Catching Up

     It's been a long time since I posted anything, and we have been BUSY!!!  LJ finally got out of the hospital, the day after my last post, which was a blessing.   And.....He started school!!!  That was such a big step for my baby.  I am so proud of him.  My baby is getting so big.  Now, even though he's started school, he still has some of the same issues lingering in the background, which is the frustrating part.  We are still dealing with the forever ongoing tummy troubles; that is mostly it actually, but that is enough on it's own.  His labs are starting to become effected from it now, so my baby has to have a scope done, which means he has to be admitted into the hospital overnight and sedated; the whole nine yards.   I am really dreading it.   This has been going on so long though, and the doctors have absolutely no answers, so they want to take a look inside to find out what's going on.  I just hope they are able to finally tell me something after this is done.  I don't want LJ to have to go through this to still have unanswered questions.  So, we have that coming up when we go to Boston.

     On a happier note, LJ is doing really good in school.  He has such a good time in class, and is adjusting a lot better than I had originally thought that he would.  He participates a lot in class, and the other students like him a lot.  He even has a little girl that he says is pretty in his class, even though I told him he better slow down.  I so happy for him though.  The only thing is that when he sees me, he always has like a little melt down, and I have to give him his milk while he's there right now because I don't let the nurse do it, but that's another little story, lol.  I'll let y'all know about that one tomorrow.

My Big Boy with his teacher

Havin' fun at school 

   

Home on the Horizon

     Today wasn't such a terrible day as far as news goes.  We are still in the hospital, but the good thing is, LJ's labs were looking much closer to normal.  His creatnine finally started to come back down to his normal range, it was 0.66 (normal for him is closer to 0.50) after lingering at around 0.8 for a few days.  I think that the Prednisone helped bring it down because it helped with the inflammation, and the tacro level coming down helped too, just like Courtney (transplant coordinator from Boston) said.  His levels were stable today as well, so no adjustments were made to his medication doses.  According to the doctors, is his labs are still stable tomorrow, we may be able to go home, and continue to deal with the diarrhea outpatient.  I had to let the doctors know today that I did not appreciate the fact that Boston Children's was not notified of LJ being admitted until 6 days after we were here, especially when I asked the doctors here to call them.  The protocol for his medication that was followed just recently, should have begun 5 days ago when they identified the infection, but since Boston did not know about it, this was not done until recently.  I was, and still am highly upset at the fact that I had to contact Boston for answers to questions that Rochester should have known, and for feeling like I was kept in the dark about the seriousness of my child's infection.  Of course I got a bunch of meaningless and insincere apologies, but I had to let them know how I felt.  I am soo ready to get out of here, and so is my baby.  I just want to get home, and get back to my own bed, get him back to sleeping normally, getting ready for school.  I think he will be going very soon as long as we can keep this diarrhea under control since he doesn't have Cdiff.  As long as he's not having bad episodes, to wear he is going to end up having accidents at school, they will clear him to go.  I don't want him to get embarrassed at school either though, and he has to be feeling better.  Other than that, I don't want to keep holding him back, he needs his therapies, and to socialize and learn.

Lord, I pray that my son's labs look even better tomorrow than they did today.  I pray that we leave this place and only have to return for scheduled visits for years to come.  I think my baby is in terrible hands when he is here, and I really wish there was another hospital in the area that could provide him with the care he needs.  I have n idea why they give this hospital as much credit as they do, maybe it's just the poor staff.  Whatever it it, they need to take better care of their  patients, inpatient, and outpatient alike.  Hopefully, very soon we will see them from the outpatient side though,

Unanswered Questions

Being in this hospital is really stressing me out on a whole 'nother level.  Now it's not like this is the first time LJ has ever been in the hospital, so that's not even it.  This time, I feel like he's in here, and for all of this time, nobody knows much of anything, at least that's what they are telling me.  It's like, his diarrhea is still up in the air after numerous tests, and more tests are literally being ran as we speak.  Then there is the issue of why he was admitted in the first place.  The urinary tract infection that J has, is actually Pylonephrytis, which is a kidney infection.  This was just told to me today..8 days after he was admitted.  I am furious at the fact that I wasn't told about this before.  it basically is a bad UTI, and the symptoms of it are fever/chills, pain with urination, possible blood in the urine, all things that LJ was having, but the point is that nobody told me this.   All the attending doctor did was apologize for that, but it was a dry apology.  If you ask me, she didn't even mean it.  Another thing is that they couldn't even offer an explanation for why my baby's levels have skyrocketed the way they did, but today, they seemed to have dropped down a lot, which is good.  Another thing is...on top of everything else, Boston didn't even know that he was in the hospital, and when I found that out, from putting 2 and 2 together last night, it drove me up a wall.  So, I email our transplant coordinator there, and she said that they only found out because they called last night looking for LJ's labs.  I had been told days ago that the doctors here would follow up with Boston.  Last night though, they came in and told me they were starting him on a low dose of Prednisone for his infection that is to accompany the antibiotic per Boston's protocol, I knew they had lied to me, so I had to talk to Courtney (the transplant coordinator).  Since talking to her, I've calmed down, and she had answers for all of my questions, being that I got 0 from here.  Her thoughts were that his levels may have jumped up as a result of the diarrhea worsening due to the broad spectrum antibiotics he was placed on from coming in just recently.  She also said that the Prednisone helps with inflammation of the kidney and can help with the creatnine, and so can the stabilization of his levels, the tacro (Prograf) in particular.   Now, the diarrhea is something that is STILL being worked on, but if my baby can get back to where his kidneys are in good shape, I will feel a lot better.  I am still very disappointed and disgusted with this hospital and it's staff, but LJ is who's most important, forever and always.  So, fingers crossed until tomorrow I guess.

Stuck Here

We have officially been in this hospital for a week now, and we have no idea when we are going home.  When we first came in LJ was so sick he didn't want to do anything but sleep.  Now, thank goodness, he is feeling better, but things are still wrong in so many other ways.
 
     After running a bunch of tests, from blood tests, to getting urine samples, and more stool samples,  they finally came to the conclusion that LJ must have gotten a urinary tract infection.  By this time, we had already been in here for a couple days.  They already had been giving him all the antibiotics just in case, since he was having fevers and throwing up so he was covered, which was good, they just needed to find out exactly what kind of infection he had, if it was a true infection, so they could reduce the antibiotics down to the exact one needed to treat the particular bug that was attacking his system.   Now, at first, the consesus was that it wasn't likely for it to be a urinary tract infection because they are rare in boys.  The reason that I knew it had to be something like that was because of the way that he was acting when he went to the bathroom and when I changed his pamper.  He would cry and whine, I felt so bad for him.  My baby kept asking me to put Vaseline down there, but he wasn't sore or red, so I knew something was not right, and I was right, that's exactly what it was.  Come to find out, because of the diarrhea being so loose and frequent, that was an easy way for him to gt the bacteria in his urine stream.  So, back to the long term issue with this diarrhea.  The real crazy thing is though is that when they re- tested him for Cdiff, it came back negative this time.  Imagine my surprise.  So now here is another dilemma.  All the doctors are confused because they have no idea what is going on with the diarrhea as to why he still has it.  They have been running several tests on his stool since he came in, and NOTHING has come back showing any kind of infection to this day.  LJ was on precautions, meaning the doctors and nurses had to gown up before entering, and we couldn't go anywhere but his room.  Yesterday, they removed the precautions because I was flipping out.  I said "How can he still be quarantined when his tests are negative for Cdiff?"  The doctors and nurses were like deer in headlights, but eventually, later that day, the precautions were removed.  So today, for the first time since we've been here, LJ was able to go to the playroom.
     The big thing now, which they are baffled about, is his immunosuppressants.  For some reason, ever since we've been here, his levels have been all out of wack.  Right now they are to the point where they are actually being held off and on because the levels are extremely high.  They are so much higher than they have ever been and this is starting to make me nervous because when i ask them why is this happening, all they can say is they don't know.  At first they tried to blame it on the diarrhea, but I was like, um, no because he has had that since January and has been totally fine as far as blood work. so try again.  This afternoon they told me that they are going to be starting my baby on a low dose of Prednisone, which is a steroid, that he needs to be on while he's on the antibiotic for the UTI.  I'm going to be calling Boston in the morning though, because, this is something that should have been started days ago when he first started the antibiotic; which makes me believe that until they got nervous about his levels constantly rising, they did not keep Boston in the loop about LJ even being in the hospital, and that is a problem for me, so I have to find out for myself.  Sooooo, Until they get my baby's levels back under control, here we are...in this awful place.

Playin' peek a boo, I luv that smile 

Love of my life