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!
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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!