Sunday, January 1, 2012

Happy new year

Not much to say except LET'S HOPE FOR A HEALTHY NEW YEAR.

Wednesday, December 21, 2011

Working mom

Sometimes I long to be a Stay At Home Mom.  Sometimes, I wish that I never missed a single moment with my kiddo.  Sometimes, I feel like a failure as a mom because I am not home more. 

Then I realize that I am a good mom.  I realize that I am going to miss a few moments here and there.  I realize that because I am not home every minute, that I cherish the times I am home even more. 

I work at least 40 hours per week and have then entire time that Brayden has been born (except the 13 weeks I was on maternity leave and he was in the NICU and 1 month for transplant).  I have a fairly important job within the Emergency Department and the hospital itself.  I have things that I do that nobody else in the whole hospital know how to do.  I have responsibilities.  I also have a responsibility at home to be a good mom, a great mom.  So I do both. 

I have been blessed with an amazing family.  My mom, my lifesaver, has been there since day one to be a Stay at home Gran.  She keeps him 3 days a week and Kyle's dad keeps Brayden 2 days a week.  It is very hard on them, a highly intelligent, high energy 2 year old will wear anybody down!! 

Without my family to keep Brayden, I would have been forced to be a SAHM or Kyle would have to stay home and I work.  Daycares just dont have the facilities to care for a child with chronic illness and Brayden didnt/doesnt qualify for many services that other special needs kids get.  So, I work.  He gets to play w his grandparents and be happy and I work. 

I work and I love my job but sometimes I get down on myself about not being one of those "crafty" mom's .  I was trying to do an art project w Brayden the other day and it wasnt going to so well.  Kyle came to help and his project looked great.  Brayden was having fun but not because of me.  I felt like a failure.  I felt like a complete failure as a mom.  It was so bad that I cried!  After my little pity party, I put my big girl panties back on and tried again and it turned out pretty well.  But still......I sometimes wish that I was one of those moms.  I wish that I was the cool mom that came to class at school to help with art projects for the class.  Maybe one day I will be, but for now I am mostly content with being a Working Mom.

Saturday, December 3, 2011

Well, its been a while

So, I am not a good blogger.  I know, I know I should have posted SOMETHING since Brayden was 18 months old but when 98.8574757% of your family and friends are on Facebook, you tend to rely on that to get infomation out. 

So here is what has happened since Brayden was 18months old. 

In September of 2010, Brayden had a routine EGD because his GERD was annoying me and I wanted to make sure there wasnt any damage.  The EGD went well and we deaccessed his port and left to go shopping in Knoxville.  By the time we had gotten done at the mall, he was throwing up.  We figured it was just him puking after getting anethesia.  Later on that night, the puking continued regardless of Zofran and clear fluids.  We ended up going to UT's ED and got admitted for Pancreatitis!  After further testing and a few cross words between me and his GI doc (whose first words out of his mouth after us getting admitted were "This isnt my fault") we found out that the pancreatitis and vomiting and pain were due to a duodenal hematoma.  It was 10cm long and caused a complete small bowel obstruction.  He had a GJ tube placed so we could still feed him and we went home only staying 5 days.

A week later, he spiked a temp and grew out Pseudomonus in his port.  I had asked my mom to stay with him while I went to a Peds confrence in Pigeon Forge .He had been doing okay for what he was working against.  He seemed to be doing well on the abx that Dr. Malagon chose. We were still waiting on sensitivity.  I got back about 6pm and mom said that he had spiked a fever just a few min before I got there.  By 8pm, his temp was 108 and we were franticly calling around to find somebody to take out his port.  The new peds surgery guy refused to and go an ear full from Dr. Malagon and she got Dr. Grandas, transplant surgeon, to come in and do it.   His port came out around 1030 and he felt a million times better once he woke up from anesthesia.  The sensitivy came back and nothing that was oral would get rid of it so we had to do something to let him have IV access.  He got a IJ central line that would stay until he could have a port put back in.  The day before surgery, he got a temp and so Dr. Fowler changed that one out for a subclavian and a week later, his new port was put it.

Between October and March he got pancreatitis 2 more times and we finally figured out that is was the Prograf that was causing it so we switched to Gengraf (cyclosporine, an older transplant drug).  He did really well on it until September of 2011 and his Cr went from .3 to .6.  It had been creeping up slowly as soon as we starting the Gengraf but Dr. Malagon thought it was from growth, dehydration or any other reason.  When it stayed .6, I got worried and we went to the ED at UT and they wanted to send us home becuase ".6 really isnt that bad".  I demanded that we get admitted and Dr. Grandas see us on Monday.  He came in on Monday and said it was most likely rejection and we were going to treat it without a biopsy.  We did treat it with huge doses of steriods (10/kg/day of Solumedrol) for a few days and went home.   Grandas thought that the combo of Gengraf having a lower antirejection level and him having a UTI threw him into rejection.  About a week later, his Cr went up again and since Dr. Malagon was in the country again, she called Grandas and made him to a biopsy.  It showed Grade1a rejection that was only cellular and not antibiody so steriods would fix it.  A few days after that, his cr went up more and I freaked out and asked her if we could go back on Prograf and risk pancreatitis.  We had discussed it and she wanted to but Grandas had talked her out of it. 

Sometime in there we didnt access his port for 5 weeks and it clotted off.  We put TpA in it and it didnt work so we scheduled surgery to replace it and fix his granulation tissue.  Fowler got into surgery and checked it to see if it worked and it did so we felt stupid but at least got his Gtube fixed.

So, now in December of 2010, Brayden is almost 3 years old.  He is 20 months post transplant.  He is 36.5 inches tall and 31 pounds.  He speaks in full sentences and is smarter than I ever imagined he would be.  He has made all of his developmental milestones.  Our only issue is eating.  He still refuses to eat anything but I have pretty much given up on pushing him.  My insurance stopped covering his speech therapy and we cant afford the therapists fees so we just gave up.  My plan is to get him into school when he turns 3 and my hope is that seeing other kids eating and drinking that he will start to. 

Life has been pretty good lately.  I have found an amazing group of mom's on facebook and they keep me sane.  Its nice to have so many mom's (and one dad) that know what we are going thru and can understand when I need to vent. 

Okay, so I will TRY to update this thing more for those that might find my blog by accident.

Here is a recent pic of Brayden for those that wonder...

Saturday, August 28, 2010

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

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

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"

Sunday, August 8, 2010

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

Tuesday, July 13, 2010

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 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!

Friday, July 2, 2010

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. 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

Tuesday, June 29, 2010

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 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

Saturday, June 5, 2010

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

Friday, May 14, 2010

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!