Flashback Friday

I forgot to add this video yesterday.  I was a little lost in my feelings, missing my Bae, and dealing with all the hospital stress.  Here is a cute video of LJ when he was just a little Peanut.  We were all together as a family, and everything seemed so much easier back then.  Lord knows I miss my love, and so does my baby.  I LOVE U BAE!!!!

That's ME!

Admitted

Here we are....in the hospital, just as I predicted.  I could tell by the way things were looking over the weekend that when I brought LJ into clinic yesterday, he would need to stay.  My baby just was not himself, and with the drop in wet diapers, that was a red flag right there.  Of course, just like they always do, they tried to send us home from clinic, saying that he dint even have a fever.  LJ was literally shaking because he had the chills, and I kept telling them, either his fever is just about to spike, or your thermometer is broken.  No longer than it took us to get from clinic to emergency, his temp went from normal to 104.  This was about 8 minutes at the most, and I think that's being generous.  Now, if I would've went home, I would've had to come right back.  I can't stand this hospital.  His fever has gotten as high as 106 since we been here and they still don't know what the exact cause is.  They have taken urine samples (it was terrible having to put my baby through getting a straight cath), stool samples, blood cultures, and no information yet.  All we know for sure is that he was dehydrated, which he is getting IV fluids for, so his kidneys took a hit, luckily not too severe, but pretty bad.  One doctor had the nerve to say, "Well, he is sick."  Well DUH!!! That's why we're here genius.  I swear, these people kill me.  So now LJ is NPO (nothing by mouth) and getting only IV fluids.   He is getting a few broad spectrum antibiotics since they don't know exactly what is going on yet, and we are waiting to see if anything shows up in these cultures.  Meanwhile, I just want my baby back......and we still are dealing with the Cdiff in the background of all this.  I find myself feeling like i just want to break down, but it's not me who has to go through it, I just deal with it.  My little boy is the one who is actually living it, I 'm just bearing witness, and that' what is so painful, that's all I can do.  I'm just here, but I am his biggest advocate, and I have to fight for him, this I do know, and that is all that keeps me going.

Even Worse

     Just when I thought that I had my hands full dealing with this Cdiff, LJ got sick out of nowhere the other day.  My poor baby got a fever out of the clear blue sky, and now, on top of everything else, we have to try to find out what is going on here.  He dealt with it pretty good all weekend long, but earlier, I noticed he stopped having as many wet diapers as he usually does.  That is where the red flag goes up.  Anybody who has a child with kidney issues knows, when there is a change in wet diapers, it's time to get to the doctor, so tomorrow, we will be right at the hospital.  It's hard to tell though, because he has the diarrhea, but I put a urine bag on him about 30 minutes ago just to get some kind of an idea for when I bring him in tomorrow.
     It hurts my heart so bad when my baby is sick.  I mean, he deals with so much, and he is such a trooper.  He rarely ever complains about anything.  I am truly blessed when it comes to that.  He deals with frequent blood draws, and all the poking and prodding that goes on at the hospital.  LJ has to go through so much more than other children his age, and he does it all with a smile on his face.  When he gets sick with things that are normally not a big deal for other children, they are always a big deal for him.  I hate seeing my Angel in pain, or unable to do the few things that he normally does.  Its bad enough that he can't run around and play, enjoy most things that he wants to, but to see him totally unable to interact just tares me apart.  I would give anything to take away all of his pain, to make all of his ailments my own.  I feel so hopeless, so helpless when my baby looks at me and asks me what's wrong with him.  I tell him everybody gets sick sometimes, but he says he's always sick.  It hurts me so bad.  He's so smart... too smart.  I just want to make him better.  It seems like it's always something though, and I don't know why, so I don't even really know what to tell him.  What do I say to him?  I ask the same questions that he does.  I try to stay positive.  I pray constantly.  I don't know what to do anymore.  I'm not going to stop praying, but I would be lying if I said that I don't get scared.  All I can do is keep going.

Where Do We Go From Here

It's been 3 weeks now since school started, and my poor Angel hasn't even had a chance to start school yet.  I feel so bad for him.  I know that he's only in Kindergarten and not missing that much yet, but it's the whole experience that he's missing out on.  The biggest thing is missing out on his therapies.  Most importantly, his physical therapy.  Our social worker at the hospital sent a request to his school for tutoring and services while he's out, but I haven't heard anything about that yet.    We've been to see Gastroenterology and Infectious Disease to try to get some stuff figured out as far as this whole Cdiff infection and getting rid of it once and for all.

     At our visit with GI  we decided to make a change to LJ's formula.  I felt that since he has been using the same formula since after transplant, it was worth trying something new.  I had been reading more about Cdiff and the fact that it needs to be fought off by "good" bacteria in the gut.  If  LJ is not getting enough "good" bacteria from the food he is eating, then it would be hard to combat the bad bacteria.  So, now we are in the process of switching him to Pepatamin Jr. with Prebio which has some of the "good" bacteria that he needs to help fight off the infection.  He has been tolerating it well, which is good, and we are slowly increasing to switch him completely to this formula.  LJ is also back on the Vancomycin, which he is getting 4 times a day, but unfortunately, it seemed to have slowed the diarrhea down the first few days he was on it, and now, he is back to going just as much as before....Ugh!  When we went to see ID, I spoke the the doctor about the different treatment options that are available.  She told me in adults, they do something called fecal transplant surgery, which is just as crazy as it sounds, but it has an extremely high rate of success.  It''s out something that they are trying on children, and not something thy do at all in this area anyway.  Plus, with LJ being immunosuppressed, it would not be a good idea to transplant somebody else's fecal matter into his intestine, regardless of his age, so that is out.  The other options, are to try another taper for the vancomycin, which we are doing, and we are going to add a probiotic to his regimen at the same time, to combat the bad bacteria.  If no improvement is seen in a couple weeks, then there is another medication called rifaximin, that is supposed to help with this overgrowth of bacteria, and we will be giving that a try as well.  For right now, that is the game plan.  Once we get to that step, they are going to run some more tests to see if there is anything else going on besides the Cdiff that could be making this harder to fight off once he has been treated long enough to where it should be going away.  Lord, I hope and pray that it goes away this time.  Not only do I want LJ to get to school, but I hate seeing my baby suffer like this.  He goes through enough outside of all of this.  It just seems so unfair.  My baby can't seem to catch a break.  Every time I turn around it's something else, or the same thing over and over, but always something.  I just want my boy to have a chance to be a child and have some time where his life seems somewhat "normal", whatever that is.

Heaven is Real!

I didn't know whether I should or not but I have to share this story with you guys.   So, last night like many night I had a hard time sleeping and I was up crying thinking about Josh.  No a couple of weeks ago around the anniversary of his passing I had asked for a sign just to know that he was watching over us.  So last night and I was dealing with one of my regular struggles when I got in the bed to lay next to my baby and I couldn't sleep as I lay there I started to doze off but I was struggling and all of a sudden I saw Josh and he talked to me he told me that he was watching over us and that he always watches over us and he sees me when I'm crying and that he wishes that he could hold me but for some reason when I'm crying it's hard for him to get to me and he said that I have to allow him to come to me so he said that I allowed him last night to get through to me and he asked he told me that he wanted to cuddle with me and I tried to ask him questions I told him there was so much I wanted to talk to him about it he said he didn't want to talk he just wanted to lay with me because he missed it so much and he just wanted to lay there, so I just turned around so we could cuddle.  I tried to reach behind me to feel him,touch my Bae.  I felt nothing but, as I lay there I could feel his body behind me and he whispered in my ear and he said Bae, I'm right here with you and he looked over at Jay and he said look at my boy.  The tears roll down my face and he told me he loves me and that he was always with me and he just miss being with me but he said that it was hard for him to come to me when I was crying.  I couldn't understand it, I still don't understand it but that's what he told me so I didn't tell anybody else this.  I just figured that I will post it here because I had to just get it off my chest but I haven't slept so good probably in almost all the years that he's been gone and it was comforting, but I probably cried as much today as I ever have I just know that is so hard, everyday is just hard and it doesn't get any easier.  I LOVE U BAE!!

Pesky Bug

I've been doing a lot of reading over the last couple of days even weeks trying to see if I can find out any information on why my baby keeps getting infected with this nasty little bug.  I was able to find out that the spores from it can live for weeks and actually even months on hard surfaces if you don't wash your hands really good which is a terrible thing to think about.  The article that I read talked a lot about the good bacteria versus this bacteria which is the bad bacteria and how we can get overpopulated with bad bacteria if there's not enough good bacteria to keep it in check which I think is the issue in my son's case because he doesn't eat a lot of table food which is what creates good bacteria and is able to fight off some of that bad bacteria.  I just know that I need to speak with his doctors and we have to come up with a plan together to try to figure out a way to fight this in a productive way so that we can keep him healthy because the thing is that I really want him to start school and I want him to be able to stay in school and most importantly I want him to stay free from this sickness because not only is it irritating but I know it has to be painful for my baby.  I'm sure that the way it originate it was probably threw his use of antibiotics because it started with a broad-spectrum antibiotic which was Amoxicillin and that's where this whole nightmare began back in January but now the main thing is to figure out how to stop it so if you guys want to check out the article that I was reading for yourself I have the link right here, but for me I'm going to try to find out what we have to do working with his doctors to try to figure out a way to keep this nasty bug and check before it gets any worse.

Ready or Not!

So LJ was supposed to start school on Wednesday but I guess you will be doing that we were all set with getting supplies and new clothes and about a week or so ago I got a call from his daycare saying that he had an upset stomach they told me LJ had been having loose stools that day at daycare so I called the doctor and they told me they wanted to have a stool sample they figured since he had recently stopped his vancomycin for his C diff infection, it might have just been a side effect.  Little did we all know, somehow he had got the infection again so now because of the fact that seed if it's contagious LJ can't start school on Wednesday like we had originally planned and now I have to wait for the doctor to let me know what the next steps are as far as him starting school.  I feel so bad for my little man because I thought that we were on a good track.  I thought that things were getting better since he had been on the antibiotics, but I guess once he stopped everything seem to go the wrong way again.  I don't when this is ever going to end.  I just know that I don't want him to fall behind when the school year is just starting it's like we take two steps forward to take 10 steps back.  It's one headache after another I swear.  I just know I want to hurry up and find out what we're going to do,  what the plan is and when I can hurry up and get my baby started in school because I want him to get used to the routine and get used to making new friends.. just the whole process.  I just want to get the ball rolling.  I think I'm more anxious than he is as far as get him back on track with his therapies; Physical Therapy, occupational therapy, speech,  everything just to get him back where he needs to be I'm anxious to get him back into Physical Therapy working on walking and I want him to be at his full potential.  I want him to be working on everything that he could be working on as far as physically and academically.  I want LJ to be challenged every way possible.  I just don't want my baby to fall through the cracks, that's the most important thing to me.  He's ready I mean he we've been to open house I've taken a tour of the school he seen his classroom, I've met his teacher, we're ready to go so all we have to do is get my baby healthy and we are all set we are ready to do this. We're ready to take on the school year.   LJ is excited and I don't want him to lose his enthusiasm.  He is ready to do this. We gotta get my baby in tip top shape.