March 31,2012

Holy moly...who knew staying in a hospital would be so exhausting!! Just when the drs stop making their rounds, dietary comes with Coles food, then every 4 hours the nurse comes for vitals, every 6 hours she comes for his anti fungal medicine then every 8 hours for his antibiotics! Woah...it seems like even more once I write it out! So once we get settled in to either nap or sleep for the night, we get awaken once again :/.

2 days ago Cole was started on an anti fungal (flagyl) for c diff. It's a bacteria in his intestines that causes diaherr. Once his stools become more solid (sorry for the image lol) then they'll retest to see if it's still present!

The resident came in this morning & said that Coles hemoglobin level is at 7.6, but they need it to at least be at 8 so a transfusion it is :(. I hope this perks him up more...he's been a lot more sleepy today but I assume that's probably why.

Wow this week has definitely been one for the books. Bacteria infection in his blood, c diff in his stool and now low hemoglobin. Exciting right?! I beg to differ!

They're also keeping a close eye on Coles line. This line is much much bigger and it's still bleeding/discharging so they want to make sure it's healing correctly...yippee! (. I think my sarcasm has come out full fledge this past week!).

Little mans trying his hardest to crawl off the bench in the room so before we have to make an unexpected ER tri I better go!

Please please please continue praying!!

-Coles Mommy

March 28th

I'm so frustrated about so many things..

The bacterial infection in Coles blood has put off his transplant for now...I don't knowing a date yet but they said probably a week or 2 later.

Then ive become overwhelming homesick today! Maybe it's because. Chris has been working so much that he hasn't had a chance to come see us, but as I tell him absence makes the heart grow fonder...so I've got to stay strong!

Im so glad my early bday present was my iPad...I've got a blogger apt for this and so many things for Cole! Also it given me a chance to catch up on reading...in 2 days I've finished 2 40 page books it's a series called 50 shades of grey...very intriguing,but definitely for a mature audience!

Coles finally asleep on my chest. He's had such a restless day today, you can tell hes running out of things to occupy him.

Tomorrow Dr Morales will change him to just one antibiotic as opposed to the 2 he's on now and he will stay on th at least til next Tue or Wed, but as long as he continues to not have fever and be ok then he will begin Campath early next week!

This Mommy is worn out so I'll hopefully update more tomorrow!

-Coles Mommy

March 24th & 25th

Whata day...9am last night Cole felt warm so Chris checked his temp & it was 100.5...Cole hasn't ran fever since all this began so I was scared...terrified actually. I called the on call hemoc dr in New Orleans and she told us to head to Ochsner in Slidell (since it was closer). They did an X-ray (checking for pneumonia) andblood tests (to check levels). Everything came back ok...except his levels were wayyyy off so of course they redid his testing and it came back normal so they transferred us to Children's. When we got to Children's they tested him for rsv and flu and both were negative...thank you Jesus! The put us on 4west & I loveeeee it here! We did get anything but catnaps yesterday so needless to say we slept so good last night! Today Cole met a real life robot...he was amazed and shoot if my phone was in the room so no pics :(. Now he's napping...I'm blogging and he's receiving antibiotics. As long as his culture comes back ok tomorrow he'll start Campari...the dreaded Campari-yuk!

-Coles Mommy

What a day....

Well Katrina decided to revisit this morning when we had to be at Children's...yuk that was some horrible traffic! Cole had to be at Childrens for 7am (meaning no intake since 1230 last night) and he is JUST being taken to the back for the procedure (it's 1:07 :/). Can you imagine not eating for 12 hours! The surgeon (Dr Valerie) had an emergency case that took 5 hours so that's what delayed us....they gave Cole some "goofy juice" to calm him down some and all hd do was look at me & giggle haha...sweet boy! Daddy came with us today,thankfully, but man this day mAkes for some cranky people, lol. I've been so overwhelmed lately that last night I broke down & finally just asked Chris " do you think I'll be able to do this?!". He laughed....even though I dont give him enough credit...he keeps me out of the looney bin! :) love you babe!! I just keep thinking how Cole & Chris are going to do being separated during transplant...but absence makes the heart grow fonder I suppose! :) Coles almost finished with his procedure already 'till next time everyone! - Coles Mommy

WHEW!!!!

WHEW!  What a hectic past few weeks...


I want to first say that I have read the most amazing book...it's called 90 Minutest in Heaven.  If you haven't read it...go to Walmart NOW! :)  It's basically about a preacher on his way home from a conference when he gets in a wreck...he recalls details of heaven (which give me chills) & he recalls family & friends who have passed that he got to see and so forth.  Then he wakes up to a man praying and singing and him singing as well..Okay I'm not going to give too much off about it, but man oh man was it good!...definetly a re-reader!!  It put a lot of things into perspective...things about Cole's illness & things that I live with everyday.


On to Mr. Cole bug---


Well let's just say that by today, Cole has met just about every specialist that Children's Hospital of New Orleans offers.  The "work-up" for his transplant requires this so it makes for a hectic schedule!  Let's just put it this way...this is what this week & next consists of....

• Today-Bone Marrow Aspiration in both hips and a spinal tap (sedation)
• Tomorrow-FREEEE!
• Thursday-Blood Transfusion (his count was 8.2 & a count of 8 requires a transfusion)-By the way the transfusion takes about 5 HOURS! :/
• Friday-Placement of new line (sedation)
• Monday-Psychology Evaluation
• Tuesday-Admittance for Campath
• Wed., Thur., Fri.-Campath
• Sat.-Discharge!

WHEWW!!  & that's just dr. apts. that doesn't include squeezing moving into the process.  Yes...moving!  We sold our trailer & the new owners will be here to pick it up Monday...holy cow I need more of me (possibly a clone..hmm!)


I'm so stressed...even though I've said this time & time again about everything I truly mean it now more than ever.  I'm constantly stopping in mid thought and just praying "God PLEASE give me the courage to face what's the come, the stamina to keep up and the strength to keep moving"  and I know as soon as I start talking God knows just what I'm about to say!


I can't make this entry too long because it's getting late and tomorrow is about the only day free to finally move what I can out....I'm hoping to get back on soon, but it might be next week when we're in the hospital before I get another chance!


I love each & every one of you guys & I ask that you  please continue to pray for Cole and my family.  We have a long hard road facing Cole, but I just know that he's come this far doing as well as he can that I won't believe for one moment that he'll turn back now :)


LOVE YALL!

Dr. Apt & Chemo (3/6 & 3/7)

AHHHHHH!!!

ok I'm good...

Where to even begin..let's first talking about this "dr. apt." he had on Tuesday....well we got there that morning & had to go to sedation because Cole had a hearing test, MRI, catscan, xray and all that scheduled.  Well the sedation dr. gave Cole Precedex for his hearing test.  After the hearing test he started waking up so when he got his MRI/etc. they then gave him Propofol...ok so he had to be sedated twice...yeah twice in one day.  At the time, I was ok with it because I knew they had to get these tests, but the more I think about it it aggrivates me!  Why 2x?  Ya know...it's ridiculous.  Then after his tests he had to meet with his dietician then had to go to his Physical Therapy eval.  After ALLLLL of this he was suppose to get his VP-16 (chemo), but he was so out of it they said for us to come back the following day.  They normally make us stay there until the sleepy medicine wears completely off, but they told us we could go & Lordy be was he grouchy and tired by the time we got home.  He went to sleep & slept till 7pm then went back to sleep at 8pm & woke up at 8am.  Man...I don't see how he does it.  I honestly think my little 11 mo. old is much stronger than I am & I'm a darn adult! 

Cole's chemo treatment on Wednesday was bitter sweet.  We were told this was his last treatment of VP-16 before he goes in for his transplant.  I/We are so use to the schedule of coming and coming to Children's weekly/biweekly for his chemo that it's weird not to be going anymore.  I told the nurses that they'll need to come visit me in 4 west while Cole's doing his transplant to keep me sain! LOL...they agreed laughingly! 

It seems to surreal to think that in just a few short weeks that Cole will be admitted for his transplant.  It felt like this time would never come, but now that it's close I'm terrified.  Ok I admitted it..I'm scared...but do you blame me?  My hearts telling me God has this Laci just chill, but of course my being the one to overanalyze is going to be a worry wart.  I just keep replaying this picture in my mind of a scared lifeless pale little boy just looking at me like WHY ME!?...I pray to God everyday all day to strengthen Cole's body to withstand what is to come & to mentally have me ready for what is to come....

Everytime I have any doubt about his procedure I just turn to look at Cole & either he smiles or does something goofy & he totally distracts me & I'm so thankful for that.  I TRULY believe that God knows what he's doing.  & I believe that I spiritually & mentally needed to be strengthened and he's doing that by placing Cole in my life.  I can't wait for Cole to get older & to show him this blog of step-by-step what he went through to show him how strong he truly is.  When he has a weak moment I'll be there to remind him about the journey is endured!!

I feel so overwhelmed.  I feel like I have 10,000 things/feelings going through my mind...what's going to happen, how will Cole be, how will I be, how will Chris & our family be, Is our business going to continue to prosper, Are we going to financially be able to do all of this...etc!  The list goes on & on about my worries!  I just have to lay them at the foot of the cross & know that my Lord & Savior WILL take care of us!

I don't want this blog to turn into me, me, me, I, I, I...but gosh this feels good to vent what I've been holding in!  You better believe that I'll be blogging daily in the hospital!!

You know I really wish that my child wouldn't have this horrible disease, but gosh it could be worse.  There is a little girl that's Cole's age that also has HLH & she will have to have a liver transplant at some time...WOW...can you imagine!  Then I have a cousin...a beautiful, strong cousin that has stage 3 breast cancer....she's so young!, but her faith WILL pull her through this...Calynn we love you soooo much!

I just have to continue to pray & stay strong...that's all we can do!

-Cole's Mommy


“And my God will meet all your needs according to his glorious riches in Christ Jesus.” – Phil 4:19

Apt., Apt., Apt. & Family Conference (2/29)

Where to even begin.....

Yesterday was a day for the books.  It started out with an EKG & Eco that Cole was not too happy about, so they couldn't even finish :/.  Then we had a 5 hour break then a meeting with Occupational Therapy.  They said Cole is on target for his age and even above in some categories!  YAY...GO COLE!  Then after was the dreaded family conference....


I honestly don't even know where to start...I guess on a good note...I LOVE his transplant doctor.  Dr. Yu is so nice & I'm so thankful for that. She started by telling us that his transplant date has been moved to April 9, 2012 intstead of April 8th.  She said that Cole will be admitted between 12-3 on the 9th and we'll go to a regular room.  They'll then begin looking over his body to make sure there are no rashes, etc.  Then around 6-8 that night he will receive a "special bath" to disinfect him.  After that he will be brought to his transplant room.  During that time, I will be required (since I'm staying with him 24/7) to wear a mask & gloves.  Ahhhh...can you imagine sleeping in that stuffy thing...but I'll make do!  Also, there will be no running water (ex. toilets, showers, sinks) in his transplant room.  They said that can cause bacteria to grow so I will be required to use a shower and bathroom in the hall that all the transplant parents and caregivers use.  Also, I cannot eat in the room.  Whenever I want to eat, I must go in the hallway or to the kitchen area.  UGH this stresses me out, but I know it's for the best.  I can see many many days ahead of blogging, reading and crossword puzzles!  On April 10th, he'll start a chemo called Fludarabine it'll be given over 30 min. for 5 days.  On the fifth day, April 14th,  he will also have a chemo medicine called Thiotepa.  Then on the 15th he'll have a chemo medicine called Melphalan.  Dr. Yu said their main concern for him having Thiotepa and Melphalan is liver problems.  It can cause (frequently) blood clots on his liver (VOD of the liver).  Wow...to think my child could possibly have blood clots...ughhh I'm so stressed just contemplating that!  I'm so scared because "FATAL" was mentioned SOOO many times during this conference.  I realise they HAVE to tell us the pros and cons, but hearing it made it oh so real and soooo scary!!  On April 16th & 17th he'll have 2 days of rest then on the 18th he'll have his cord blood transfusion which will last about 10-15 minutes.  How crazy to think the actual transfusion will be so short!  Between days 14 & 42 they'll be looking for engraftment.  1 month post BMT they want 35% cord and 3 months they want 75% cord.  3-5 weeks after BMT they probably will discharge & we'll have to go to the clinic every day.  We have the option, because we live close, to come home and travel everyday, but IDK if I want to.  They said we could stay at the Ronald McDonald House and I'm thinking we probably will because I don't want to be an hour away and he go down hill or something.  I just think about the worst possible thing I guess.  I need to stop doing that, but it's so hard to know the things to come for my little man!  100-120 days after BMT he'll be given IVIG and 2 years after the full transplant is about the time they'll say he's cured or not, but his entire life he'll be tested for side effects from the medicine he'll be getting. 

This previous paragraph stresses me out even typing it because it makes it seem that real yet again.  The entire way home yesterday I just kept praying for strength.  I kept telling God how scared I was and I truly am.  I'm still scared.  I'm scared of the "what if's".  You just never know, but I have to trust in the main man up stairs to take care of Cole.  Dr. Yu said yesterday that I need to get away some and not stay with Cole all the time.... ummm YEAH RIGHT...I refuse to leave him!  I haven't left him yet and I don't plan on it anytime soon!!!  Cole has got such a long road ahead of him, but I thank God that he is so young because I really don't think he knows what's going on.  He ALWAYS has a smile on his face no matter what...so that helps me to stay strong knowing how strong he is! 

Ya'll I can't even begin to explain just how scary this is.  I feel like he has to go through so much for being so young and this breaks my heart!  I don't want him sick...I don't want him going through all these life threatening procedures....this isn't fair!  I keep thinking about all the mommy & daddies that could care less about their child(ren) & they're so healthy...they're so lucky to not have to go through any of this!  Even though I say that, I wouldn't change Cole for the world.  In my eyes, he's perfect as can be and is my bestfriend! 

-Cole's Mommy
You have to accept whatever comes and the only important thing is that you meet it with courage and with the best that you have to give.
- Eleanor Roosevelt