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,