To see his face....

Today, I finally got to see my son's face, his whole face.  No tubes in his throat, no tape on his face. Just his sweet lil face!  Its been 9 days since I saw just his face.

Brayden was extubated (taken off the ventilator) about 1130 this morning.  He did great. He is so hoarse from that tube sitting between his vocal cords. He cried just a lil bit but it only took him about 5 minutes to start playing with the equiptment.  Within 10 minutes, he was smiling.  45min later, he said "ball" when Gran was talking about his ball. 

I am amazed at how good he feels.  He will just be sitting there and he will start giggling for no reason!  He licked a popcicle for the first time too.....and didnt gag!!!!!!!  That is an improvement in itself!!

Hopefully we will get to go home on Friday.  I cant wait to get my baby boy back home to his bed in his new-NON DIALYSIS-room!
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This is a poem/song that my mom wrote about Brayden's time on the vent.

So Still…
You’ve been so still—while our hearts pounded in our chests
So still, while we sat and watched the monitors.

You’ve been so still—while the nurses scrambled to fix you, to ease you, to mend you, and the doctors spoke with quiet words.

You’ve been so still—not your normal wiggling self.

No noses being “beeped”, no ball held high over your head with pride,

No “Ma-ma”, “Da-ddy”, or “Dai-sy”.

No toothy little grins.

You’ve been so still—while we waited and waited,

And waited some more for 9 long days, and 8 long nights.

So still, so still, so…STILL!



You’ve been so still—while we willed you to move, willed you to improve,

Willed you to take a turn for the better.

You’ve been so still—while your Mommy brushed your hair, rubbed your back,

And cut your fingernails.

While your Daddy whispered quietly in your ear,

And your jungle monkeys danced a little dance in your music box.

So still, while we updated family and friends,

And pleas were offered up on your behalf.

You’ve been so still—while the Hands on the clock wound slowly ‘round,

Twelve, twelve, twelve, twelve twelve.

Midnight and Noon, Midnight and Noon.

Tuesday, and then Tuesday again.

And STILL you were still.

So stilll.





So still is my heart, now that you’re awake!

So at peace, so comforted, so rested!

And now that this is over, now that you are wiggling again, smiling again,

living again,

This I know, Brayden Jay:

You ARE my heart, and I will cherish you until the day that I am…

So Still.

_________________________________________________________-
My mom showed me that today, I cried.....Duh....



After Transplant, day 9, the day he woke up

Its the little things..

I have always been a details person but have never really noticed that it is the little things that get me thru the day. 
Until today..........I realized today how much I missed being a Mommy to my lil boy.  This morning we turned him over onto his belly to help his lungs expand and hopefully drain out some of the gunk.  When we turned him over, his lil naked back and butt were laying there ready for me to rub out the wrinkles and rub lotion on.  If felt so good to just touch my son's skin.  His nurse suggested the lotion and it was a really good idea.  I know that it made me feel better and it probably made him feel better too.  I cut his really long fingernails too, which had been buggin me. 

His xray doesnt look any better but I think his lungs are starting to open up and some of the gunk is starting to move around.  This morning his sats dropped and they sucked out a whole bunch of stuff.  Obviously the phazyime, CPT and turning has help alot.  Im sure that we will have some sat drops before it all overwith, the gunk has to get moving around before it can come out.  His dopamine is down to 2mcg and will be off before the day is over.  His FIO2 was up to 100 again but Im confident that they can wean him back to 40% like he was last night.  His urine output has been great since the diamox and most of the swelling in his face and body is gone.  That should help his lungs alot.  Potassium is just a lil low with all the urine output but Dr Malagon changed TPN orders so that should correct itself. 

I stood up for a lil over an hour today so Im gonna rest for a while.  Im trying to get the transplant resident to come see me when he comes to see buddy so he can give me the goahead to take these steristrips off that are blistering me.  Im trying to be a good patient. 

I have learned that hour by hour, day by day things change so we will see what happens.

And Tuesday came and went.....

Well, Tuesday morning got here.......and flew by.....now its Saturday morning and wow, what a rough couple of days.

Tuesday morning we woke buddy up after his dialsyis finished, bathed him in special soap, the family got there and poof, we were off to holding.  It was like a dream, I dont remember about half of it....everything moved so fast.  I went to surgery, then they took him back.  That was the hardest part, leaving my baby boy to go back to surgery and worrying that something was going to happen to him while I was in surgery too. 

We made it thru surgery, had some bed issues in the PICU so I couldnt stay in the PICU with him as planned so I went to the 6th floor but they got me a video monitor that helped out alot.  He has had some kidney issues, lung issues, fluid issues but most are to be expected. 

I really dont have time to write all of the details but I will for those of you that will be going thru this soon.  As for right now, I am focused on staying positive while my lil man is sedated on the ventilator. 

Come Tuesday morning....

IF Tuesday morning ever gets here....It will be the one of the best and most scary days of my life. 
IF Tuesday morning ever gets here.....It will be 413 days since my baby boy was born. 
IF Tuesday morning ever gets here.....We will be getting ready for Brayden to get his "new" kidney. 

There were so many times in those first few weeks of Brayden's life that I wondered if we would ever get to Tuesday morning.  When we first started this journey, we were told that if Buddy got his transplant by age 5 we would be lucky.  I didnt accept that and yes, I pushed him harder than I probably should have but we are here and he is healthy!

The past few days have been suprisingly low stress and VERY laid back to me.....I was asking myself today...why have the past few days been so easy?  Then I answered myself.....................Calories dont matter, how much he eats doesnt matter, how much he throws back up doesnt matter, that's why.  Just a few more days, I thought, and life will be a lil different.  The past few days-didnt matter! At least on the medical side of things...

The past few days have been INCREDIBLE!  Brayden has been in the best mood!  He has been SO funny.  Kyle has been off and we have hung out and played around the house.

Just a few numbers that float around in my head all day...

Brayden's birthday 2/24/09
Birth weight 5lb 5oz
Brith length 17 in

Weight now  22lb (10kg)
Length now 29 in

Normal potassium 3.5-5.5
Lowest potassium 1.8 
Highest potassium 7.4

Normal sodium 135-145
Lowest sodium 121
Highest sodium 156

Normal BUN 7-20
Highest BUN 89
Lowest BUN 16

Normal Creatinine 0.2-1.0
Lowest Creatinine 1..22
Highest Creatinine 4.6

Total days on dialysis  278
Total hours on dialysis 2286 (13 weeks/24hrs/day)

Total number of times under anethesia  10 (counting transplant)
Total procedures so far 16.....PUV resection, PD cath placement, Gtube placement, L inguinal hernia repair, R inguinal hernia repair, L Orchiopexy, PD cath replacement, Rectal Biopsy, PD cath out, PD cath #3, Port placement, EGD, Ph Probe Study,  L nephrectomy, R nephrectomy, Bladder augmentation....

Number of hospital stays overnight  5  (wow, that's not many)
Number of Dr. Malagon visits  48
Number of lab draws  79

Highest number of meds  21
Lowest number of meds  12

Number of doctors he has  7 ......  Malagon-Nephrology,  Hill-Urology, Fowler-General Surgery, Kendall-Gastroenterology, Treece-Peds, Grandas-Transplant, Goldman-Transplant

Wish us luck, IF Tuesday ever gets here!

13 days to go!!!!

Less than 2 weeks to go for transplant.  We went to the doctor today, well actually 3 doctors today.  Saw Brayden's kidney doctor and she is so impressed at how good he is doing.  Saw the urologist that fixed his bladder and he is very pleased with how well he is doing.  You know, Me and Mom were talking today and we said that these past few weeks havent been as horrible as we thought they would be.  I expected dialysis to be a pain and for him to be sicker than ever but he has been AWESOME.  Besides the normal puking business that he does, things have actually been easier.  I dont have to worry about him being under hydrated and throwing all of his labs out of wack, I dont have to try to get as many calories down him as I can, since he can only have a certain number of ounces a day, I dont have to change as many diapers as we did before since he doesnt pee.  What HAS changed is that we have to put a catheter into his bladder and wash it out with saline 3 times a day, we have to do dialysis every day instead of 6 days a week and his BUN and creatinine are higher than they have ever been, but that is to be expected since he has NO kidneys now!

13 days from now, life as we know it is going to change drasticly....FOR THE GOOD!!!!!!!




Im not nervous YET, gimme the weekend before and I will be a nervous wreck...Not about my surgery but about after his surgery.



More later. 

Just call me MURPHY...

Brayden before surgery #9

Incisions: Bladder augment with foley draining blood and Right side neprectomy incision (matching one on the left side)

UGLY kidneys. They are about the size of walnuts. They should be at least twice that size and smooth. They really should look like kidney beans.

Murphy's Law: Anything that can go wrong, will go wrong.

Its decided, I am going to change my name to Murphy.

We are 1 week since Brayden's nephrectomy and bladder augmentation and so far we have had 5 glitches. 2 minor and 3 major ones.

1. The first night that we came home from the hospital, I realized that the solution that they gave us to use did not fit our dialysis machine tubing. So, I had to manually fill Brayden up for his last fill using syringes. (not the best situation even if I did do it as sterile as possible)

2. He has a UTI. He has a foley catheter in his bladder that we are irrigating with saline 3 times a day. We have to do this because he has a "dry" bladder since he doesnt make urine because he doesnt have kidneys anymore. Everytime we open the catheter to air, the risk of introducing bacteria is there. So, hence the UTI. I noticed yesterday that he winced when I was irrigating it and so I took some to work and saw he had 10-20 White blood cells. I called the urologist who said culture it and I thought it would be okay to wait until today. Well, Mom was keeping him and he was fussy, sleepy and listless so I had her bring him to me. I irrigated his foley again and this time the WBC's were "to many to count". He was super super fussy, his color was off and I could tell he was pretty sick. That leads to #3

3. He has peritonitis too. Last night we were collecting our normal monthly specimens to take to Dr. Malagon's office today. His first drain fluid was really cloudy. We started antibiotics immediately in the fluid and it had cleared up alot by this morning. He had a "bunch" of WBC's in the PD fluid so that confirmed he had a peritonitis. We are treating both the UTI and peritonitis with the same antibiotic because we are thinking that it is the same bug, that the UTI caused the peritonitis. He is on oral Keflex and we are putting Ancef in the fluid. That leads to #4

4. We almost screwed up....Brayden will be taking Diflucan to prevent a yeast infection in his belly from all of these potent antibiotics. He already takes Erythromycin (EES). EES is an antibiotic but in very small doses works to help increase gastric emptying times. It helps with Brayden's digestion and throwing up. Well, EES + Diflucan = REALLY BAD If you put them together (even with in 24 hours of each other) then they have a reaction that can cause cardiac dsyrhythmias and sudden death. SOOOO, we wont be starting that until tomorrow night (36 hrs apart).

5. Transplant people called today and Dr. Grandas has to go out of town the day after transplant was scheduled so now they pushed it back a week. I guess it isnt that bad because he has to be infection/antibiotic free for 2 weeks before they will transplant anyway but still. I was counting 4 weeks from yesterday and now I am back to 5 weeks from yesterday. It just sucks.

Otherwise, things are going pretty good!! This peritonits has really kicked his butt this time. Last night he woke up 5-6 times crying because his belly hurt. He then woke up screaming at 330 this morning and nothing but me holding him while laying on the couch would make him stop so, needles to say, we slept on the couch last night.

He was in a good mood for about an hour today. He smiled and played a little bit with the girls from work. Now, he is sleeping in his swing (that he is WAY to big for) peacefully. Yeah for swings!

I know all of the other kidney kid parents know what I am feeling right now. Although it seems kinda bad at the moment. I know other kids that have it FAR worse than we do. My mom tells me all the time what a wonderful mom I am......I may be a wonderful mom but wouldnt any mom do the same thing for the miracle that they brought into this world. Even mom's that aren't biologically related, would give their lives for their babies.

I am thankful that we have had such a smooth sailing since May of last year. I guess God thought that I would handle all of this better in small "bad months" than a lot of little issues all of the time. Works for me!!!!! As long as my baby gets what he needs, I am willing to do anything to get it for him.

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!