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...

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