Not Outta the Woods Yet

    So, Today was a long day, to say the very least.    LJ went to see his Nephrologist, and there was a lot to talk about.   I always have such a pit in my stomach whenever I have to take him to the hospital.  Its bothers me to be there for a couple reasons.  Since he was born there, and I don't feel like he got the best treatment, it's weird for me.  Then, I lost his father at the very same hospital, so, need I say more on that subject?  At the same time though, I don't like the other hospitals in our area either, so it's kind of a catch 22.  I used to love the hospital that I was recently admitted to.  That was, until I was recently admitted there, and they treated me like crap, but that's a whole other story.  Back to my baby though.
     While we were at the doctor, LJ had some blood work done, as usual.  His creatnine was down more to his level that I am use to seeing it at, which was good.  They had me give them a stool sample and they ran like a million tests on it.  They even want me to collect more.  What they did say was that from the amount that they have, there was some evidence of infection, but they can't specify what kind.  That is good, and bad.   It's not good that my Honey Bun has an infection, but hopefully now we can finally get this thing taken care of.
     On another note though, now his blood pressure is high.  I have to admit, I haven't taken his blood pressure at home in about a week and it's been fine.  Today though, it was up way above normal.  Now, I am home rechecking to be sure it's not too high so he doesn't have to be admitted over the weekend.  Lord knows I don't want that.  I wasn't even expecting this one.  The Prograf would be to thank for that, and his doctor checked a level to see if that was too high, but we won't know about that until tomorrow.  I'm thinking that just might be it because we recently bumped it up so much because the level was coming back so low for a while during recent blood tests.  I'm almost certain that's what it is, but I'm no doctor.  So we will just have to see what they say on that one.

Just one deep breath, and one day at a time!  Have a Blessed one Everybody.

Throwback Thursday

     I was just looking at these videos of my baby when he was so chunky!  I miss him being this fat.  The first video is from back when we where out with his Dad at a restaurant.  LJ was just so tickled at Josh being silly.  I loved how they were together.  God I wish I could have those days back.   The second video is when he was eating a cheese doodle and got mad because the cheese was stuck on his finger.

   Well, he is feeling a lot better than he was a couple days ago with his cold, but not 100% yet.  Gotta take him to the doctor tomorrow.  We gonna get to the bottom of this real soon with that other issue.
They gonna run a bunch of tests that everyone neglected to run all this time.  I spoke to his LJ's Nephrologist personally this afternoon, and was made sure of that, so we'll see.  There had been some miscommunication because she didn't know that I was trying to reach her when I was, and I was talking to her nurse, but like I said, we'll see.

My poor Angel

     Hopefully everyone is having a good week so far.  Better than mine, I imagine.  As if he is not already dealing with enough with his upset stomach, going on 2 whole months now,  my angel has another cold.  It just hit him like a ton of bricks out of nowhere yesterday afternoon.  I swear my baby can't catch a break for nothing.
      I just really wish the doctors could at least get this diarrhea issue under control.  All they kept telling me was that it didn't see, to be causing him any issues, but that sounds crazy to me.  How could he have diarrhea this long, and it not cause him issues?  I asked if they thought he should be admitted into the hospital for observation, they said it wasn't an emergency situation.  They ran a test for C-Diff, which was negative.  That's good and all, but that still does not stop the fact that I can't sleep at night without waking up to exploding diapers, and messed up sheets.   Now, with the cold on top of it, he's been spitting up too, he's gotta be getting a little low on fluids.  I've been having him drink more water through the night though, so hopefully that helps.  He has to go and see his Nephrologist on Friday, but I am kinda dreading that one.  Now after all this time, and he is sick with a cold, it looks like it was me who has been neglecting the situation.  I have proof of all of my conversations with all of the doctors, and I also took LJ to see his Pediatrician, who said that his diarrhea wasn't that serious either.  They were also drawing blood, and reviewing his labs frequently this whole time, I was told that all that was fine.  I know from experience that everything can change almost instantaneously, so am praying that not much has in that department, but I am still searching for some resolution.  I absolutely hate it when my baby is not feeling good.  I hate seeing him sad, I can't stand it.  Something has got to give.  I am getting fed up right about now, and all of these doctors are getting ready to see the side of me that they are very familiar with, and do not like.  I swear, the only time people actually listen is when you act ignorant.  I'm trying to maintain my composure, but it is really killing me.  We'll see how long I can hold it, but they are truly pushing me.  If I don't see some improvement in my angel, like real soon, we gonna have a problem Houston.

Uneasy

So, I finally found out about LJ's labs.  I had to email the doctors in Boston myself because no one called, or emailed me like they usually do.  To me, this could mean one of two things, either his labs were fine, and they just didn't bother.  in which case.  I still would have appreciated a call to say so.  Or, they were not good, and they were trying to come up with a plan, in which case, I really would have appreciated a call to let me know they were trying to figure something out.  Either way, when I got them I was told that his labs were a little different from his normal, but they did not want me to worry because they were not that far off from his baseline.  The doctors were most concerned with his creatnine because that is the level that would fluctuate based on the Dtap vaccine if there was any negative reaction.  That is the level that was slightly up, and that is why I was freaking out.  That is actually why I am still a little uncomfortable, but they said that I should relax.  Their solution was to just have all his labs rechecked in 2 weeks to see where things are.  Now, I know that they deal with this kind of thing all the time, but to me, 2 weeks is like a lifetime away.  Of course, I am going to try to stay positive, but with our track record, it is so hard to.  I just want my baby to be ok.  I hate to experience any little bump in the road because I know how easy it is for the littlest thing to turn into the biggest.  This boy is my wold.  I would hate for a stupid mistake on my part, to have any adverse affect on his health.  You know what though, we are just going to get through these couple of weeks, and have these labs checked out, and see what exactly is causing this little bump up in his numbers.  I'm not even gonna sweat it.  We got this.  We can get through this.  We always get through everything tough we have to deal with.  We have gotten through some tough times together...the toughest in fact.  He has been such a little man, my little trooper.  I will never stop fighting for him, and he keeps on fighting, so we are good!  Y'all have a blessed Evening, and a Great Weekend :)

Done with the MRI

Happy Saturday Everybody!  Tonight is the night we set those clocks ahead for daylight savings time.  I am not looking forward to it.  I already feel like I don't get enough sleep,  I swear.

Well, LJ finally had his MRI yesterday, but that was not before he had to have a physical, which should have just been a normal procedural thing.  Knowing us, though, it was anything but.  The doctor convinced me that he was due for his DTap vaccine, which he had 4 times before.  I debated with him that this was before transplant, and LJ was not to have any vaccinations because of his compromised immune system, but he insisted that it was not a live vaccine, and other children with transplants get it, and so LJ was given the vaccine.  At the same time, I was already in contact with the transplant center in Boston.  By the time I reached the transplant coordinator, he had already received the dose, but she advised me that he should NOT have gotten the DTap vaccine. It was too late, he had just got the shot.  I immediately felt hot all over, I began to get short of breath.  All I could think was that I had had just destroyed my son's life.  I am still in a panic over it.  Courtney, the transplant coordinator in Boston, advised me that while the do not advise that this vaccine be given to their transplant patients, other centers do allow it, and it should hopefully be ok.  However, the pediatrician's office should have contacted them before giving any vaccines.  She spoke with the doctor personally, and had him update their records to indicate that so that going forward there would be no more confusion.  Meanwhile, LJ has to go back for follow up lab work next week to check his creatnine.  I just pray that all is well.  Lord, if it is not one thing, it is always another.  By the way, his Prograf level last week was actually back to normal. :)

His MRI went well, which was good.  LJ had to be sedated since he obviously wouldn't be still for the entire process.  He was under for about 2 hours.  They were really nice to my baby and made him feel pretty comfortable before taking him back.  He actually seemed excited to when they were bringing him down there in the hospital bed, it was so cute.  They let him decorate his mask that would be used to put him to sleep, and he got to pop bubbles until he fell asleep.  They even let me go all the way back there with him until he closed his eyes, which was nice.  I get separation anxiety, and I need to kiss my baby a lot before he has medical procedures.  As soon as he came out I came running back to the room to get my baby, and we were off, right back home, so that was good.  He was a trooper, as usual.  My big boy.  Now we just have to wait 3-5 business days for the results to see if there was anything that could have caused his scoliosis, or anything that they maybe can do to slow it down.  So we will see.  One thing I have learned from all of our experiences is to always keep a positive outlook, and keep pushing forward.  No matter what, the fight continues.  I do it for him!!!

LJ's Mickey Mouse clubhouse mask

playing with his tablet before going back 

just chillin'