Labs and X- rays

I hope everyone is having a blessed week so far.  Things our way are hectic as usual, back to business.  Monday we had to go to the lab to get some more blood work done to check on LJ's tacro and sirolimus levels.  His tacro was still low, thankfully not as low as it has been before, which was undetectable.  We are getting there, slowly, but surely.  The doctors in Boston called yesterday to say that they wanted to increase his Prograf (tacro) dosage, and repeat labs at the end of the week.  I swear we live in the lab.  Hopefully this time we will be on target.  I hate seeing my little soldier get stuck so much, but I tell you, he is definitely a soldier.  He doesn't even cry anymore when he gets his blood drawn, and they take it from the back of his hand.  I even cringe when they do it.   He prefers it there though, which is crazy to me, but whatever is easiest for him is what it is.  We'll see how that goes on Friday.

We had to go get his back check out because when he had an x- ray at the pediatrician and found out he had RSV, they also noticed that his scoliosis was getting worse.  When we  got to the Orthopaedic physicians office, they took another x-ray.  Of course, it confirmed that his curve was in fact getting worse, which is just another scary thing for my baby.    It's so crazy to me to think that his back used to be completely normal before he had his transplant, then after we come home, suddenly after all that growth, he has a curve.  It's like a blessing in exchange for a curse.  You take the good with the bad I guess.  It's really all we can do.  So now we are exploring options.  We discussed some of the possibilities before, but we were kind of hoping that the curve wouldn't get so bad, so fast.  Now, we are at the point were we are going to try bracing.  He will need to wear it most of the time, but it can be taken off so he can get in the bathtub.   Casting would be the next option, and that would have to be on him at all times.  Of course, surgery if it gets extreme is the last option, which I hope we never get to.  I have a brother who had a rod put in his back, and he is in constant pain because it broke.  I never want my son to go through that on top of everything else that he has to deal with.  So for now, we are going to try to see about casting.   First he has to get an MRI to make sure there is nothing going on with his spine that can be helped before we move on to other options.  It would be a miracle if there is anything that can be done to help stop the progression of his scoliosis.  If it were to stay at the point it is now, he could live with it, but the likelihood of that happening is slim to none, especially as fast as it has been curving already in less than 2 years.  The brace will hopefully keep the curving at bay, it wont improve it, but at this point, it's all I can really hope for.  The sad thing is, bad things continue to plague my baby that can't be explained.  I always ask God, Why can't he have a blessing that can't be explained?  I guess, the fact that he is here at all is blessing enough.

Us After ICU

I was so excited to get out of the hospital, I almost forgot how chaotic my life is.  No matter what though, I couldn't wait to get home to my baby.  I missed being next to him so much.  I came home to my little man still not feeling good.  When I took him to the doctor, I found out that he had RSV and an ear infection.  My poor baby.  I felt so bad that I begged for him to come see me in the hospital.  Even with his mask on, he was exposed to all kinds of stuff.  He had to be on antibiotics for 10 days for the ear infection, and as for the RSV, the doctor said it was just something that had to run its course.  My little trooper was feeling so down in the dumps.  Then, to put the icing on the cake, he started having diarrhea from the amoxicillin.  Mind you, this was almost a month ago now, and that is just starting to get better.  Since he doesn't eat table food, it's taken longer for his stomach to repopulate all the good bacteria that was wiped out from the medicine.  I have been trying to get him to eat a little yogurt, and that's been going well actually.  Hopefully my baby's stomach gets all the way back to normal soon.  Other than that though, he has been doing much better lately.  He is definitely got all of his energy back, and then some :), but I am not complaining at all.  I love when my little soldier is feeling good, it makes me feel great!

LJ's lab work has been a little funny, well, actually just his tacrolimus level (one of his immunosuppressants) has been very low.  It's just funny because it has been so stable on the same dose for a really long time, then all of a sudden the value was undetectable.  The doctors in Boston have suggested that maybe I needed to start using a new bottle, which I have done, and also increased the dose a little.  So I will be going on Monday to have his labs rechecked, and I'm praying that things are looking better.

Now, me, I have a new routine going for myself now.  My neurologist put me on a seizure medication.  I was nervous about starting one, because I was scared of what it would do to me, and how I would feel.  He put it to me best when he said, "You worry so much about what will happen if you take the meds, what you should be worried about is what will happen if you don't."  That line ran through my head about a million times when I left his office.  He said he couldn't force me of course, but he strongly recommended it, and I said I would try to start in a couple days.  After thinking about it long, and hard, I decided it was more than likely the safest option I have.  I am so scared to have another episode like I did in January.  I almost lost my life, and I thank God that my son didn't get hurt.  Lord knows things could have turned out so much worse.  So, I have been on zonisomide for the past 3 days for my seizures.  So far I haven't noticed any side effects, but it has only been a few days.  I did a lot of reading up on it, and I didn't see anything too bad compared to some of the other seizure medications,   I would be lying if I said that I am still not nervous, but I don't really think I had any other choice as long as I want to do all I can to keep my baby, and myself safe.  I'll keep y'all posted on how I do with it.

Feelin' better... I love his life

So Thankful for Family

I'm sorry everybody.  I keep having to step away to collect my thoughts.  I'm back though, ready to finish telling y'all my crazy story.   

Now, I am sitting up in the hospital, still not even fully comprehending what is going on, and the severity of everything.  I was just barely waking up from this 2 day sleep, and so very groggy still.  Even though doctors, police, therapists were constantly in and out of my room, asking what I could remember...I was still drawing a blank.  Little things were coming to me, but only bits and pieces, and that was just the things that happened once my family came to check on me, and called the ambulance.  I cannot even begin to explain how thankful I am for my family.  If they did not get worried because they hadn't talked to me all day, I don't know what would've happened to me, and it scares the mess out of me to think of the possibilities.  I know they say that everything happens for a reason, and some things are terrible, and we can never understand what the reason is.  What happened to me that Saturday night in January was one of the most horrible things to happen in my life thus far, and I have been through some rough times.  I still believe that it was a reason for it, and it might surface itself in the future.  Maybe it was a wake up call, maybe it was a message...one day I will know.   As for my family coming to check on me, that was to save my life.  That was God telling me that I still needed to be here, that he still wants me here because I got more work to do.

When I finally did start to come to my senses, all I wanted was my son.  I was so scared because I had no idea where he was, and whether he was OK.  Since I didn't really even understand fully what was going on, and what had happened to me, I was so worried.  I know there is nobody who can really take care of him for a long period of time.  His needs are so complex, there really isn't anyone who knows enough to watch him for longer than a few hours, except my one sister who is closest to me in age.  She is the only one who has ever kept him over night, so that is who took care of him.  the thing is, they were in the hospital too.  When she got to my house, and saw that LJ had not had anything to eat recently, she didn't know when the last time that he ate was, since he is g-tube fed.  Most importantly, he hadn't had his medicine either, being that I was out of it for so long.  The only thing she could do, which was the safest thing, was take him to the hospital to find out #1, if he was OK, and 2, what to do now that I would be in ICU for who knows how long.  It was a good thing too, because he was dehydrated, and she was able to learn a lot about his care.  Thank goodness she was there.  The pain of not seeing him though, was terrible.  we cuddle up next to each other every night (I know he should sleep in his bed).  It just doesn't feel right when we are not next to each other.  My older sister and brother brought him to the hospital to come see me, but he couldn't stay long because he was still trying to get over his cold, and with his immune system, it wasn't the best place to be..even with his mask on.  He needed to see me though, just like I needed to see him.  He needed to know his mommy was trying to get better.  It was helpful to both of us.  

The psychologist called my mother in Virginia, and told her she needed to get here because I was in bad shape, and she came asap.  I tell you, like every family, we have our ups and downs, but literally, they saved my life, and my sister made sure my son was well taken care of.  Just to give an idea of how sick I was, my CK level when I came in was over 800,000, normal high for that level in your blood is less than 150 for a female.  So...yeah, I was doing bad.  No wonder they didn't think I was gonna make it.  Sad to say.  As long as my numbers were coming down, and at a reasonable rate, once my levels got below 10, 000, the doctors let me go home after almost a week.   I never want to be in that hospital again, it was horrible (but that's another story).  I had to rest a lot, but also try to move around and stay active to help me numbers keep coming down, and they told me to drink tons of water.  I was getting blood work weekly, and when I went to go see my doctor she said even though they released me, I was still very sick, which was why I felt so out of it for such a long time.  I made it out though, and just had to keep those numbers coming down, that was most important.

Way to start the New Year off WRONG!

Sorry, about that....had to press pause for a sec.   Now back to my story.
So.....I was rushed to the hospital in the ambulance, and immediately got all these IVs stuck in me, all these tests ran, it was crazy.   I had a catheter put in and everything (this was a first for me 'cuz I didn't even get one when I gave birth to my son).  The police came to talk to me, and everything.  They told me my sisters wanted me to have a rape kit done, and they were so concerned that I had had someone over that may have hurt me.  There were no signs of forced entry to my house, and my son was completely OK, so everyone thought that the only obvious thing was that I had company, and they attacked me for some reason.  I even overheard nurses saying that I was beat by my boyfriend, and I should tell the truth because it's only gonna get worse for me.  I don't even have a boyfriend, but that's neither here nor there.  It goes to show how people form their own opinions.  It's understandable that my family was concerned about those things considering how I looked, and how my house was destroyed. What really happened is just as scary though.

I actually had another seizure.  The thing was, I was so tired from having missed so much sleep, and not eating right, stressing about my son and his cold, that it really did take a toll on my body.  This time though, it was horrible.  I had somehow demolished my apartment while I was out of it.  I had deep cuts all over my legs, a black eye on my left side, and so much bruising all over my body.  At first, I thought that was my worst of it all, but I was wrong.  When I finally woke up in the hospital, and could actually comprehend what was going on, a nurse told me that it was Tuesday, and I had been in the hospital since Sunday.  I just burst into tears because I had no idea where my son was, and I couldn't remember what happened, or why I was there.  I just looked down, and saw all these tubes coming out of me from  everywhere, and I was scared to death.

This is my PIC line, just one of the tubes I saw when I woke up

Once I was able to speak to a doctor, I was told that I was brought in that Sunday evening, but nobody really knew what happened to me.   They had done CAT scans and ultrasounds, but they came up with nothing, no cause for what happened to me.  What they could tell me was that I had gotten a concussion when I hit my eye, and I also had developed an extremely severe case of rhabdomyolysis from all the trauma to my body.  This was the real scary part, because they didn't think I was going to make it when they found out how bad it was.  Somehow though, through the grace of God...I am still here.  My goodness, I get chills even thinking about all the things that were going through my mind when they told me how sick I was....I can't y'all.  I'm sorry.  I gotta take another break to get it together.  Imma have to continue this in a little while.  It's harder than I thought to get it all out, but I gotta let it out.  Stick with me...

It's Been a Long Time

Well Hello Everybody :)  I have been kind of M.I.A for a little bit.  Definitely not on purpose, but I had a very hectic last few weeks.  I don't even know where to start.  I guess from the beginning would be a good place.  I hope y'all are ready though, 'cuz this one is about to be crazy.  OK, here we go.  So, a few days after my last entry, I lost one of my CDPAP workers, who is actually a close friend of mine, due to some personal issues in their life.  That was very stressful because my friend was very helpful as far as providing me with respite, which is very much needed.  It was not so terrible though, because it is only temporary.  More of a headache than anything.  That was just the beginning to my snowball of troubles.  A couple days later, my little man got a bad cold, which to me is always so scary.  I always get so nervous about him when he gets sick, especially with the transplant.  Like all mothers that hate seeing their babies sick, I go crazy, and I worry that he will end up in the hospital since he is so medically fragile.  In my quest to take care of my baby, and nurse him back to health, I neglected my own health.   Which leads me to my next dilemma......

One night, when LJ was feeling really crummy, I was up watching to make sure he didn't spike a fever during the night, just to be on the safe side.  I didn't want to give him any Tylenol because in case he did get a fever, I needed to monitor it to see how bad it got.  It's always so tricky because a fever can get him admitted to the hospital, so I wouldn't want to mask it with Tylenol.  So being the concerned mother I am, I stayed up and kept an eye on my little man.  Now, this was Saturday 1/15.  I had spoke to my sisters earlier that night, and told them how tired I was, and that I hadn't had much sleep.  They both kept telling me I needed to get some rest, or I would be no good to my baby.  Boy, oh boy!  How right they were.

The next day, late Sunday afternoon, my sister, and my brother came knocking on my door.  When I opened the door, and my sister walked in, she started yelling at me for not answering the phone.  I had no idea what she was even talking about.  They both followed me upstairs, and told me to turn around.  I just remember her screaming a lot, and asking what happened to me, but I couldn't answer because I didn't know.  I was all bloody with a black eye, my house was a mess.  My sister and brother thought I had been beaten, robbed, or raped.   The next thing I know, there was paramedics standing in front of me, asking all these questions I couldn't answer.  I only remember them saying, "She's definitely ICU material."  Then it was a whirlwind, and everything was a blur.   I need a moment tho y'all.  Stay tuned, I got a story to tell.