Today, LJ had an evaluation for Occupational Therapy, so  he is going go have an OT come to his Daycare, which he hasn't even started yet.  He was supposed to start at daycare last week, but I got the corneal abrasion on Monday, then had a seizure on Tuesday, .......so it got pretty crazy, and everything changed for me in so many ways. 

Besides all that, I am anxious for my little man to be starting daycare, so he can be around other children.  He is always only with me.  He can have his physical therapist, and now occupational therapist come there, so it should be good.  I think that I am going to have a harder time with the adjustment than he is, but we shall see.

I was just watching him while he played with the lady doing the evaluation for OT.  My baby might not be walking yet, but he is so intelligent.  He is so opinionated, and self aware.  It is amazing.  The therapist was blown away by him, she kept talking about how smart he was.  I am so proud of him.  LJ has had so much to deal with in his 4 short years of life, but he has been so triumphant.  My little soldier!!!  My son is the best thing that has truly ever happened to me.  

This week was a very sobering one for myself, to say the least.  On Monday morning, I scratched my cornea, and was unable to see anything out of my left eye.  Then, on Tuesday, I suffered from a seizure.  I had never had one prior to this, and it scared me beyond belief.  I was in the bed sleeping, and Lee said she heard me hit the floor.  When she came to check and see what happened, I was on the floor, in the middle of a seizure.  She called the ambulance, and when I woke up, I was completely incoherent.  I was taken to the hospital, where they did a CAT scan, and ran some blood tests.  They told me that they did not have an exact cause for my seizure, and that I needed to follow up with my doctor, and neurology.  So now, I have to wait until Monday to see my doctor, and start investigating what happened.  Everybody is saying its stress, and not eating right.  I don't know what it was.  I just know, I don't ever want it to happen again.  I'm scared for my baby....  I'm all he has, and he needs me.  I gotta do better, for myself, and for him.  I focus so much on doing what I have to do to make sure he is as healthy as he can be, but I definitely do not do the same for myself, and I will be the first to admit it.  This was definitely a wake up call.  It is time for some long overdue changes in my life.  Stay tuned!!!!!!

Throwback Thursday newborn pics

Another throwback Thursday, and I want to take a trip down memory lane.  Here are some early pictures of LJ.  They are still a little hard for me to look back at, but the struggle was real, and my little conqueror has been through the trenches.  He deserves so much praise, he is a fighter!!!   I am extremely thankful for the young man that my son is growing to be.  It was so difficult back then, but he fought, and I fought, and he is here!   My heart breaks looking at these though, I can't lie.

LJ only a few hours old.  They thought he wouldn't make it out the delivery room so they brought me down to the NICU to see him as soon as they stitched me up.  I was in the hospital bed next to my son while he was in the NICU.

LJ was so fluid overload from his kidneys not getting rid of the urine while I was pregnant.  The pen marking on his stomach is where the doctors measured to show how much extra fluid he had on board.

LJ already had his dialysis catheter placed when he was just under a week old.  The doctors told me he wouldn't last the week without dialysis immediately....but LJ never started dialysis until he was 5 months old .  GOD IS GOOD!!!  Every little bit counts.

All I could do was stare at my little man from outside the incubator.  I wasn't even allowed to touch him because his blood pressure was too high, and the stimulation from me touching him caused it to go higher... so they said.

My baby getting older.  LJ was a couple weeks now, still hanging on.......still fighting!!

It was so hard seeing them always putting something in him. From tubes to IVs.  Here he has one in his head because it was hard for them to find a vein anywhere else.   

I  always used to sneak and hold my baby's hand, and he clearly wanted to be close to his mommy.  My angel had a broviac in his chest here.  He had that until he got his kidney transplant.  It was used for getting blood, since they  always had to run tests.

They finally allowed me to cover him with a blanket.  He wasn't allowed to have anything covering him because of  his blood pressure, and he would run a temperature easily.  Nowadays, LJ still gets hot super fast, but he came a long way from here.

Boy, I do not miss these times.  My baby was, and still is such a fighter.  Who cares what anybody says?  I know we don't!!!  #ThrowbackThursday

Making it Through the Day

So today, like most days, I have been struggling with the loss of my fiancé.  Although it has been 3 years now, majority of the time, I still have a hard time getting through the day.  I do have some things that I stick to, things I try to do, which tend to help me work through it.

                       Life After Losing the One you Love

I could never have imagined losing my fiancé to gun violence at such a young age.  He was just 27.  It tore my life apart.  Everyday I lie in bed in so much pain, hesitant to start my day.  Each night that my head hits the pillow, I am thankful that  made it another day without truly breaking down. I am sure to follow a few rules, as I call them, everyday to get through.

• Pray. Whether its out loud, or to myself.  I ask God everyday to help me, and give me strength to handle the heartache and pain that I will endure, and to push me to go on.
• Breathe.  As simple as it seems, and seeing as how we do it without even thinking about it; it's easy to forget to breathe.  Taking long deep breaths allow you to calm yourself, and think, clear your mind.  Breathing deeply releases tension, relaxes your mind and body, as well as helps to clear uneasy feelings from your body.  I have very frequent anxiety attacks since my fiancé's death, and breathing is extremely important in helping to deal with them.   There are many benefits to just taking long deep breaths.
• Cry.  This is the most important of all as far as I'm concerned.  Everyday, every time I feel like I need to let it out, I cry.  You have to let it out.  I am a very private person, and I do not like to show emotion in front of  people.  I barely cry in front of my own family, but sometimes you just gotta let go, and let God!  Having that anger inside builds up, and has to come out.  Sometimes I get numb, and crying is the only thing that lets me know I'm here.  It can be like that.  
• Never Forget.  This is so important to me because, I know some people try to block their loved one out of their mind.   I understand how hard remembering can be.  Blocking that person out, and acting like they were never here is hurtful to yourself.  They existed, and shared time and space with you, and in your heart, how could you not acknowledge that.  In a way, it's like trying to erase a part of your own life.  It is more than necessary, for the love you shared with, and for that person, to remember them always.  It can be however you choose to remember them.  There is so right or wrong way, but for me, my fiancé was my life.  He helped to shape me into the woman and mother that I am today,  and for that I will always honor his memory.

Losing someone that you love, whom you planned to spend your life with, is devastating.  Learning to live without them can be just as challenging.  You may never truly get over losing that special someone, but you have to find a way to make it through, and make the most of each day, for you, and everyone else who loves you.  God Bless!!

- Lacretia

   

Dealing with Dialysis for your Baby

5 Tips for Dealing with Dialysis

               when your baby needs treatment

Having a child on dialysis is a very scary thing, and it can be even scarier when you are a first time mom, like I was, or a mom doing it all by yourself....me again.  Well, I have learned over the years, a few, coping mechanisms, for lack of a better word.  But these five tips have helped me, I swore by them, and here they are.


1.  Have Faith.
This is the most important thing of all.  I promise you, me personally, I would not have been able to be there for my son, and I don't believe he would be here today, had it not been for my faith.  It is so important to keep yourself grounded spiritually. 

2.  Have Patience.
It can be so hard to be patient, but it is very necessary.  Trust me, you can drive yourself crazy with worrying, panicking, and all kinds of emotions.  You have to just be patient.  That's with treatments, which can be lengthy; doctors who may not have all the answers to your questions; especially patience with your child, who is no doubt scared and confused.

3.  Follow Dr.'s orders.
Following the orders given by your child's doctor is very important and detrimental to your child's health.  From medications, dosing, and treatment prescriptions.  I know it is hard, because treatments can be very long, and sometimes even uncomfortable for your child (which my son luckily didn't have much discomfort if any).  In order to keep your little one as healthy as possible, and in the best shape for hopefully a potential transplant, you must follow orders.

4. Be Honest. 
For a parent, it is a terribly painful thing to have a child who is chronically ill.  It is even harder to deal with harsh realities and possibilities, but you have to be honest with yourself about everything.  From treatments, to hospitalizations, and frequent doctors appointments, you have to prepare your self.  Along with that, it should go without saying, be honest with your child's doctor.  If you make any errors with medication, treatments, anything.  It's all about keeping your little one healthy.

5. Stay Well Rested.
It may sound funny, but dialysis is draining, physically, and emotionally.  I mean that for you and your child.  You have to get plenty of rest, and stay alert.  You need to be able to correctly give medication if necessary, as well as treatments, and be of sound mind when talking to doctors.

I hope this is helpful to you.  It's how I still live my life with my son post transplant. 


-Lacretia

Flash forward

Today I spent a lot of time reflecting on things.  After going over my journal entries so I could type then out, I was feeling really low.  LJ was sleep, and I just watched him, and so many memories, so many, spun around in my mind.  I thought of how empty I felt leaving the hospital without him after I gave birth, and everyday until I finally brought him home at 5 months old.  How many nights I wondered if he would ever get to even see his home.  Then, he woke up, and everything changed.  He looked up at me and said, "Oh!, hey mom!", and just like that, my heart smiled again.  My baby said "What's wrong with you mom? Can I have a hug?"  All of a sudden, all the hard  times just faded from my mind as he started singing a song from Daniel tiger's neighborhood.  It's so easy to be sad, and feel sorry for your situation, but when I see my son smile, or hear him say anything, I thank God.  I remember days when I was told he wouldn't make it, that he would never even breathe on his own.    Lord!  I am so thankful for everything.  The struggles especially, because without them, we wouldn't be who we are, him or I.  I'm thankful for each day that my son got to spend with his father before he was taken from us.  Even despite losing the love of my life, I am thankful for the many years we spent in love and loving each other, and most importantly for the greatest gift of all, my LJ.  So tonight as I sit and think, all I can do is thank God for everything!!

Throwback Thursday

On this throw back Thursday, I had to take it waaay back!!  Here are photos of us waiting on baby Joshua

  

June 28, 2011

LJ has been making so much progress, then today they tell me that he may need to have another chest tube put in.  The one that's in now is facing back- again, and it's not getting rid of the pneumothorax (air). I don't know how much I can take of this.  My angel is fighting so hard.  I just found out I have to leave the Ronald McDonald house.  I won't be able to be close to him anymore.  Today is like the worst day.  It all hurts so bad.  He is going through so much, but he is fighting, he really is.  I don't know what to do, how to react anymore.. To anything.  I never been so hurt in my entire life.  I feel numb inside.  I feel like this is all a dream, better yet, a nightmare.  Why him?  Why my angel?  The first time I get pregnant, the first baby I have, he's gotta hurt so much.  I would give anything to take away his pain and let him have a normal life.  As long as he is fighting, I'm gonna be here to support him.  Even if I have to come up here in the middle of the night from home.  I'll do whatever I gotta do to be with him. I prayed so hardcore him to get here.  I pray everyday for his recovery.  I love my baby more than anything in this whole world.  My life has no purpose without him.  I waited so long to become a mother, and I just wanna be a good other to my son.  They told me that the plan was to have me be able to hold him today, but that went out the window when they saw more air in his chest.  Dear Lord, I beg of you to place your hand on my baby's body and heal him.  Please correct everything that is wrong in his body.  Dear God give my baby the blessing that he needs.  Please give him a miracle now, and a blessing to continue to heal him.  Allow his lungs to heal, and whatever hole there is to close.  Allow his kidneys to heal and function normally.  Please bless his body God so that instead of getting things put in him, he can have them taken out.  Please allow him to progress in ways none of the doctors had ever imagined.  Please heal him Lord.  I beg of you to make him better, to allow his body to work the way you intended.  I thank you Lord, for every step forward.  Amen.

July 1, 2011

Last Journal entry

LJ off oscillator, now on ventilator

Ventilator settings:

Peep- 6

Volume- 22

Respiratory rate- 45.. Needs to be at 20 before he can breathe alone 

Chest tube is supposed to be taken out tonight.  I should be able to hold him soon.  His Foley catheter came out (the one in his penis).  They are gonna try to see if he pees without it as to whether or not they need to put it back in.  He also had an ultrasound of his kidneys.  He is on mess to help with his red blood cell production, and blood pressure.  His blood pressure was low after taking it, but is now in he normal range.

June 21, 2011

My Little Miracle

So today, LJ turns 4 weeks old.  He is such a fighter.  He is getting stronger everyday, against wag the doctors thought.  Every time they say he can't do something, he up and does it.  I love my baby!!  I pray for the day they call me and  tell me they think it's ok for him to come home.  I feel like that day is not too far off.  One day I just had this feeling come over me, that when he is 5 weeks old, he will be on his way out, or home.  I know in my heart that the odds of that are ridiculous, but I just feel it inside, and I can't shake it.  I know that God had something big in store for my angel.  He has come so far.  He is truly a miracle already.  He has major issues to overcome, but I honestly feel like God is gonna work it out.  I think he is going to heal his kidneys, and his lungs.  I honestly feel this.  I can't explain it to anybody, but I feel like God has let me know he's working on it.  A couple of days ago, the feeling came over me, and I just been going on it.  It's a good feeling, a strangely optimistic feeling.  I know that God is healing him.  I just know it.  From his lungs to his kidneys, I feel like God is working on it, no dialysis needed.  That would be the best gift I could ever receive, my baby's health and strength.  He means the world to me.  He has meant the world to me since the day I found out he was inside of me.  It's gonna get better for him.  God has let me know, I feel it inside.  My baby is going to show these doctors and nurses that He is in control.  That He has the final say, and you can never count anybody out until he says so.  LJ gonna shock these doctors, he gonna show everybody.  He really is, and I can't wait to be right there with my baby when he has gotten past all this, when he shows everybody what a real miracle baby he is, and how good God is, how he saves, how he heals.  How he makes miracles happen everyday.  I just feel it coming.  I get a little over excited and I have to calm myself cuz I don't want to get ahead of myself, but I really can't shake the feeling that a miracle is coming on.  My little LJ is gonna make people believers.  Some people doubt the healing power of God.  People think that man, or doctors, have the final say.  They seem to forget from time to time, that we are all created by a higher power.   One that is capable of anything, including the impossible, and the improbable, the unheard if, the not likely.  God is going to show these people  in the hospital that he is capable of all things.  He is going to, and is already in the process of healing my baby.  The doctors said they expect his kidneys to stop healing, but I know God has other plans, it's not about what they expect.  It's about what he will do, and they gonna see.  God is gonna show them, and so is LJ.

NITRIC MACHINE IS GONE!!!

He is making progress slowly but surely

38.5% oxygen

Mean pressure: 17 on oscillator 

Power: 3.5

Saddest days of my Life.....

June 15, 2011

When I came down today, Dr. Shieble said that LJs BP won't stay up on its own, he had to have dopamine to keep it up.  O2 back to 100%. She told me to stay by his bedside!! In case he drops, and won't come back up.  They believe he has an infection, and he was started on antibiotics this morning.  His ups and downs could be due to the infection.  He was increased on dopamine today and given hydro cortisone to keep his BP up.  His o2 sats have been about 85% with 100% oxygen.  Mean pressure on oscillator: 20, power is at 5.4.  The doctor just told me she doesn't ever see him getting off the ventilator.  His X-Ray showed his right lung trying to expand.  Pd catheter is still showing signs of leaking.... Dialysis will wait.  The nephrologist said his kidneys have less than 10% function, he definitely needs a transplant.. Has to be 20lbs at least.  Fist they said he wouldn't make it out the week he was born without dialysis, but here he is still fighting, no dialysis yet!!!

Later....

Today was one of the most terrifying days of my life.  To hear the doctor say that I should stay by his bedside literally crippled me.  The thought of losing my son was one that I have been trying to push to the back of my mind all this time.   I prayed for him all my life.  Now that I finally have him, I don't want to lose him.  I will never give up on him.  If  he has ever reached his limit, he or God will let me know.  My son is a fighter and always has been since the day he was conceived.  He has never shown me any signs tat he is ready to throw in the towel.  This infection is a bump in the road for him because he was beginning to show signs of progression.  Maybe if he had the infection a couple of days ago, and they just realized that he may b showing signs.  I think that is what was causing him to be up and down.   I just pray to God that he helps my baby to get over this so that we can get on to the bigger challenges that are ahead of us.  He can do this!!  I know that he can do this.  My baby is a soldier.  I know the Lord did not bring him this far to leave him.   He has already, in his 3 weeks of life been through more than most people go through in an entire lifetime, and despite what many have said, he is still here, fighting everyday.  Facing different challenges, and still making it through.  Through all that he deals with, he still smiles sometimes, even though he is sedated, he still opens his eyes sometimes.  He tries so hard, he just shows that he wants so much to be here, to stick around, to prove everybody wrong, and I have faith in him, and faith in God, that he will do it.  That he will prove everybody wrong.  Just like his father said, "When you go so low, and you so down and out, there is no place to go, but up," and that's where LJ is at right now.  Things just gotta start looking up for him.  I know that they will.  He does have a lot to deal with.  I will never try to pretend that he doesn't, but miracles really do happen everyday, and he is just waiting for his turn, for the miracle that God has in store for him.  I know that God has a plan.  I don't know exactly what is it, or how it will play out, but he definitely has something planned for LJ.  He wouldn't have brought him all this way for nothing.  LJ wouldn't have fought so hard to get here for nothing.  He has a purpose to serve.  He has something to prove, something to give to the world.  We all just have to wait for him to show us.

Days when it was touch and go

A very personal journal entry from June 7, 2011

I always thought of myself as a good person.  Everyone makes bad decisions from time to time, but aside from that, I've been ok.  Every since I was a young girl, I wanted to be a great mommy someday.  When me and Josh got together, it was all we talked about, becoming parents, getting married, all that good stuff.  Seven years into the relationship, just before he goes away to do a bid, I end up pregnant.  I thought I was so lucky.  We would finally have a chance to start a family, until the problems arose.  I knew his kidneys were having trouble, but I never knew it was, or would end up so bad.  Now here we are, my baby is 2 weeks old, and his prognosis is very dim.  He has already had surgery placing a dialysis catheter in his belly, and he still has to overcome the challenge of getting his lungs to up to par to endure the treatment.  I pray for my baby's progress and recovery.  I pray that God blesses him ad heals him.  I waited all my life for my little LJ and I need him.  I try to be here for him as much as possible,  even though I am helpless in his care.  I just pray the Lord gives him the miracle that he deserves.  He has already been through a lot, and despite what many have said, he is still fighting to stick around.  He and I have been fighting together.  Dear Lord, please place your hand on my son, and heal him of his ailments.  Please place angels on his shoulders to protect him daily.  He needs you lord, he is my miracle.  Amen.

June 8, 2011

10:45 am  O2: 90, power on oscillator: 5.  Of catheter being drained by 4th floor specialists.  Nurse said blood gas was not good.  Oscillator went to 5.2.  Pd catheter drained almost 300 cc of fluid from his belly.  He looks very thin.  O2 hasn't went up much.  They turned his head back towards the window.  That seems to be his best side.

Meeting today

Lj opened his eyes again tonight

O2 sats went down to about 85, hearing noise in tube.  Nurses said it was ok.  He is still breathing over the machine (don't like that).  They put the oscillator to 6😔.

June 9, 2011

Am nurse Judy turned his head to the left side this am @9.  His breathing tube was changed, now his breathing has improved.  O2 sats above 90s, they started weaning oscillator 5.2.  The nurse said the tube was clogged... This was why he was breathing over the machine because he was bit even getting the air they were trying to put in him.  I had asked last week if they should change the tube because it might be clogged up, but was ignored.

June 10, 2011

The air accumulated back in his chest today.  It had appeared to be drained out.  They drained fluid from his abdomen (pd cath).  His sats were very good, O2 weaned down to 36%.

June 11, 2011

The air came back again.. Draining it...pm nurse Stacy said they may need to replace chest tube, sometimes they have to have 2 she said.  Fluid was drained again from pd catheter.  LJ got a new et tube again.  He had another clog lodged in his throat.  Nurse Lynn said his sats went down to around 30s, oxygen went back up.  Settings on oscillator, mean pressure:19, power: 3.4.

Started from the bottom.......

     At the hospital, I was given a journal when my son was born.   The woman from the Child Life department told me that it was to jot down memories in the NICU.  My perception of it though, was, "You better write down everything that happening right now because you don't have much time."   I barely wrote in it most days, but I took note of how my son was treated, and things I needed to watch.  Here are a few days of entries from my journal, just so you can get a glimpse of how it was:

June 6, 2011

"LJ opened his eyes today.  I finally got to see my baby's eyes.  Nan was his nurse tonight.  He received a blood transfusion, and they were able to wean his oxygen to 78%.  He had a great blood gas- no changes were made.  His head was turned to face the window tonight (when he opened his eyes he was facing the doorway).  He had a good night.  His O2 sats were high 90s.  His surgery for his catheter was Friday 6/3/11.  The surgeon said he did well."


June 7, 2011

"TWO WEEKS OLD!!!  This am LJ was turned to the door, he didn't respond well, so they turned him back towards the window.  They put his oxygen back to 90% and the power oscillator is 4.1.  The doctors say he needs to be at least at 50% oxygen steady to begin dialysis.  His creatinine is extremely high.
8:50pm: O2- 94-95, BP- 111/66, oscillator power-4.1/ mean pressure-25, O2 settings- 90% NO- 15ppm

8:55pm: BP-94/59, m=73
Nurse until 11pm said the best his stat have been all day.
LJ is getting a gas @ 9:15pm- results: Oscillator went up to 4.4/ has been getting weaned on O2 because his O2 sat is above 95.

9:25pm: O2-98, BP-101/62, m=74
@ 10pm O2%=80.  Helen nurse @ 11pm.

1am: O2- 97, BP- 115/78, m=87
O2 87% No major changes- rec'vd versed to relax him because he was moving his legs up.  Blood gas @ 1am results: oscillator went up to 4.7  ( more power means more shake to shake off  CO2)

@2am BP= 91/51, m=69  rec'vd 1 time dose of fentanyl to calm his breathing over the machine. 
Breathing over the machine all night- O2 went down to 85.  How can he get to 100 if he is not sedated enough to let the machine do the work for him?  What does O2 level depend on? his O2 saturation? if so, and he is breathing over the machine, then it will never stay up if he is not sedated.*** None of the sedation tonight has worked to stop him from trying to breath over the machine.