what I plan on doing is gettin stories from all of my Internet friends to put in the book. Its a ways away but I think that its possible.

Okay, so.......Im done whining, done being self centered for the moment and done typing..Have a good day!

Today was one of the worst days ever

Well, we got up at 430, left at 6 and got up to UT at 8am. We went up to see Dr. Malagon at the clinic to check out buddy before surgery and I asked about Kyle's Ultrasound that he had on Friday. His US and CT revealed that he had cysts on both kidneys and one in the liver. Dr. Malagon said that it shouldnt be a problem and we went down to the surgery waiting room. About 11, we went back to the holding room and were hanging out with both sets of Grandparents. Dr. Malagon walked in with this other doc and told us we have to cancel. The other doc was Dr. Rivers who is an adult nephrologist. She is great. She talked to us ( mostly them) for 30 min in the room. I lost it...I mean completely lost it. I ran out in the hall and fell to my knees, punched the wall (yea I know stupid) and cried. In hindsight, the family dynamics were priceless. Kyle's mom was covering her baby, I was covering my baby, and when I lost it my mom covered me. Anyway, we saw Dr. Rivers in her office and sent of a genetic test to see if Kyle has Autosomal Domminant Polycystic Kidney Disease. From what little reasearch I have gotten to do so far ADPKD occurs in 1 in 400-1000 people. 25% need a kidney transplant by age 50 and 75% by age 75. So, if he does have it then we really dont have to worry big time until he is 70 or so. If he does have the gene, we then have to think about if we want to have another kid because there is a 50% chance that the baby would have ADPKD also.
So, we started my work-up today. I got labs, EKG and Chest Xray today. I have a CT tomorrow and a Nuclear Med Test ( GFR) and Renal Ultrasound on Wednesday. Kyle will continue with his workup in hopes that the genetics will be negative.
This hit us super hard. Even though my mom/nurse intuition told me that something would be wrong, we thought we had gotten past it. I think we would have handled it a lil better if we hadnt been RIGHT there!
So, we will not be doing any surgery until we know that SOMEBODY is a match and READY TO GO. Dr. Hill will be out of town the last week of Jan. If we are sure then hopefully we can do surgery the 1st week of Feb.
I try to keep telling myself that God wont give me anything that I cant handle, but I find myself wondering why....why cant something go our way? Why cant my son and my husband be healthy? Why not just pour alcohol into my open heart...just to make it burn?
The only thing that kept me going today was looking at my beautiful son's face and listening to him babble on about the bay-bay-bay-bee all day. He is what I live for.
Thank you all for your prayers, kind words and guidence.

Its 2010 and Im crying again!

I am crying because I am a blubbering idiot! My baby boy is laying on the couch taking a nap, my wonderful husband is watching tv and I am crying. Why? Because I just read that one of our Internet kidney friends got a kidney. Some one gave him a new life of feeling better.

I just can help but IMPATIENTLY wait. We now have a plan and tentative dates. I have patiently waited this whole time, now it is my turn to really worry.

Jan 7th Kyle and Buddy both go to the doctor. Kyle goes for testing and crossmatching and Buddy for the usual. I worry because Brayden has 53 antibodies in his blood. This means that he has a pretty good chance of having a positive crossmatch with Kyle's blood and that would mean that he couldnt have Kyle's kidney. If that happens, then we will go to me but what if I am not healthy enough and they wont take my kidney? The what ifs are killing me!

Jan 18th ( if all goes well with the crossmatch and Kyle's testing) we will take out Brayden's native kidneys and augment his bladder. This surgery scares me MUCH more than the actually transplant does. He will not have any kidneys and there for will not have any way of fluid elimination except by dialysis. This puts him at a much higher risk of fluid overload and other complications. It can be done but being the nurse that I am, I know all of the issues that go along with all of this. Sometimes I wish that I just didnt know what could go wrong. Ignorance is bliss! But then again, we will be able to spot issues much faster since we know what to look for.

I will have to put a catheter into his bladder every night and fill his bladder up with saline so that the bladder will not "lock down" while it is healing. He will have a "dry" bladder since no kidneys are gonna put urine in it. Its gonna suck for a while, but he should get used to it.

6 weeks later, Buddy will have his transplant. They want to give his bladder 6 weeks to completely heal before we transplant so we dont have a risk of infection there.

I am scared to death and happy at the same time. I dread the surgery days but I also welcome them because it is one more step closer to "normal". I look forward to my already happy baby boy to be even more happy and healthy.

Today I am thankful........

Today I am thankful. Today I am extra thankful. Tomorrow is Thanksgiving so I feel compelled to tell all of the things that I am thankful for. Bear with me.......

I am thankful for

• Dr. Malagon- without her Brayden wouldnt be here with me.
• My husband- he has put up with me for this long, even through the crying fits when I just dont think I can handle one more thing.
• My family- My mom is amazing, she has always been the one to try to look at the bright side when it comes to Buddy. This is hard for me and her because we typically are pessimistic people.
• My job- Luckily I have a job.....I love my job ( most days)....
• The guy who invented dialysis and the guy that decided to try it out on a kid
• Not having to cook dinner for Thanksgiving tomorrow.
• For having a mostly healthy baby that has a problem that can be fixed- I know way to many people that have kids that for one reason or another are going to need help and support their whole lives. I know somewhat what they feel but then again I dont because my baby will be "fixed" after transplant.
• My dialysis mommys- Yvette is has been my #1 when it comes to "venting" about Buddy. Her baby Brandon is 10 days older than Brayden. They are our Twin Kidney Babies! Laura is our newest kidney mommy. Summer is 4 mo old and on Hemo. I am so proud of Laura, she has handled this SOO well. Summer has been thru much more than Brayden had at 4 mo old. Jessica has been a saving grace for me. Logey is 1 year and 1 day older than Buddy and she is who I look up to. She has already been thru it and she is who I will go to when it comes to transplant. I am also thankful for the support groups. There are to many mommys to name but they know who they are. You guys are amazing women ( and men) and you have done such a wonderful job of "growing" your kids!

Last but not least!!!!!!!!

I am thankful for starting the transplant ball rolling today!!!!!!!

Brayden is now 8.76 kg ( 19lb 3 oz). We have started the ball rolling with the insurance companies etc. Next step is to start testing Brayden and Kyle and then talk to the surgeons etc.

Today we saw Dr. Malagon and she was so happy that he looks so great!!! Since changing to Nepro/ Duocal ( his formula) his potassium is actually way low today. It was 2! She considered giving him some potassium but I asked her to hold off and I plan on giving him some bananas today. We also stopped his Bicitra because another lab...CO2 was high. And stopped his Tums because his Calcium is still high. So, we are down to 12 from 18 now!!!!!

I am thankful today. I am thankful everyday but today it just hit me a little harder than normal.

I'm a bad blogger....Sorry

So.......
Since the last time that I posted anything about our life. It has changed alot but then again not much has changed.

Brayden is still of dialysis 9 hours a day, 250cc fills with 180 last fills. He is still the funniest kid on the planet. He still throws up a ton and goes back and forth from eating and not eating.

A few weeks ago he learned to say Mama and Baba and then he had surgery and promptly forgot how to say mama and baba but learned to say Dada and now that's all that I hear! Dadadadadadadadadadadadadadadadada!!!!!! He is the smartest kid on earth! Im serious, I have the smartest 8 month old ever! ( I know everybody says that LOL) He watches what Kyle does and tries to copy it, he waves bye bye, he nods yes and no, when you say Wiggle-wiggle-wiggle he wiggles all over. He is sitting up on his own and starting to put some weight on his hands and knees. Physical therapy is doing amazing things with him!


On the other hand, Our dialysis friends havent been doing so hot lately.

Brandon, Buddy's "twin", has been in and out of the hospital a whole bunch lately. He got a peritonitis ( infection in his bellly from dialysis) and it turned out to be worse than they thought. He had to go onto Hemodialysis ( blood dialysis). He had some complications with that and ended up with an infection in the IV lines that they used for his Hemo. Yesterday they put in the Peritoneal dialysis cath back in and in a week or so they are going back to PD instead of Hemo. Because of his frequent infections, Dr. Malagon wants Brandon to have his transplant much sooner than expected. He is 8kg ( 18lbs) now and the surgeons would prefer him to be 10 kg (20lb). Cincinnati Children's has agreed to look at him soon and hopefully will start the process in the next week or so.
His momma is one of my closest friends and she has just been soooooo stressed out. I feel like Brandon is a part of me too. I just cant imagine how they feel.

Summer, who you guys have never heard about, is a 4 month old lil sweetheart. She is new to our dialysis clinic. She was born on time but had to have both of her kidneys taken out because of a genetic disorder that caused tumors on them. He has been on both the Hemo and PD dialysis. Last week, she "crashed". Her oxygen was very low and she had to go back on the ventilator because they found a hole in her diaphragm from the PD ( this is a fairly common complication). She was doing better then crashed again. They think she might have an infection or the flu. Her momma is taking all of this like a champ. I guess we dont really have a choice to take it well or not. We are all in survival mode.






I am thankful that I have a baby that is as healthy as he can be. A happy baby and a baby that is at home with me. When I get on my pitty party for myself, I think of all the other amazing parents that are going thru more than I am at the moment. Please pray for all of our babies!

I will try not to be such a bad blogger.

I stopped lying to myself

I stopped lying to myself the other day. I decided to own up to myself and admit to me that I AM depressed. Im not saying that I am super depressed but I am admitting that I am somewhat depressed and now have to deal with it. Who wouldnt be in our situation? NO, we dont have it as "bad" as some other families do but yes, our situation does suck sometimes.

Kyle has gone to see a doctor about his back pain and we all have come to the conclusion that his pain is basiclly coming from his depression also. Yesterday he started meds and hopefully he will start feeling better in the next few weeks.

I on the other hand am still on the fence about starting meds. I actually think that part of my issue is my hormone levels. I have had low estrogen before and it made me feel bad. I plan on seeing if that is the cause or not and fixing it if it is and if not then I will see a doc about gettin some sort of antidepressant.

NO, I dont think that meds are the LONG term answer but I DO think that it will help Kyle and I thru this time in our lives.

Dont get me wrong, I love my son but sometimes his "medically challanging" self gets me down. I try to stay positive when he is around but it seems like that when it is just me and Kyle then I let my guard down and that " down" person is ALL that Kyle ever gets to see. I feel like I can be "myself" with him but I also dont want him to always see that part of me.

I struggle with that every day. I also struggle with the pesimistic side of me that asks if I will ever be "stress-free" or atleast semi stress free. What if my life is doomed to be so stressful that I am depressed my whole life? I have seen that happen and dont want to be there. I will do anything it takes to NOT end up there.

I try to come out of my Deep Dark Down place quickly but soemtimes it is a serious struggle.


I am a semi-religious person but I find myself asking God to help me thru this day more and more. God, Please help me put my life back together. Please let my marriage be what it was before all this stress. Please make my son feel better. Please Please Please. I just dont know how to do it so i am leaving it up to you. Help me!

My baby, My life, My world

Its Sunday morning and we have been up since 7am. Well, I have been up since 7. Brayden woke up screaming this morning from gas pains and is now fast asleep beside me on the couch. As I sit hit and type, I am feeding my sleepy baby thru his G tube.

I have come to realize and accept that my world no longer revolves around me and Kyle, but it revolves soley around Buddy. I have know this for a while but for some reason it just hit me. My thoughts a constanly of him. I am always thinking about something....when meds need to be refilled, when his next appt is, how many calories has he gotten today, when is his next appt ( nephro, uro, GI, peds), is it Thursday? ( thursday is Epo day), who is supposed to keep Buddy on my next work day, what is post transplant going to be like, will he be a "normal" boy?
???????????????????????????????????????????????????????????????????????????????????????

Seems like that is ALL that is on my mind. Some where in the vast abiss of my mind, I manage to keep ALL of his latest lab values, formula needs, work schedule, kyle's work schedule, birthdays, anniversaries, drug doses, weights, kilograms, medicines, work stuff, home stuff, and a BILLION more things. I am trully amazed at what my brain seems to hold! But that is beside the point. My point ( hidden somewhere in this blog of rambleing) is that I feel like I have to remember so many things and I am terrified that I will forget just one of them and that will in some way mess him up. I know it is not my responsibility to know EVERYTHING but I feel like I have to or somebody else might screw up.

HERE IS WHAT IS ON MY MIND

I am scared to death of transplant day.
I dont know why but I do know why....I have to give my son and the love of my life away to the surgeons and I dont like that feeling. I am a control freak and I dread that day more than any day I could think of. ...... It will also be a wonderful day too but I am scared to death!!!

Will my marriage ever get back to what it was?
I spend so much time and energy thinking/worrying/ doing things for Buddy that I dont have enough energy to spend with Kyle. He is suffering from it and I just dont know how to find the time to spend with him without cutting out something for Brayden. I just dont know how it is done

Will I ever be able to loose this weight?
I weigh now as much as I did the day I delivered my baby boy. I had lost back to pre pregancy weight but have ballooned back up and it is killin me. I just dont have enough hours in the day, If I could just work out a few min a day I could loose it but that would me I would have to get up at 330 every morning.....that aint happenin!!
Will Buddy be "normal" after transplant?
I just dont know about all of this stuff, I just wish I could have a magic eight ball that would tell me what was going to happen.
I wish all of my " dialysis" mommy friends could get together....how do we do that?


Well, My hubby just woke up and the baby is asleep so I am going to cook him some breakfast.....