One Day at a Time

So, It's Day 4 of us being here in the hospital already. and it has been the longest 4 days.  We've been moved to a different floor because LJ's labs were off so he needed more monitoring.  His electrolytes got off wack because of all of the fluids he has been getting, like his potassium, and magnesium, so he had to be hooked up to a monitor for his heart rate, and where we were, they couldn't watch it as closely as they needed to, so they moved us one floor up.  Here we actually see more familiar faces as far as the nursing staff goes because these are a lot of the same nurses that use to be here when I first had him and he was originally discharged from the hospital when he was a baby.

Its crazy though, him being in the hospital, seeing how careless they can be, but of course I have dealt with this before, with him, and myself.  It never gets old though.  It's crazy the things they do sometimes and really think its acceptable.  Today, for example, I was questioning the nurse about LJ's milk, and why it was just hanging there, because he was not getting it.  My thing is, they would just let it hang for hours, and then give it to my son after it has been just sitting out, when he is already going to have it running continuous.  I mean, it's milk at he end of the day, and it can spoil.  That's ridiculous.  I don't do that at home, but she gonna tell me that at the hospital, their practice is to leave milk hanging like that.  Of course, I was trippin', so I had to have her call somebody to find out about that for me.  Either way, I don't care what they do for somebody else's child, that's not what's about to happen for my son.  Long story short, it was determined that it is not a safe practice, health wise for the milk to just be left hanging for longer than 4 hours at a time, just like I said.  Now, that is just an example of what I have been dealing with.  The list goes on and on, we've been here for days, so you can only imagine.

Today, since it's the beginning of the week, after the holiday weekend, LJ got to see a bunch of doctors too.  we saw the usual Pediatrician, and Nephrologist, but GI, and Infectious Disease came by too to try to figure out what is going on with this tummy trouble he's been having since what seem s like forever.   Now, GI has suggested starting him on another medication for his diarrhea to see if this helps.  This one is suppose to be especially for the stomach.  When I talked to the Infectious Disease doctors though, they were not so eager to start him on it.  They don't think he needs it at all actually.  They told me that they would like to talk more with GI and do some more investigating before we give him anymore antibiotics, but they did seem to think the Imodium might be worth a try.   I ill have to see by tomorrow what comes of this discussion.  I swear its just like a merry go round.  I know they need to get this figured out while we are here, or at least have a better game plan by the time we leave.

Here We Go Again

Not even 24 hours after leaving the hospital, we are right back here.  This time, though, they admitted my baby.  I knew that something was wrong, and boy was I right.  This time, I really wish I wasn't.  When we got home from clinic yesterday, it was like everything just went downhill from there.  LJ started throwing up more, and after a while his fever came back, yet again, and I couldn't keep it won with the Tylenol, yet again.  The real killer though, was that he just stopped peeing, and that's when I knew he had to come in to emergency.  This morning, we got up at 8 am and got ready to come in.  When we got here I told the doctors how they gave him Ibuprofen in clinic yesterday, and they said that he shouldn't have had that unless it was extreme, which it wasn't because he only had a low grade fever at that point.  This had me furious, #1 because I asked them to double check about giving him Ibuprofen, and they said it was fine, now this was 2 different doctors in Pediatrics that told me this mind you; and 2, because this is the second time that they have done something they should not have done pertaining to my son and his transplant without double checking whether or not it was safe for him, but this is supposed to be his primary doctor.  Are you kidding me?  I am completely outdone by this.  So obviously, my baby can't have Ibuprofen, because being that he already had a fever, and was slightly dehydrated already, it just further aggravated his condition, and made his kidney unhappy.  Then, when we came in today, his fever was 102.3.  I am so glad I brought him in, but I really wish that I would have pushed the issue so that he could have just stayed yesterday so it would not have gotten so bad because his creatinine was over 2, now that is scary. I pray to God that this comes  back down to his normal range, and soon.  All he keeps saying is that he just wants to go home.  I feel so terrible.  I hate when my Angel is sick, and it seems like he is always sick.  He was just doing so good, then Boom!!  That's our life though, same old thing.  He did finally go pee once they got some IV fluids into him thank goodness, so I guess we will wait to see what his labs look like tomorrow.  His chest x-ray was fine, and I am waiting for the results of his ultrasound.  One test came back positive for the common cold, which I already knew about...duh!  The biggest thing is working on getting his kidney back in fighting shape.  Lord help my baby.

Never a Dull Moment

Of course, with us just celebrating LJ's 5th birthday, we had to have some kind of catastrophic situation happen, or it wouldn't be normal.  Just 24 hours after his birthday, my baby, got sick.  It started with just a sneeze, and I had a feeling it was going to turn into something big just because it's been a while since he's had a cold or anything besides this GI issue.  I must have jinxed it because, I swear, it was like something just attacked my Poo Poo.  He got a fever, and started throwing up.  I took him to the doctor today, thinking they were going to admit him.  I had an overnight bag packed and everything, and they just told me to watch him, and o keep giving him Tylenol, and make sure he is hydrated.  I was sure they would keep him with everything he has going on already, but I guess I was wrong.  I have a feeling we will be in emergency before the holiday weekend is over though.  I was supposed to have a barbecue for LJ's birthday this weekend, but that was before he got sick, so I had to cancel it, and reschedule for next weekend.  I hope he is feeling better by then.  God I hate it when my honey bunny is sick.  It takes a lot out of both of us, him more than me obviously.  I am so stressed out.  My poor baby can never catch a break.  He has been handling it the best that he can though, as always.  So, we will just tough this thing out until it's over.  Hopefully, he gets better real soon, and it just a viral infection like they say, and nothing any more serious.

                                                         

My angel at the doctor today

It's My Baby's Birthday!!!!!

I can't believe my big boy is 5 years old already!  Where does the time go?  I remember when the doctor told me she didn't think he would make it out of the delivery room.  Now, here we are, 2 years post transplant, doing great, despite some minor things.  We have definitely had our ups and downs over the years, but my baby has defied the odds like you would not believe.   Despite all the nay sayers, and everyone who doubted him.  He has overcome so many obstacles over the years, and there are of course many more to go, but he will get through it.  I will be here by his side as long as my heart is still beating, and even still in his heart when it is not.  My little man is such a soldier.  I wish that his father could be here to see him now.  I know that he is so proud of him, even though he can't be with us.  I Love my Baby so much.  I am so proud of how far he has come, and I am looking forward to seeing how far he continues to go.  I want to give a huge birthday shout out to my baby, who is not a bay anymore, my grown man, as he likes to say  HAPPY BIRTHDAY LJ!!!!! Mommy loves you to the moon and back.  

He had a good day today too.  They sang Happy Birthday to him at school, and we went for a walk this afternoon.  He was so happy when he took his bath tonight, and we talked about his day.

On our way to school

Just the two of us 

My King 

Too cool

The end of the night

We've been Busy

LJ in his new wheels playin'  Mario Kart 

I hope everybody is having a great week so far, enjoying the lovely weather.  It's always hard getting back into the swing of things after the weekend.    It was a nice weekend too.  We have had a lot going on lately.  I got so tied up, I forgot to write it all down.

Mario Kart again

     LJ finally got his wheelchair, like his very own wheelchair to ride in.  He had been using a loaner stroller from the loan closet, but now he has a chair of his own that he can get around in.  Of course the main objective is still working on walking, but with him starting school in September, he has to have something to be transported on the bus in.  He got to pick the color himself, and he chose green.  He loves it because he can roll around and go wherever in his classroom at preschool, and he is really good at getting around in it too.

     We had his placement meeting last week with the school district to find out what school he will be going to next year too, so that was pretty big.  I am so nervous about my baby actually going to school for a whole day.  I think I'm more nervous than he is, but he's never been in school, so he don't really know what to expect, lol.  I've been there, done that.   The program that he is going to be going into is call the GEM (Growth and Education for students with Multiple disabilities) program.  It is the only one in the district that will challenge him academically, while catering to his medical and physical needs.  I am planning on touring the school next week so I can get a better idea of how LJ's day will be, and hopefully feel a little more comfortable about it myself since my baby will be away from me all day.

     This weekend, we had the most amazing weekend.  In preparation for LJ's birthday, we went to go stay at the Brian Bisgrove Home of Courage.  I promise you, it was a wonderful experience.  They welcome families of children who have life threatening, or severe medical conditions to stay for an entire weekend, free of charge, and spend family time in their beautiful cabin.  Food is provided, there are activities, there is a lake nearby, and it gives you a chance to get away from the chaos of life when you deal with the things that we are so use to dealing with.  I urge you to please check out their website to find out more about the home, and how to register for this fantastic opportunity for your family.  Its is truly one that you will appreciate.  I cannot thank everyone at the home enough for their hospitality, and generosity.  It was so very much needed.  LJ loved it, once he adjusted to life without wi-fi, lol.  Seriously, I could not have asked for more.  It was perfect, and so relaxing.

The cabin how it looked when we arrived, so dark, but still beautiful

A better view in the daylight

My big, strong man

He wanted to go topless, lol

I love that smile :) 

Just chillin'

Just the two of us

Love of my life 

A Special Thank You

Traveling back and forth to Boston for LJ's appointments is not only stressful, but can be extremely expensive.  Sometimes, like this last time, we are lucky enough to to have the opportunity to be catch a flight.  For that I have to extend my deepest thanks to the folks at Angel Flight.  They are so amazing!  They have been such a huge help to us on a few occasions, and it has been a huge weight lifted off my shoulders each time.  The pilots volunteer their planes to fly patients and families with special medical needs to and from non emergency medical appointments free of charge.  They are a God send.  I heard about this program from my social worker at the hospital here in Rochester, NY.  You can go to their website to find out more information, but you call to request a flight, and if there are pilots available, they will sign up to take you and pick you up.  It's pretty much that simple.  They have some of the nicest people there, and I absolutely love them.  The only thing is that someone has to sign up to fly you, and usually it depends on the weather, but other than that, if they can find you a pilot, it is such a stress reliever.  I mean honestly, there is enough to worry about.  Take it from me, they picked a perfect name.  I just wanted to let you guys know that.  Please check them out if you have never heard of them before.  They may be a resource that could be helpful to you or your loved ones.  I am so thankful for them.

Us on our way to Boston, it was windy! Such A Great Pilot

LJ relaxing on the plane

Just landed with another Awesome Pilot!