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.