Class of 2016

Happy Tuesday Everybody!! Today my baby graduated from Preschool.  I am so proud of him.  He did so good.  Even after being out of school for such a long time, after being in and out of the hospital, he did great.  My little man is going to Kindergarten in September.  I can't believe how big he is getting.  Time just flies by, it's so crazy.  I remember my sister talking about  how he would be going to school soon when he was just a baby.  It feels like it was just yesterday, but it snuck up on us, and now it's right around the corner.  We've been slowly trying to work on getting to bed earlier to get prepared for school. It is gonna be such a big transition for him.  I'm excited and nervous at the same time, but i know he will do good.  I just want to make sure that this school gives him everything that he needs in all areas, not just academically, or medically, or vice, versa.  Since we were in the hospital so much recently, I didn't get a chance to go to tour the school before it let out for summer, but hopefully they have some type of orientation for students and families before classes actually begin.  If not, I' sure there is something that can be arranged.  I am definitely going to look into it.  Anyway, LJ was so excited to see everybody at the ceremony today.  He loves being the center of attention, so when he heard his name over the microphone, and saw his picture on the big screen, he was all bashful.  It was adorable.  I love my little man.  It was a very nice ceremony, for all of the children of Daystar, but there were only 3 actual graduates.  It was LJ, and 2 others, he was the only one going to a school in the city school district though.  He is going to do awesome, I know he is.  I can't wait.

Little by Little

It's been a few days now, and its hard to say how much better LJ is doing.  The doctors say that by days 4 and 5 that this virus usually is the worst, and that's about where he is.  During the day he seems to have more energy than he did in the beginning, which is good, but he is still coughing a lot, which is still making him throw up.  That's what worries me the most because I know when he throws up, that's him losing out on his hydration, and that's where the problem comes in.  His labs were better today, so that is another good thing.  His creatnine was good at .45.  It hasn't been that low since right after transplant.  All of the doctors were surprised at that one.  They actually wanted to send us home today.  Between the tummy trouble, and him still coughing like crazy though, I wanted to stay another night, just to see what his labs look like tomorrow.  I wanted to make sure that if he had more issues with keeping his milk down, that I could see how it affected his labs.  He did throw up again tonight, so we will have to see what it does to his lab work in the morning, and whether or not they still feel as comfortable sending us home.  I can deal with everything on my own, it's just that I want to get home and stay there.  I am tired of bouncing back and fourth between home and the hospital, and so is LJ.  I mean, he still haven't even had his birthday party yet, and it's almost July.  So, I'm just holding my breath until the morning, hoping that everything OK, and LJ don't get any worse.  This cough needs to hurry up and let up on my baby cuz it's kickin' his butt.

Looking Back

I just came across this video I made for LJ after transplant, and it reminded me of how strong he is.  This is just a small bump in the road that we are dealing with right now.  My angel has been through so much worse, and came out on top every time.   It's never easy, but we will get through it.  He's a fighter, a conqueror.  He will be just fine.

Long Night

Last night I didn't get one bit of sleep, but that's how it is sometimes.  My poor baby was coughing all night, his nose was running, and his was puking off and on until he fell asleep.  After that, I just watched him to make sure he was good.  I was worried about him because I didn't feel like he was getting enough fluids all day compared to what he was putting out, then at one point his diapers seemed to taper off.  I spoke to the resident on call about it, but he swore that they were watching everything, and LJ was not getting too far behind.  They had him on his milk though, and he was spitting up, so I told them that he needed to be switched to IV fluids because it was no way he was gonna get any sleep if he kept on with the milk, so finally at 4 am, they did.  He went to sleep not too long after that.  This morning they did hook him back up to his milk, but he hasn't thrown up anymore, so that's a good thing, but I did tell them to have it going at a slower rate.  So far it's been OK.  Now, he is back to having his tummy trouble, and they tested his poops again.  Surprise, surprise, he tested positive for C- diff again.  So he is back on vancomycin, and now we have to see how much that doesn't work for him again.  It's back to the drawing board with that whole thing.   My baby is really catchin' it right now in this department.  He managed to get a away with feeling better for a day and a half, that is insane.   The plan is to get him on probiotics as soon as he is done with his medicine this time so that this bacteria doesn't gt a chance to repopulate hopefully.  He just never had these issues before, now he can't seem to shake it; this and the cold.  So, we are just here toughing it out til things get better I guess.  LJ said he misses his friends at Daycare.  I felt so bad.  I told him that he will be able to see them soon, he is supposed to be graduating at the end of the month.  At the rate things are going, I just hope that he can make it there to see them before some of them leave for the summer.

Poor Baby

It's hard seeing your children sick.  Not just for children with chronic illness', but for any parent.  For parents like me though, it is just a little harder sometimes.  The doctors found out that LJ has para influenza when they did a nasal swab today.  They are still waiting for his blood cultures to make sure nothing else is going on besides that though.   So, this is something like a bad cold they told me.  Of course I looked it up, and he does have all the symptoms.  They keep telling me that he probably caught it last time he was in the hospital, and he didn't start having symptoms until he got home because it takes a few days to manifest itself.  Like that's suppose to make me feel better or something.  I hate seeing him like this.  He is coughing non stop, and his nose is running like a faucet; it's red from me wiping it so much.  He's been throwing up and his diarrhea is back...wonderful!  He only had a break from that for all of a day and a half.  My baby is such a trooper usually, but when he gets sick like this, it kicks his butt.  He's really tearing at my heart too cuz all he keeps saying is he is scared and wants to go home.  Now, I'm use to him saying h wants to go home, but the scared thing is what's got me.  I just wanna break down, but I gotta be strong for him.  I just wish I could do more.   It's like, as a mother your children look at you like their savior, and when you can't help them, or make it better, you feel powerless, and I feel that way more often than not given everything that my little man goes through.  It's tough right now, but things will get better real soon.

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Speechless

I am completely at a loss for words right now.  We are back in the hospital, yet again.  LJ has a fever, a cough, a runny nose, and he is puking everywhere.  I don't even know what to do anymore.  It's like ever since he turned 5 years old, he has been sick.  This is crazy!  The doctor said he probably got sick when he was admitted this last time, and it didn't hit him until he got home, WTF!  I am dumbfounded.  So, needless to say, we have been through the whole run around today.  He had an ultrasound, chest x-rays, and of course a ton of blood work, with more to come.  Nothing so far except a little dehydration from throwing up all day, but I told them that was gonna be the case.  I told them he would be getting dehydrated yesterday.  Now, as usual, we have to play the waiting game.  I hate this so much.  I wish I could just take all of this for my baby.  Ugh!

Can't Seem to Catch a Break

What a way to end the week!  Today I woke up at 6 o'clock to my baby burning up next to me.  I couldn't believe it was happening all over again.  I checked his temperature, and it was almost 100.  I know that the doctor had told me before that when you check a temp under the arm, it could actually be about 2 degrees higher than what the thermometer reads, so I gave him some Tylenol to see if I could bring it down, and I waited a little bit to call the doctor to get him in today.  When I called the Pediatrician's office, they told me that they don't worry about fevers unless it's been going on at lest 3 days.  I told them I needed someone to see him because he just got out of the hospital, and the doctors told me to bring him back in if he got another fever.  I's crazy to me that I had to even debate the fact that my child needed to be seen by a doctor, but anyway.  LJ spit up the Tylenol that I gave him, but he was able to keep down his milk.  I gave him another dose of Tylenol before I took him to the doctor because his appointment wasn't until 1 pm, and he actually had blood work before.  His blood work ended up being OK.  His potassium was fine today, so that was good, and they checked his urine, which was fine too they said.  It took a while to get a sample because LJ fell asleep, so we had to wait until he got up to pee, but it was OK.  The only thing left is a blood culture, which will take 48 hours to come back.  So, as we got ready to go home, with instructions to come back if he got any worse,  LJ threw up all over himself, and the floor.  Surprisingly, they still sent us home.  I even asked if he had to stay, but they just said to keep a close eye on his wet diapers, so here we go again.

Take Two

Yesterday LJ was released from the hospital, again.  This time, we only ended up staying for two days, for observation.  All they did was check his blood work a couple times while he was inpatient, which, for the life of me, I can't understand why he couldn't have done as an outpatient.  Actually, they did give him an EKG when he first came in, which was normal, and they had him hooked up to a telemetry monitory that was constantly falling off, so I guess that is what justifies him being there.  Of course, it was, as always, an awful experience.  The nurses at Strong Hospital are terrible; most of them at least.  There are a few, very few, that I do actually like.  I have to always try to put that disclaimer out there.  Unfortunately, the ones that I like are never the ones who take care of LJ, they are the ones that he use to have from way back when he was small.   Anyway, I deal with what I have to in order to get my baby home and well, so, despite the laziness and incompetence of the people taking care of my child, we made it out.  It turned out that the doctor's never really figured out why LJ's potassium was elevated, but it went down on its own, without any intervention by them, so we have to go back to recheck his levels tomorrow to make sure they are still OK.  One other thing that came out of this visit, after nearly 6 months of back and fourth with his tummy trouble, they finally gave the OK and wrote him a prescription for Imodium.  He has been taking it for only a day and already seems so much better, but we will see how it goes as far as that.  Fingers crossed as always!

Not Again

Well, I hope that everyone had a nice weekend.  LJ and I were happy to be home, and looking forward to him getting back to school this week, but I'm not too sure when that is gonna happy now.  Today I had to take him to the hospital to get his lab work done, and see how things were since he was discharged on Friday.  First I got a message from the Nurse Practitioner, saying that his potassium was a little high, and she asked if the blood draw went OK.  Not even 30 minutes later, I get a phone call from the Nephrologist, and she said that she did not want him to go back to school tomorrow, because she wants him to be admitted back to the hospital today.  She doesn't like the fact that his potassium is up at 5.9, and she wants him to come in and have an EKG, and be monitored.  This  is crazy because he was just getting pumped with potassium a few days ago, now she is saying they are probably going to give him medicine to bring it down, and it will probably give him diarrhea, which, by the way, he has never actually gotten over from way back in January, so this should be very interesting.  I am going to really lose it on these people I think.  I don't ever want my baby to be in a dangerous situation, but I swear to God, they are forever pushing me to the limit.  Sometimes I feel like they are using my Angel as a Guinea pig.  Now I'm sitting here, waiting for the charge nurse to call me back to let me know when they have a bed available, which will probably be sometime later this evening, since it's already 6 at night now.  I am so annoyed.  My baby was so mad when I told him we had to go back to the hospital.  He is obviously gonna need another IV.  I am so tired of them poking him.  His poor little veins.  Lord grant me the strength.

Freedom!!!

We are finally home!  It feels so good to be back in my own bed, no more nurses coming in the room to do vitals every 4 hours, getting on my nerves, bothering my baby.  I understand, but then again, I don't.  Sometimes they be doing a little bit too much if you ask me.  I know that they have to check them and everything, but they do what's more convenient for them, because if they want to get them before 4 hours, they will, or if they want to wait, they will too.  Anyway, I had to complain to patient relations about all the crap that went on during our stay before I left.  I had to get it off my chest.  The attitudes that some of those nurses have really bothers me, like it's an inconvenience to them to have to take care of my child, and do what he needs done.  Um, excuse me, but I do this everyday, so you can do this while we are admitted to the hospital, I mean after all, it is your job...Seriously!  Thank goodness my baby did not have to stay there too long.  It seemed like forever, but we made it out in just under a week.  LJ's electrolytes got way better, so I will be taking him back for repeat labs on Monday just to make sure he's still doing good, then we have to follow up with his Nephrologist on the 14th.  Hopefully all is well.  He's definitely feeling like 1,000% better, which I love, so that is great to me.
                                                         

 

We did get some bad news while LJ was in the hospital this week though.  One of the Nephrologists from Boston Children's Hospital, Dr.Harmon,  passed away last weekend.  It broke my heart to hear the news. He was such a nice doctor.  We just saw him we were in Boston in April and he was crackin' jokes on LJ's hat because it was a NY Yankees hat, and he said that it was dangerous to wear that in Boston.  I really liked him, he was so laid back and just a cool doctor.  It's so rare that you meet doctors like that.  I think almost all the doctors I have met in Boston are awesome actually :).   I am going to miss him though.  Dr. Harmon was the one who called me in the middle of the night to tell me to come to Boston for LJ's transplant, and he said this was the one we've been waiting for because it was the third time.  He was so great.  RIP Dr.Harmon.

Counting the Days

We are still here in the hospital, and the days are getting longer and longer.  LJ is doing better thank goodness.  He is getting so restless though.  All my baby talks about i going home, and playing Mario Kart Wii, lol.  It's so frustrating being here now because I feel like I can just take it from here.  Especially when I feel like everybody is doing such a terrible job taking care of my child.  It just makes me cringe to think of what would happen if I left him.

Last night I went off in here because LJ threw up his formula, yet again, because the nurse did not mix it with water.  I have had so many conversations about how his formula is supposed to be mixed, and because I wasn't watching her for one second when she brought it in, my baby got sick.  I'm mad at myself for not double checking, but I spoke to the doctors, and they told me that their was a note in the system for anyone who took care of LJ.  She said the nurses couldn't sign on to take care of him without seeing the note about his milk, and how to prepare it.  Obviously, either that was a lie, or somebody just wasn't paying attention.  That was negligence on somebody's part, and I am pissed about it.  Either way, I complained to patient relations about everything I have been going through because I am just fed up with all of this, and I just want to go home.  My baby is feeling a lot better, and frankly, he can get far better treatment at home, and be more comfortable at the same time.  Everything going on now can be maintained as an outpatient.  It's not like they don't have me bringing him up here constantly anyway.  I guess we will have to see what tomorrow brings with lab work, and how well my honey bee holds up through the night.