My "little" baby is 18 months old!!!

I wanted to try to do this every few months.  But well, things never turn out like they are supposed to.  So I will attempt to make it up. 

18 Month Stats:
31 in tall
11.2 kg
10 teeth..2 top, 3 bottom, 2 bottom molars and 1 top molar

Saying:
Momma, Daddy, Daisy, Bama, PeePee (short for PeePaw), Nan (Short for Gran), Nag Nag (what he calls Kyle's mom), Papa, BooBoo, DooDoo, Ball, High chair, Strawberry, Lady Bug, Goose, Horses, Tricycle, Fish, Swing, Num-Num, Bite-Bite, Cookie, "these" (what he says when he wants teething tablets), Truck, Deer, Kiki (kitty), Butterfly, Tractor, Apple, Hat, Baby, Circle, NoNo, Bubbles (bath), Cheep cheep (bird), Tree, Book, Bah (short for daddy's dip can, his favorite toy), Get it, Mean, ByeBye

How's a _______go?
Cow: Boooooo
Chicken: Boc boc
Sheep: Baaahhh
Deer: snorts thru nose
Daisy/Puppy: rah, rah ,rah
Grandma: Nag nag nag
Pig: makes a noise
Goat: Beeeeeee
Frog: Rib (he shortens the bit part)
Bunny: opens and closes mouth with a mean face


Other things you say:
Who's Gran's baby?.....pats himself and says me, me ,me
Not I said the duck/goose/pig..........really sounds like Naaaaahh IIIIIII duck/goose/pig
A big fat hen........sorta sounds like it, but not really, that's what he means anyway


Books you read:  Big Red Barn, Color Book, Brown bear Brown bear, baby animal book

Things you do:
Dance....shakes head up and down, bounces on butt
Jumpy....... starts "dancing" when he wants to get in his jumpy seat
Get it........points and says get it when he wants something
How big is Brayden?.................raises arms over head
No...........shakes head No when he knows he isnt supposed to do something or if he is asking if its okay
All kids are "babies"
Will wear your mask in the hospital.
Loves to swim
Gets violent and throws things when he gets sleepy
Want a punch in the nose?.........leans forward so you can punch him
Mean as a snake........makes a mean face and says ssssssssssssss
Knows where eye, ear, nose, mouth is


Motor skills:
PT twice/week
Crawling everywhere
Pulls to stand on anything
Walks around the table and couch
Can crawl up stairs

Speech/Eating:
Goes to Rene once a week.  Now Parker is there with him. 
Will drink water from a straw, sometimes Pedisure
Plays in pudding, likes chocolate best
Will eat some oreo pieces
Will eat a few bites of marshmallow
Loves teething tablets "these"..I have started changing them out with small pieces of soft peppermint


Meds and medical stuff:
Labs once a week
Malagon once a month
Had 1 visit to inpatient for Diarrhea and low K, got IVF and came home next day
4 cans of Pedisure (changed from Nutren Jr because of K content) with 1.5 tsp of baking soda
750 cc of Hydrating solution at night (1 quart water, 1/2 tsp baking soda 1/2 tsp salt)
Prograf 1mg 6a-2p-10p
Prevacid 15mg 2xday
Zantac 22mg 2xday
Prednisone 3mg daily
Iron 1ml daily
Bactrim 2.5ml M-W-F
Stopped Valcyte because of bone marrow suppression and multiple negative CMV/EBV
Cellcept on hold for bone marrow suppression (WBC down to 2, H/H down to 8/27)


Life is good.  He is progressing faster than every before.  He is the joy of our lives.

I am begining to think about starting to plan a Kidney Mom Convention for next year so that all of us mom's that love and know each other so well can actually meet in person and get to meet "our other kids". 

Here is a video that shows off some of his "talents"

Sometimes I just like to read

I have recently been guilty of reading other blogs of other peoples kids and other people and their medical issues. Why? I'm not completely sure but I think that it has to do with the fact that our life is no longer "medically interesting". Not saying that I don't love that fact but it is what we have lived since I was 20 weeks pregnant. I find myself being increasingly interested in Cyctic Fibrosis. I was touched by a mom (who's blog I read daily) that spent the last 7 years of her life fighting for her son's life. Conner had CF and a mild Prune Belly- this made it extra hard for him becuase he didn't have the abd muscles to cough good to get the junk out of his lungs. Anyway, Conner lost his battle 6 Thursdays ago. That's how his mom measures time- in thursdays- I can remember a time when I measured everything in tuesdays. That was when he was born, when he had several surgeries, when his nephrology appts were, the day he was transplanted. Sarah,Conner's mom, wrote the most amazing tribute to her sons life. It was gruesome to live his last day thru her eyes. I cried my eyes out reading her post because I could have been there. I still could be there one day. Do I want to think about that,No, but it does remain in the back of my mind.

So why am I rambling on and on about other people? I'm really not sure. Maybe because I almost miss that stressful part of my life, maybe mom's like me and so many others I know need that bit of stress to feel "normal". I know that I have always thrived on a moderate amount of stress but I understand now what the psych people tried to tell me before transplant. They said- depression is common after you donate an organ- I wasn't worried about it and still am not depressed but do see how someone could get depressed after surgery. Its a life changing event- our super busy lives we changed to a "normal" busy life! I sorta felt like this change was comparible to when I left hawaii and came home. Nothing was the same and I had to releatrn things all over. Its the same with Brayden, I have had to learn to not worry so much, not have my brain so tied up with med schedules, calories, dialysis, ultrafiltrated and labs. I now only have to worry about getting formula and meds ready for the grandparents and playing with my newly transplanted-full of energy- learning new things everyday baby.

My life has changed. It is for the good but it is change and change is wierd.

Night people

Being "normal" sucks

Im not so sure that I am cut out to be a Mom of a "normal" kid. 

I called Brayden's GI doc because he has been throwing up at his night feeding.  Not everyday but about every 3 days.  When he does throw up, it smells like pure stomach acid.  Its not necessarily the throwing up that is bothering me, its the way he cries after he gags before he throws up and the way he looks at me afterwards and seems genuinely scared.  I worry about his esophagus and nasal passages cause all that acid cant be good for them!  So anyway, Dr Kendall called me back and we talked a few min about what I was seeing.  Brayden is already on the maximum dose of Prevacid the maximum times a day (15mg 2xday) and the same for Zantac (22.5mg 2xday).  There is no place to go with medications.  Dr Kendall suggested that we have another EGD (scope down his throat and into his stomach) to see if there is any further damage and a Ph probe while he is on his meds to see if the problem is really reflux or not. 

I am on the fence about the procedures.  1 part of me says just do it and lets get him fixed but the other part doesn't want my baby going back into the hospital and going under anesthesia again.  After I got off the phone with Dr Kendall, I called Kyle and told him what he said.  I was balling by the end of the conversation.  My lil boy is going to have to have "surgery".  No, its not his first time having surgery by no means but yes, it will be his first "non transplant" related surgery since transplant.  We were just getting to be a normal, mostly doctor and hospital free family. 

For some reason, I seem to be freaking out about this WAY more than I should.  Seriously, Brayden has had a weird fever for the past few days and I didnt even freak out about that.  Fever can be a very bad thing in a transplant kid and I am just taking it in stride.  Thinking about him having the EGD is really getting to me! 

I guess this is what parents of healthy kids go thru huh?  This is what they feel like when their kid gets tubes put in their ears or has their tonsills taken out.  No, its not a lifethreatening surgery but it IS surgery. 

Having Brayden has taught me more about how subjective pain and stress are.  Parents say to me all the time, "Why should I complain to you when you have so much more going on that I do"  Well, because high stress and sick kid was "my normal" and surgeries and complications were just an everyday thing to us.  The thing that is stressing them out is however bad they say it is.  Just because you are freaking out over your kid busting his nose and bleeding all over the place doesnt mean that you are one of those crazy moms....it means that this is a big deal to you.  Up until April, nothing but transplant was a big deal to me.  Now, it seams that the smaller things are bigger stressors to me than I thought they would be. 

Oh well, such is life.  As I always tell people when they ask how I do it, "Adapt and Overcome"  That's all we can do.  Otherwise, we will drive ourselves crazy trying to fix everything. 



On a good note, Brayden has learned to crawl a bit.  He can now crawl about 4 feet if he is really after something.  It is funny to watch!  Here comes Brayden! Everybody better watch out!

I just dont know what to feel.

Why is it that I get attached to people that I have never met?  I have just been heartbroken over this mom that I have never met losing her son.  I guess I feel a connection to these mom's that have chronic kids.  I get teary-eyed every time that I mention/think about Conner and what his mom had to go thru while holding his hand while he took his last breath.  How did she do it?  What would I have done?  That could have been me!  I could and have a chance to still have to deal with that some day.  How will it feel?  Will I feel?  Would I go crazy?  Would I lose my mind?  I just cant imagine and dont want to.  Parents are ment to bury their kids!  I know it happens but geeze, why do things happen to good people?

I am worried about our friends (some Internet some not)

Max did get some good news today.  They are moving up his transplant date to next week!  Pray all day on July 8th.  His mom will have the privilege to give life to him again.  But......it is more risky for Max than it was Brayden.  Max has small lungs as a result of him not having much fluid when he was in utero.  The major fluid they have to give him to keep the kidney healthy will make it harder for Max to breath!  I know he will have struggles but he will come out a whole new boy!  A healthy, peeing, eating, not puking big boy!!

Summer has had a hard day today.  She spiked a fever, is breathing really really fast and looks sicker.  She did get Max's old transplant date so if she is medically stable he will get her Daddy's kidney but I feel for her parents.  Laura and Dan are doing a wonderful job....I would have snapped by now, Laura did have a come apart on the docs but for good reason.  Laura, if you read this....I love you and you are amazing! 

Aiden seems to be getting better but they dont know what his deal was! 

I am a God believing God fearing person.  No I dont lead the life that I probably should but I do think that God does things for a reason.  I have accepted that I cant control anything but I sometimes find myself questioning his "motives".  God, please dont take these babies from their Mommies!  They need them like I need my lil boy!  Please Please Please get them healthy and make them feel better, Thanks...Jenny

Well, at least somebody's world isnt upside down

At the moment, its kinda hard for me to say Our life is "normal".  Not because our life is not normal but because all of our friends lives are halfway upside down. 

Kyle makes fun of me because I have become attached to all of these other kids that I have never met but as a mom of a sick kid, we tend to get attached to other mom's and their babies that have similar issues.  We can speak the "language" and they understand it without having to try to explain the little details.  Its just easy!  I know I have said it before but I will say it again...Yvette, Laura, Beth, Tara, Tiarra, Jessica, Shelly, Karen....YOU guys are what has gotten me thru this whole thing.  I just wish I could fix your kids too (those that havent been transplanted yet)

"Our" babies are having so many issues.  Brandon has had major G tube issues and had to have another surgery to fix it.  They have been in Cinnci since May 13th and will be there another 2 weeks or so.  He just got out of a 17 day hospital stay.

Summer has had to have her 1/2 parathyriod glands removed and is having heart issues that are from her fluid management and is in the PICU at Cincinnati. 

Max is in the PICU at Cinnci too, he has had a horrible month of June having to have several surgeries to fix his PD catheter when they should just leave it along and transplant him already!!!!!  His transplant date is July 27th.

Aidan is having some weird breathing and blood pressure issue and has been in the PICU for several days now and they dont really know what's going on.

Matthew has had some GI issues that they are working out but have scared Karen to death with just the mention of cancer.

Luckily, Bryan, Finn and Logan have been doing ok (besides Finn and Logan being toddlers and brats just like mine)

We (as in the PruneBelly community) lost a little fighter this week.  Conner was 7 years old and is the only person in the world to have Prune belly and Cystic Fibrosis.  He fought long and hard but God took his suffering away and now he is breathing easy in heaven.  If you want a good cry or want to read the most eloquently written eulogy to a child, read his mom's last entry to his blog  http://www.notsobrightandshiny.blogspot.com/ it is amazing.

Brayden however has had a fairly normal month.  We are still doing labs every week.  They were a little off one week but a few days later after a few minor medication adjustments everything was back to normal.  His Prograf level was way low but we figured out why and have since fixed it.

He is progressing in his motor and speech skills like I have never seen before.  At last count, he says 30 different words...only about 15 per day but who says every word they know every day?  His motor skills are moving leaps and bounds...well, maybe not leaps!  He has figured out how to go from lying on his tummy to sitting and is SOOOO close to crawling!  His lil legs and hip muscles just arent strong enough to support his big body plus he still goes backwards when he tries to go anywhere.  He is starting to "walk" when we hold most of his weight off of the ground and all he has to do is step.  He can now stand for a min or 2 at a time and almost balances by himself.  PT is doing wonders and going 2x week has helped SOO much.  Speech is working (or something is) because he has taken several bites of Oreo (double stuff cream) and liked it.  He has learned to drink out of a straw and does pretty good at it.  We still do the G tube thing but now he is getting only 4 feedings during the day and 2 bolus feeds at night.  I think he is actually starting to "feel" hungry for the first time in his life. 

Its a weird thing that only a few parents in the world understand when your kid doesnt want to eat.  Eating is such a natural thing but my kid doesnt equate eating food with getting full.  He gets full because of that lil tube in his belly.  We are "teaching" him to eat and to like food.

Otherwise, life is good.  Life is NORMAL!  We only go to the doctor once a month now.  We have never gone this long without seeing Dr Malagon.  I still talk to her at least once a week but its just weird.  Change is good but change is slightly scary. 

Brayden is 16 months old and is 30.5 inches tall, weighs 25 1/2 lbs and has 6 teeth.  He is learning and growing just like all the other kids....Our goal when he was born was for him to be transplanted before kindergarden, now it is for him to be caught up in all of his milestones by kindergarden and he is well on his way!

Way to go Brayden....That's Momma and Daddy's little fighter!  We love you more than you could imagine!

Playing in the lake

Momma's lil cutie

Speech therapy is fun!! (and messy)

Big boy

Slightly distressed and throughly ticked off

Yesterday, I received some distressing news.  Brayden's nephrologist, Dr. Mericarmen Malagon-Rogers is shutting down her dialysis clinic.  There will be no pediatric dialysis at University of Tennessee Medical Center.  She hadnt told us yet (We are supposed to go see her next week and I figured she would tell us then) but another Mom got to it first.  I am glad she did but so sad that it is happening. 

Dr. Malagon started at UT in 1985.  Since that time, UT has done 85 pediatric kidney transplants.....85!  85 kids under the age of 18!  OBVIOUSLY there is a need for a pediatric kidney transplant program.  From what I was told, Dr. Malagon asked UT for help with the clinic, she asked to get another Peds Neprologist to help her with call and rounding on her kids.  Dr. Malagon has a family practice office also that she must share her time with.  This has become increasingly hard for her with the increased amount of kids that she has had.  The 3 youngest, Brayden-Brandon-Summer, came in last year within 4 months of each other.  Brandon and Summer ended up being on Hemo for several months and Summer was on until just last month.  She took wonderful care of these kids.  If it weren't for her, there is a big possibility that neither one of them would be here. 

If Dr. Malagon had not been Brayden's doctor, I dont think he would be where he is today.  It was always in the back of my mind that there was the possibility that we might lose our precious baby boy but it never crossed the front of my mind because of Dr. Malagon.  I never had to worry that my boy would get so sick that we might lose him, I knew that she would catch it before it got that bad.  I worried alot but I worried less because of her.

It also occurred to me that Brayden was the last pediatric patient to be transplanted at UT.  Without Dr. Malagon to do dialysis, there wont be any transplants goin on.  The new dialysis kids will have to go to Atlanta, Vanderbilt, or Erlanger.  When/If we have to go back on dialysis before Brayden's next transplant, if Dr. Malagon isnt doing dialysis still, then we will do dialysis at Vandy and then try to transplant at UT with our docs. 

Dr. Malagon will continue to see the post transplant kids but I just cant help but think that eventually there will be kids that are going to need her and she wont be able to help them because she is over-extended already.  Dr. Malagon asked UT for help, they wouldnt help her.  She asked East Tennessee Children's Hospital if they wanted to take over the dialysis program and they declined.  SO, the dialysis program will go away. 

Its a shame and I would say almost a crime that these huge hospitals wont help her out and save so many more kids lives.

Im just glad we got to be fixed before she had to quit!  Thanks Dr. Malagon

Time goes by...

Wow, time flies when you have a "healthy" kid!  Yesterday was 1 month since I got to give my baby boy life, AGAIN! 
For those of you that havent been able to keep up with the day by day, here is what happened.

We were admitted to the PICU the night before so that dialysis and labs were done on time for Buddy and so that I could be ready for surgery very early.  Even if I would have been able sleeep the night before giving my son my kidney, I wasnt able to because the nurses had to come in and do something to either me or Brayden almost every hour. 

The morning of surgery was very hectic, surreal, happy and scary all in one.  I got up about 4 am and took a shower in Chlorhexadine, which is an "anti-germ" solution.  Then, we gave buddy a scrub down with it after I got him off of dialysis.  About 600, the transplant nurses, docs and family started coming in and checking on us.  Im not real sure what time we went down to the holding room but we rode down on my bed.  THIS is where I became a basketcase.  I really started losing it when I got on the bed and my mom took our picture (which ended up being the only picture taken that day).  We went down to the holding area and Kyle and I waited for the time to come.  They took me back first.  I said hi/bye to my mom and Kyle's mom and then thankfully the Anesthesiologist gave me a ton of Versed (sedation medication).  That is the last thing that I remember until I remember waking up but not being able to open my eyes but somebody saying that Brayden was out of surgery and was peeing.  After hearing that, I went back to sleep for a while. 

Brayden was in surgery for about 3 hours.  They said the "cold time" for my kidney was only 10 min or so.  They put the kidney into him and it started making urine immediately!  Brayden went to the PICU and there is where the termoil began for Kyle and the rest of my family.  For one, they got kicked out of the surgical waiting room because there were so many of them, then they ended up in what was supposed to be my room and the doctors closed the curtain on them.  From what I am told, the first 12 hours were VERY touch and go for Brayden.  The doctors wanted his blood pressure about what mine was so that the kidney didnt go into a shock sort of state or the blood vessels clot off.  This was the main problem.  His bp was very low.  They put him on a drug to increase his bp but they couldnt give him to much because to much would have hurt the kidney too.  They couldnt give him as much sedation as they needed to becuase the sedation and pain meds lower his blood pressure to.  That is one thing that I am glad that I didnt see.  I would have flipped out if I would have had to watch my baby struggle like he did.  Luckily, he wont remember any of it.

My room was a whole other ordeal.  I was supposed to be able to be in the PICU with Brayden.  They have 2 rooms only seperated by a window that were specificly built for the transplant people.  There was another sick child that ended up being sicker than he was supposed to be and so I wasnt able to be in that room.  When I heard that news, I was pissed and scared and worried all in the same moment.  I ended up on the transplant floor.  The only good thing was that they did get me a video feed that was in my room so that I could see him at all times while I was in my room. I stayed until Friday and was discharged.  They had said that I could stay as long as I needed to but the PICU had saved us a room off of the back of the PICU for us to stay in as long as we were there.  It was like a mini hotel room with a hospital bed for me. 

Just a side note: Brayden was the 6th kidney trasnplant in 5 days at UT.  5 other adults got kidneys from non-living donors.  That is crazy....5 people were on the list and 5 people got kidneys in the same hospital in 3 days!  Needless to say the transplant team was tired but luckily they had no surgeries on Monday so they rested up for Brayden's surgery on Tuesday.  We ended up meeting one of the 5 at follow up in the transplant clinic.

I got to my room about 5 pm (the delay was because of the room issue).  By 6pm I had Kyle wheeling me down to see Buddy.  It was really hard for me to see him like.  At this point, I wasnt very trusting of the PICU nurses and there was alot of animosity between Kyle and the transplant people because of the tension times earlier.  I saw him for about 30 min then had to go back to my room to rest.  Kyle stayed with him until about midnight.  Kyle was so good. I am so proud of him.  He took wonderful care of me and Brayden the whole time. 

The next day was mostly unremarkable until on Thursday, I think, when we got down to the PICU for the first time that day, his oxygen sats dropped.  The monitor alarms were silenced and I happened to look up at them and saw that his sats were 75%.  They started bagging him but couldnt get them back up.  THIS was where I found out what if felt like to be a mother that couldnt do anything to help my baby boy.  I flipped out..I backed up in my wheelchair and let them work but Im telling you, that was the worst feeling I have ever had. 

He ended up having what we figured was a mucous plug in his left lung.  On Xray his left lung was whited out (which ment his left lung was full of fluid and phlegm). For the next few days he got a bunch of breathing treatments and CPT (suction cups beating on his chest to loosen the gunk).  We noticed that during his breathing treatments with Albuterol that his bp would drop to almost dangerous.  It happened almost every time but we just thougtht it was just a fluke.  One day that weekend, a Pulmonologist from East Tn Children's came over and did a Bronchoscopy (take a scope and look at his lungs) but couldnt get the scope down the breathing tube because it was so small.  We were sitting there watching him and he asked for albuterol, the nurse Kelly told him that he dumped his pressure with albuterol but he didnt listen and put a whole huge dose down the tube and guess what....his bp went into the 50s.  He was almost off of the medicine to bring up his bp but Kelly had to turn it to the maximum dose just to keep his bp up.  It stayed low for almost 8 hours.  During that 8 hours, his urine output dropped to almost nothing.  Dr Malagon was in there watching it and when we gave more lasix (to make him pee more) and he didnt have any output, she went into panic mode.  Our thought was that the kidney had clotted off becuase his bp had been so low.  She ordered a ultrasound of the kidney and the transplant people brought in a dopplar (like they use to listen to a baby's heartbeat inside the uterus) and the kidney seemed to be okay.  The US showed the same thing, the blood flow was perfect.  I thought that maybe his foley catheter has maybe clogged up and that is why he didnt have any urine.  I could feel his bladder and I told the transplant doc that but he said that wasnt it and wouldnt change the foley out.  Dr Malagon (who is his regular doc and trusts me) thought the same thing.  He went down for a Mag 3 scan (test to see how well the kidney is fuctioning) and it came back perfect and his bladder was FULL!  When he got back, we changed the catheter and whataya know! Urine!!!  I was so happy and pissed off it was rediculous. 

After that it was mostly smooth sailing.  His lung was clearing some and on Tuesday he was ready to come off of the vent but the doc that was there was a very conservitive guy and didnt take him off until Wednesday.  FINALLY, after 3 hours of him fighting the tube because the uberconservative doc turned off the sedation way early!  When the tube came out he did great!  He cried but had no voice and then he saw his clothes line and reached up and grabbed it.

He needed very frequent breathing treatments to help with the swelling in his throat from the tube being there but on Friday we were planning to go home....Well, Friday morning got here and when we got to his room he was struggling to breath.  We thought that maybe he just needed one more treatment and he would be okay....then he didnt get better and started getting worse.  He looked like crap!  It was one of the scariest times I have ever seen my baby.  He was sick by even sick standards.  Blood and sputum cultures were drawn and we assumed that he had a pneumonia.  His temp had gone up slightly over the whole day and night before.  Dr Malagon started him on some MAJOR antibiotics and we were in for atleast the weekend. During all of this his sats were down and so I put some oxygen on him again and low and behold he perked up and became a baby again instead of a blob of barely breathing kid. 

He was on oxygen until Saturday night.  By Sunday morning he was back to himself and playing in his crib.  We thought we needed some "normal" so we put a blanket in the floor and got in the floor and played for a while.  It was great! 

On Monday, we came home.  We got home about 2 pm and boy was it good to be home!  The house was clean because my friend Wendi got her cleaning lady to come clean while we were gone.  We were home, a family home again!

Since then it has been a blur!!!  We have seen Dr Malagon twice a week but now we can go to seeing her every 2 weeks.  She is so proud of how he is doing.  On May 12th, he got his PD cath out and now he is cordless!!!! 

He has learned so many things since transplant.  The transformation is crazy!!  He is talking more, more mobile and more aware of his life!  He hasnt thrown up but a few times and at times he will eat actual baby food!  Its crazy!!!  He has gone to completely different meds and that is taking some getting used to but it is SOO much better than before!

We start physical therapy again on the 18th and I am going to make a prediction that he will be walking in 6 months! Maybe even earlier!!!  Kyle went back to work yesterday and I go back on Monday. 

Life is wonderful! 

More updates as they happen!

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!
_____________________________________________________

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!
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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!

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.