Today I am thankful........

Today I am thankful. Today I am extra thankful. Tomorrow is Thanksgiving so I feel compelled to tell all of the things that I am thankful for. Bear with me.......

I am thankful for

• Dr. Malagon- without her Brayden wouldnt be here with me.
• My husband- he has put up with me for this long, even through the crying fits when I just dont think I can handle one more thing.
• My family- My mom is amazing, she has always been the one to try to look at the bright side when it comes to Buddy. This is hard for me and her because we typically are pessimistic people.
• My job- Luckily I have a job.....I love my job ( most days)....
• The guy who invented dialysis and the guy that decided to try it out on a kid
• Not having to cook dinner for Thanksgiving tomorrow.
• For having a mostly healthy baby that has a problem that can be fixed- I know way to many people that have kids that for one reason or another are going to need help and support their whole lives. I know somewhat what they feel but then again I dont because my baby will be "fixed" after transplant.
• My dialysis mommys- Yvette is has been my #1 when it comes to "venting" about Buddy. Her baby Brandon is 10 days older than Brayden. They are our Twin Kidney Babies! Laura is our newest kidney mommy. Summer is 4 mo old and on Hemo. I am so proud of Laura, she has handled this SOO well. Summer has been thru much more than Brayden had at 4 mo old. Jessica has been a saving grace for me. Logey is 1 year and 1 day older than Buddy and she is who I look up to. She has already been thru it and she is who I will go to when it comes to transplant. I am also thankful for the support groups. There are to many mommys to name but they know who they are. You guys are amazing women ( and men) and you have done such a wonderful job of "growing" your kids!

Last but not least!!!!!!!!

I am thankful for starting the transplant ball rolling today!!!!!!!

Brayden is now 8.76 kg ( 19lb 3 oz). We have started the ball rolling with the insurance companies etc. Next step is to start testing Brayden and Kyle and then talk to the surgeons etc.

Today we saw Dr. Malagon and she was so happy that he looks so great!!! Since changing to Nepro/ Duocal ( his formula) his potassium is actually way low today. It was 2! She considered giving him some potassium but I asked her to hold off and I plan on giving him some bananas today. We also stopped his Bicitra because another lab...CO2 was high. And stopped his Tums because his Calcium is still high. So, we are down to 12 from 18 now!!!!!

I am thankful today. I am thankful everyday but today it just hit me a little harder than normal.

I'm a bad blogger....Sorry

So.......
Since the last time that I posted anything about our life. It has changed alot but then again not much has changed.

Brayden is still of dialysis 9 hours a day, 250cc fills with 180 last fills. He is still the funniest kid on the planet. He still throws up a ton and goes back and forth from eating and not eating.

A few weeks ago he learned to say Mama and Baba and then he had surgery and promptly forgot how to say mama and baba but learned to say Dada and now that's all that I hear! Dadadadadadadadadadadadadadadadada!!!!!! He is the smartest kid on earth! Im serious, I have the smartest 8 month old ever! ( I know everybody says that LOL) He watches what Kyle does and tries to copy it, he waves bye bye, he nods yes and no, when you say Wiggle-wiggle-wiggle he wiggles all over. He is sitting up on his own and starting to put some weight on his hands and knees. Physical therapy is doing amazing things with him!


On the other hand, Our dialysis friends havent been doing so hot lately.

Brandon, Buddy's "twin", has been in and out of the hospital a whole bunch lately. He got a peritonitis ( infection in his bellly from dialysis) and it turned out to be worse than they thought. He had to go onto Hemodialysis ( blood dialysis). He had some complications with that and ended up with an infection in the IV lines that they used for his Hemo. Yesterday they put in the Peritoneal dialysis cath back in and in a week or so they are going back to PD instead of Hemo. Because of his frequent infections, Dr. Malagon wants Brandon to have his transplant much sooner than expected. He is 8kg ( 18lbs) now and the surgeons would prefer him to be 10 kg (20lb). Cincinnati Children's has agreed to look at him soon and hopefully will start the process in the next week or so.
His momma is one of my closest friends and she has just been soooooo stressed out. I feel like Brandon is a part of me too. I just cant imagine how they feel.

Summer, who you guys have never heard about, is a 4 month old lil sweetheart. She is new to our dialysis clinic. She was born on time but had to have both of her kidneys taken out because of a genetic disorder that caused tumors on them. He has been on both the Hemo and PD dialysis. Last week, she "crashed". Her oxygen was very low and she had to go back on the ventilator because they found a hole in her diaphragm from the PD ( this is a fairly common complication). She was doing better then crashed again. They think she might have an infection or the flu. Her momma is taking all of this like a champ. I guess we dont really have a choice to take it well or not. We are all in survival mode.






I am thankful that I have a baby that is as healthy as he can be. A happy baby and a baby that is at home with me. When I get on my pitty party for myself, I think of all the other amazing parents that are going thru more than I am at the moment. Please pray for all of our babies!

I will try not to be such a bad blogger.

I stopped lying to myself

I stopped lying to myself the other day. I decided to own up to myself and admit to me that I AM depressed. Im not saying that I am super depressed but I am admitting that I am somewhat depressed and now have to deal with it. Who wouldnt be in our situation? NO, we dont have it as "bad" as some other families do but yes, our situation does suck sometimes.

Kyle has gone to see a doctor about his back pain and we all have come to the conclusion that his pain is basiclly coming from his depression also. Yesterday he started meds and hopefully he will start feeling better in the next few weeks.

I on the other hand am still on the fence about starting meds. I actually think that part of my issue is my hormone levels. I have had low estrogen before and it made me feel bad. I plan on seeing if that is the cause or not and fixing it if it is and if not then I will see a doc about gettin some sort of antidepressant.

NO, I dont think that meds are the LONG term answer but I DO think that it will help Kyle and I thru this time in our lives.

Dont get me wrong, I love my son but sometimes his "medically challanging" self gets me down. I try to stay positive when he is around but it seems like that when it is just me and Kyle then I let my guard down and that " down" person is ALL that Kyle ever gets to see. I feel like I can be "myself" with him but I also dont want him to always see that part of me.

I struggle with that every day. I also struggle with the pesimistic side of me that asks if I will ever be "stress-free" or atleast semi stress free. What if my life is doomed to be so stressful that I am depressed my whole life? I have seen that happen and dont want to be there. I will do anything it takes to NOT end up there.

I try to come out of my Deep Dark Down place quickly but soemtimes it is a serious struggle.


I am a semi-religious person but I find myself asking God to help me thru this day more and more. God, Please help me put my life back together. Please let my marriage be what it was before all this stress. Please make my son feel better. Please Please Please. I just dont know how to do it so i am leaving it up to you. Help me!

My baby, My life, My world

Its Sunday morning and we have been up since 7am. Well, I have been up since 7. Brayden woke up screaming this morning from gas pains and is now fast asleep beside me on the couch. As I sit hit and type, I am feeding my sleepy baby thru his G tube.

I have come to realize and accept that my world no longer revolves around me and Kyle, but it revolves soley around Buddy. I have know this for a while but for some reason it just hit me. My thoughts a constanly of him. I am always thinking about something....when meds need to be refilled, when his next appt is, how many calories has he gotten today, when is his next appt ( nephro, uro, GI, peds), is it Thursday? ( thursday is Epo day), who is supposed to keep Buddy on my next work day, what is post transplant going to be like, will he be a "normal" boy?
???????????????????????????????????????????????????????????????????????????????????????

Seems like that is ALL that is on my mind. Some where in the vast abiss of my mind, I manage to keep ALL of his latest lab values, formula needs, work schedule, kyle's work schedule, birthdays, anniversaries, drug doses, weights, kilograms, medicines, work stuff, home stuff, and a BILLION more things. I am trully amazed at what my brain seems to hold! But that is beside the point. My point ( hidden somewhere in this blog of rambleing) is that I feel like I have to remember so many things and I am terrified that I will forget just one of them and that will in some way mess him up. I know it is not my responsibility to know EVERYTHING but I feel like I have to or somebody else might screw up.

HERE IS WHAT IS ON MY MIND

I am scared to death of transplant day.
I dont know why but I do know why....I have to give my son and the love of my life away to the surgeons and I dont like that feeling. I am a control freak and I dread that day more than any day I could think of. ...... It will also be a wonderful day too but I am scared to death!!!

Will my marriage ever get back to what it was?
I spend so much time and energy thinking/worrying/ doing things for Buddy that I dont have enough energy to spend with Kyle. He is suffering from it and I just dont know how to find the time to spend with him without cutting out something for Brayden. I just dont know how it is done

Will I ever be able to loose this weight?
I weigh now as much as I did the day I delivered my baby boy. I had lost back to pre pregancy weight but have ballooned back up and it is killin me. I just dont have enough hours in the day, If I could just work out a few min a day I could loose it but that would me I would have to get up at 330 every morning.....that aint happenin!!
Will Buddy be "normal" after transplant?
I just dont know about all of this stuff, I just wish I could have a magic eight ball that would tell me what was going to happen.
I wish all of my " dialysis" mommy friends could get together....how do we do that?


Well, My hubby just woke up and the baby is asleep so I am going to cook him some breakfast.....

I should have been a CHEMIST!

Well, I have decided that I should have paid more attention in college to my chemistry professors. Or maybe I should have just been a pharmacist. Its not enought that I am a nurse full time at work and a nurse full time at home and a full time mom and full time wife, I should have just ONE more thing that I am responsible for fixing. Maybe I will be a plumber or try to fix world hunger at the same time......WHY NOT!

Thats the way that I feel right now. Last Friday we went back to the GI doctor about Buddy's EGD, pH probe and Gastric emptying study. Results: pH probe was negative ( so according to that no reflux), GES negative ( so no gastroparesis, but the doc said that was wrong) and the EGD showed inflamation up the esophagus ( so he DOES have major reflux). All of that was good, so now we know that Buddy's vomiting is half kidney kid puke, half reflux puke. What we also found out was that I was giving the Prevacid wrong and he hasnt been getting any medicine for reflux for 2 months.

What gets me is this...................
How was I supposed to know that when you put Prevacid solutabs into his milk that it deactivates it? How was I supposed to know that when you combine Bicitra (sodium citrate) and Tums ( calcium carbonate) that you get Calcium acetate and wont bind the phosphorus like it is supposed to?Isnt there somebody that is supposed to check all of that......like a pharmacist or a doctor? Why did I have to reasearch it myself and call one of my pharmacists at work and ask him about it? Why didnt Walgreen's notice that he was on all 15 of his meds and make sure that I knew not to give the Prevacid in his milk, or the bicitra with the iron, or the iron and renavite before dialysis, or the tums and bicitra together or the sensipar with calcitrol or tums?

IT JUST DRIVES ME CRAZY!!!!!!!!!

Anyway, I feel better now. On top of the old refulx we now have a GI bug and a temp of 102. Fluid is clear and he doesnt feel to bad so Im not so worried.

I just wish things were simply more simple

The emotional toll.....

Taking care of my "medically difficult" baby sometimes takes a toll on my brain. The other day, I was driving down the road and became overwhelmed with emotion.
I was thinking about the day that Buddy would get his transplant. I was happy that my baby boy would feel better but I am also scared to death that somthing will happen to him and I will loose him. That moment was when I realized for the first time that when he gets his transplant that I will be in the waiting room all alone. My family will be there with me but I will feel all alone because the 2 people that I love the most will be in the OR. Kyle will not be there to distract me or for me to lean on . I realized that I will have to say goodbye to my soul mate and then give up my child to the nurses and doctors in the OR. I have never handed over Buddy to the OR people, Kyle has always done that for me because I just can't do it. I dont want him thinking that I am giving him away. I am so scared but so anxious at the same time...I guess that is normal..

I am so frustrated......Buddy throws up 10-15 times a day. I realize that this seems to be a normal thing for babies on dialysis but still, it bothers me. It wouldnt bother me so much if he would just throw up and be done with it....NO, he gaggs then dry heaves then throws up then cries because it hurts.....It is a 2 minute ordeal. If he throws up 15 times a day....that's 30 minutes a day that he is throwing up......how awful is that?????


Yesterday, we went to see Dr. Malagon.....She is SOOO happy with his progress. He weighed 6.53kg ( 14.5 lb) was 61.7cm long and his head was 41 cm around.

Labs were okay....some were up but we are changing formula to fix that....

Am I paranoid or is it just TEETHING?

Well, I can tell you one thing......I AM PARANOID!

Brayden has been getting more and more fussy over the last week. On Friday, he had been so fussy the night before that I decided to take him to work with me to have somebody look at his ears. They were fine. He had been pulling at them the night before.....I just dont like it when he hurts....The fussy is not real bad hurt but it is a long hurt. He had a horrible day with Kyle on Saturday, fussed no stop all day and didnt sleep but a hour or so. He did, however, decide that he would eat all of his bottles by mouth. Kyle didnt have to use the G tube at all that day. Sunday morning when I went to work, Kyle called and said that he was fussy again.....so Kyle brought him in again.....again, NO ear infection. Everybody said maybe he is teething....I thought no way.....He is 5 months old but he really is only 3 months. Its not time for teeth yet! So, Sunday night, we tried oragel and by golly it WORKED! Amazing huh?

I feel like I am over paranoid but then again I dont feel that I can be paranoid enough... We have had so many complications that I am afraid we will end up with another one. I now know that when it comes to my son, sometimes my medical knowledge is NOT such a good thing....

Anyway, So Brayden had a great day Monday with Gran. She said he was a different baby than the week before. He started smilling again and laughed at me this morning. I almost cried when I heard that sweet laugh.

He is eating like a champ too! Saturday he ate 2 oz every 2 hr, Sunday it was 4oz ever 2 hour and yesterday he did about 3 every 2 hours. He is doing SO SO SO SO good! I just LOVE when he is eating and cooing at the same time.....I can tell he is enjoying it!

Lets just hope it lasts...........

Today is a good day!

Today is a good day for several reasons.....
1) Our appt with Dr. Malagon was great!. Brayden weighed 6kg ( 13 lb). He was 23 inches long and his head circ was 41 cm. That's 2lbs, 1 in and 1 in more than 2 weeks ago! Dr. M was thrilled. His labs were pretty good.
Na 139
K 5.0
Cl 101
BUN 63 ( little up)
Cr 2.0( little up)
Glu 119
Ca 10
PO4 4.3
Albumin 3.0 (great!)
Alk Phos 574
PTH 673.6 ( down from 1000 so the Sensipar is working)
Hgb 11.9
Hct 35 ( great!)
WBC 6

We are increasing his Calcitrol to .08ml/daily and decreasing the Tums to 3 times a day

2) Brayden got to see his great grandparents today....He puked on Grandmama but she loved it.

3) Finn, our new found dialysis buddy got a kidney today and is doing well. Another PD pt at UT got a kidney today too.


Its amazing how excited you get when somebody else's kid gets a new kidney.

I LOVE weekends!

I love the weekends! I work every other weekend so the ones that I am off are the best thing ever! We went to the lake with my family. It was the first time in a long time that we ALL were somewhere hanging out. Brayden did so good, he fussed some because it was hot but when we got him cooled down he was his happy self...It did storm big time, but we just huddled together under the canopy and hoped it would stop! Kyle, tried to sink the boat.....well, it wasnt all his fault, the water was super choppy and the front of the pontoons were riding low...Only about 300 gallons came over the front and soaked everything. Kyle threw it in reverse and all was well, except all the towels were wet. All in All a GREAT DAY!

I just cant wait till the day that Buddy can go swimming in the lake too! He loved the bath when he was off of dialysis for that 23 days!

We are going to his Ped today to get some allergy medicine. He threw up mucous again today, its not just a cold. I have put it off for ever so that if we could avoid another medicine, we could

Labs today

Today we did labs....we cheated and just did a heel stick....I am so tired of him getting poked a million times just for blood.....I cant wait until we get the medi-port

Na 137
K 5.2
Cl 101
CO2 27
Glu 92
BUN 59
Cr 1.82
PO4 4.2
Alb 2.9


No changes to anything. That we know of...they atleast didnt call today....

Buddy has been doing really well at PT, made it a whole hour! Such a big boy!

Until TODAY

Well, Brayden will be 5 months old on Friday and boy has it been a roller coaster. Since I have just started this thing, I will fill you in on our life up until today.

Kyle and I met in Feb of 2008. We started dating a couple of months after that and got very serious very quickly. We decided to have a baby in May of 2008. I went off of birthcontrol in June and we got pregnant in July. We found out that I was pregnant on August 8th and our world started revolving around this baby. We were the happiest people ever! I had horrible morning sickness but wouldnt trade it now for anything. At the time, I was working nights in the ER ( I am a RN) and Kyle was still at the Fire Dept. (he is a paramedic and now works full time at the Ambulance Service). Life was great, we were going to have the most wonderful healthy baby that there ever was.....Until our first official ultrasound at 19 weeks.

At 19 weeks, we went in to have our first official ultrasound. We had been doing unofficial ones in the ER and had watched our lil man grow. We were okay with either sex but were so excited that the first thing we saw was his "fireman"! All of the joy lasted about 15 min while we watched the rest of the ultrasound. Our OB came in and said that the babies bladder and ureters were big and we would need to see a high risk OB to help determine what it was. This was the most devistating thing that I have ever gone thru. To know that something may be wrong with your baby is awful.

We saw the high risk people the next Friday and they said that it was either Posterior Urethral Valves (PUV) or Prune belly syndrome ( PBS). He said that we would need to decide if we wanted to continue the pregnancy becuase both of these problems were life threatening to the baby and that about half the time they dont make it long after being born. We promptly said kiss it and we want our baby no matter what. .....What kind of question is that anyway?

We continued to see them and have many many ultrasounds. They said that things were going great and that we could deliver at our hosptial and if anything was to happen that we could transfer Brayden to an NICU in a bigger hospital. That sounded great to me until I went to see the Urologist that would be seeing him after he was born. He told me that even if he came on time that he would need a NICU and would probably need to be put on dialysis....That was at 32 weeks. I called my regular OB and told her that and since my fluid level had been dropping we decided to give the high risk people in Knoxville a call. My fluid dropped even more on thursday and I started steriods to prepare his lungs, saw Dr. Stevens on Friday. He told me to come back Monday with intentions to stay in the hosptial. We might have a baby. When we got there Monday, he put us in and said he would try to get us to 34 weeks. On tuesday, I was exactly 33 weeks and went for another ultrasound and monitoring of Brayden. He wasnt doin so hot and my fluid was almost compeltely gone so Dr. Roussis came in and said that we would have a baby by c- section that day. It was 10 am and we had a baby at 12:30.

When he came out he was HUGE for a 33 weeker. He was 5lb 5oz and 17 in long. He cried and was breathing great and peed on the doctor in the OR! I was the happiest mom ever. I got to see him for about 5 min before he was wisked to the NICU. Kyle stayed with him as much as possible until I was able to go to him at 8pm that night. He was so tiny yet looked so big next to some of his neighbors.

Our NICU stay--the short version is.........stayed 45 days, had 4 surgeries, day 6 for PUV, day 13 for cath placement, day 29 for G tube, hernia repair and orchiopexy, day 33 for cath replacement b/c of omentum. Transfered to UT (where his nephrologist is) and started dialysis training on day 40 and came home on April 10th, 2009. He weighed just over 6 lb at that time.

Since then......we have had 2 round of peritonits, surgery to take out infected cath, off dialysis for 23 days, surgery to put it back in, and a vomiting admission. Before now, then longest he had been out of the hospital for was 13 days. Now he has been out for almost 2 months (knock on wood)

He is on dialysis 8 hours a night, 6 nights a week. We see his Nephrologist every 2 weeks and get blood drawn every Wednesday. He see physical therapy for an hour every Tuesday and occupational therapy every Thursday. He is a very happy baby and is coming along very well.

He doesnt eat well....he did for a while but stopped completely a few weeks ago....he is slowly comeing back to eating. He offer 2 oz every 2 hours during the day...he eats maybe 1-1.5 oz and the rest goes down his G tube. He is on the continuous feed at night getting almost 2 oz every hour...I was totally against the G tube and cont feed but now realize that the best thing for him is to grow....and boy is he growing.

Today he weighed 6.03 kg which is 13 lb after dialysis so his dry weight is about 12.5lb! He was 23 in long last time we were at Dr. Malagon's.................He is my big fat boy!!!