I first want to wish each Mama out there Happy Mothers Day!
I want to apologize for not blogging lately, but it's been a crazy few days!
Cole's ANC for the past few days has been at 0 so now we're just in a waiting game for his levels to start coming up...Lord this is definitely in your hands!!! His Platelets as well as his RBC is fluctuating so somedays he may need both. but today he hasn't needed either thankfully! The past few days he's gotten really hoarse sounding and drooling very bad...Dr Velez came in today and said he doesn't have any signs of Mucositis (sores) in his mouth, but he probably has them in his throat is why he won't eat and he's drooling and sounding hoarse so he has started on a morphine pump today. He constantly gets it and theres a button to push more if I feel like what he's getting isnt enough. This scares me...scares me a lot....my poor baby has so many lines and tubes running from him it's sad. I truly don't know how he's going to be able to get down and play without tearing something or pulling something down :( , but we'll make it work!
I know I say this all the time, but ya'll God is so good! Looking at my little man sprawled out sleeping and snoring makes me so grateful for God giving me the chance to take care of Cole like he deserves. Don't get me wrong I'd LOVE for us to be home living normal lives, but who would we be then? Now we're God loving people that are extremely grateful for our son!! :)
I hope each of you have a wonderful night...I'm about to snuggle with my bug and watch a little TV!
-Cole's Mommy
Sunday, May 13, 2012
Tuesday, May 8, 2012
May 7 & 8th (Day 0+ & 1+)
GOD IS AMAZING!!
Day 0+:
Cole's transplant went amazing. The transplant took about 20 minutes and it was over...quick huh? All this anticipation for 20 minutes lol. It's very common for BP to either spike or drop and Cole's did neither....he sat in my lap for the 20 minutes just as content as can be and I have no doubt in my mind that this was all thanks to God...to God be the glory!!! Please take a second, while you're reading this, to pray for this little boy down the hall from Cole. He also had a BMT and his BP bottomed out and they had to rush respiratory up here to help him. I asked him Grandpa that's staying with him how he was doing and he said better, but as you all know NOTHING is too big for our loving God to handle!!!
Cole was hooked to a heart monitor for 24 hours and nothing usual with that too!! YAY!
Day +1:
Today Cole's Hemogloban level was down to 7.5 so they're getting ready to give him some blood. They want it above 8 or 9 so after his blood he gets today, they'll recheck to see if he possibly might need more...they say this is normal! Cole's fluid is positive..meaning he has too much, but with all the meds he's getting he has to have them so they're also starting him on lasix today too! Poor thing is so puffy, but I know the lasix will help! IVIG will be started today too and he'll get that once a week...every Tuesday and that will continue for probably years until everything gets back to normal at least!
I know that I say this alot, but I can't thank God enough for what he's doing in our lives. Through Cole's horrible ordeal, my relationship with God has been strengthened so much. I know that there is no way Cole would be where he is today without God by his side! I'm so thankful that I was made as strong as I am to withstand all of this and that my little man is the trooper that he is :)
Mama is with Cole right now putting him to sleep so I can pay bills and finally do some blogging and man does it feel good to let go of all these thoughts rambling through my mind! Honestly, people have no clue what goes on daily in here. Meds around the clock (so sleep is few & far between) then at 9,1,5 & 9 he has these meds put in his ears, nose, belly button and butt to avoid anything growing...then also at those time he has a weird mouthwash to do to avoid bacteria growing in his mouth and this powder stuff to go under his armpits and in his groin to dry it out and each day he gets a special bath and his dressing changed on his line to keep that as clean as humanly possible...man oh man so much to do, but I'm glad I'm on a schedule now so I just go with the flow!
Work has been keeping Chris so busy lately that he doesn't get to come down here as much as he'd love to, but I'm so thankful for the work because that's hard to find nowadays! But yesterday he was able to come and visit and be here for Cole's transplant and I'm so thankful for that! After his transplant, he & I took an hour and went to a place called New York Pizza for lunch and OMG it's amazing...if you ever get this way it's on Magazine St. & I want to go back! Then after I wanted some icecream so we stopped by a place, also on Magazine St., called Sucre and OMG it's heaven in there! I had strawberry and chocolate gelato and these little dessert things and put it this way..if I lived here I'd be obese...I'd eat there everyday! :)
Well I guess it's about time to get back to the room and give little man his bath for the day before he gets his blood! I hope each & every one of you have an amazing day & may God bless you! Always remember...God shows you miracles everyday...whether small or big so keep your eyes open :)
-Cole's Mommy!!
Day 0+:
Cole's transplant went amazing. The transplant took about 20 minutes and it was over...quick huh? All this anticipation for 20 minutes lol. It's very common for BP to either spike or drop and Cole's did neither....he sat in my lap for the 20 minutes just as content as can be and I have no doubt in my mind that this was all thanks to God...to God be the glory!!! Please take a second, while you're reading this, to pray for this little boy down the hall from Cole. He also had a BMT and his BP bottomed out and they had to rush respiratory up here to help him. I asked him Grandpa that's staying with him how he was doing and he said better, but as you all know NOTHING is too big for our loving God to handle!!!
Cole was hooked to a heart monitor for 24 hours and nothing usual with that too!! YAY!
Day +1:
Today Cole's Hemogloban level was down to 7.5 so they're getting ready to give him some blood. They want it above 8 or 9 so after his blood he gets today, they'll recheck to see if he possibly might need more...they say this is normal! Cole's fluid is positive..meaning he has too much, but with all the meds he's getting he has to have them so they're also starting him on lasix today too! Poor thing is so puffy, but I know the lasix will help! IVIG will be started today too and he'll get that once a week...every Tuesday and that will continue for probably years until everything gets back to normal at least!
I know that I say this alot, but I can't thank God enough for what he's doing in our lives. Through Cole's horrible ordeal, my relationship with God has been strengthened so much. I know that there is no way Cole would be where he is today without God by his side! I'm so thankful that I was made as strong as I am to withstand all of this and that my little man is the trooper that he is :)
Mama is with Cole right now putting him to sleep so I can pay bills and finally do some blogging and man does it feel good to let go of all these thoughts rambling through my mind! Honestly, people have no clue what goes on daily in here. Meds around the clock (so sleep is few & far between) then at 9,1,5 & 9 he has these meds put in his ears, nose, belly button and butt to avoid anything growing...then also at those time he has a weird mouthwash to do to avoid bacteria growing in his mouth and this powder stuff to go under his armpits and in his groin to dry it out and each day he gets a special bath and his dressing changed on his line to keep that as clean as humanly possible...man oh man so much to do, but I'm glad I'm on a schedule now so I just go with the flow!
Work has been keeping Chris so busy lately that he doesn't get to come down here as much as he'd love to, but I'm so thankful for the work because that's hard to find nowadays! But yesterday he was able to come and visit and be here for Cole's transplant and I'm so thankful for that! After his transplant, he & I took an hour and went to a place called New York Pizza for lunch and OMG it's amazing...if you ever get this way it's on Magazine St. & I want to go back! Then after I wanted some icecream so we stopped by a place, also on Magazine St., called Sucre and OMG it's heaven in there! I had strawberry and chocolate gelato and these little dessert things and put it this way..if I lived here I'd be obese...I'd eat there everyday! :)
Well I guess it's about time to get back to the room and give little man his bath for the day before he gets his blood! I hope each & every one of you have an amazing day & may God bless you! Always remember...God shows you miracles everyday...whether small or big so keep your eyes open :)
-Cole's Mommy!!
Sunday, May 6, 2012
Day -1
These past week has been filled with a mixture of sad, frustrating, overwhelming and happy moments. Cole's "new life" will start tomorrow for day 0+!!! I'm so excited yet so scared about this day! Right now I'm sick to my stomach about it so I'm just goint o update more another time...not feeling into this tonight. Sorry guys.
-Cole's Mommy
-Cole's Mommy
Wednesday, May 2, 2012
May 2, 2012 (Day -5)
What a day....
Cole's blue line has completely stopped working. It's clotted off and won't even flush now :( His red line flushes, but it won't draw back meaning sticks for labs :(. He went today, per dr orders, for a dye study and they found that his red line can still be used tomorrow am to give his Fludarabine, but tomorrow around lunchtime he'll receive a totally brand new line.
I can only pray to God that this line won't result in another bacterial infection and that it'll actually work! I've been so aggravated today with everything...I try to stay positive with everything going on, but yesterday and today has been very tough to do that!!
Last night I had a breakdown, but I guess you need to have a breakdown every now and then to "breakup" :) I even found myself questioning if I was strong enough to do this....I, at that moment, closed my eyes and cried to God asking him to please reassure me that I can do this & that Cole can too. I told him that I know that his son hurt, but I pray that he'd make Cole whole in his name! I opened my eyes and instantly my tears dried up and I was ok....God is good isn't he!?
Cole will be NPO (no intake) from midnight until his procedure so I'm sure this is going to make for a long night...he's starting to get really cranky so a bedtime snack it is then some rest. My stomach is in knots about tomorrow, but I'm going to try to get some rest, but we'll see!
Until Next Time!
-Cole's Mommy
Cole's blue line has completely stopped working. It's clotted off and won't even flush now :( His red line flushes, but it won't draw back meaning sticks for labs :(. He went today, per dr orders, for a dye study and they found that his red line can still be used tomorrow am to give his Fludarabine, but tomorrow around lunchtime he'll receive a totally brand new line.
I can only pray to God that this line won't result in another bacterial infection and that it'll actually work! I've been so aggravated today with everything...I try to stay positive with everything going on, but yesterday and today has been very tough to do that!!
Last night I had a breakdown, but I guess you need to have a breakdown every now and then to "breakup" :) I even found myself questioning if I was strong enough to do this....I, at that moment, closed my eyes and cried to God asking him to please reassure me that I can do this & that Cole can too. I told him that I know that his son hurt, but I pray that he'd make Cole whole in his name! I opened my eyes and instantly my tears dried up and I was ok....God is good isn't he!?
Cole will be NPO (no intake) from midnight until his procedure so I'm sure this is going to make for a long night...he's starting to get really cranky so a bedtime snack it is then some rest. My stomach is in knots about tomorrow, but I'm going to try to get some rest, but we'll see!
Until Next Time!
-Cole's Mommy
Tuesday, May 1, 2012
May 1, 2012 (Day -6)
Holy moly what a day!! I thought today was going great....woke up to nothing, but positive things from Cole's nurses. Then he got his chemo with no hiccups....then the day took a turn!
Cole's night nurse came on and his fluid machine kept going off so she came in to flush it and realized it's clotted. We can see one small clot within the tubing, but she seems to think there's a bigger clot at the end because it won't even flush. I never say the word hate, but I HATE this line! I hate this line with a passion. He's had nothing but problems with it since day 1! His nurse is calling the on call dr. to figure out what to do...I have a gut feeling he'll be in for placement of a new line though...shocker! I don't mean to sound so negative, but I'm so mad...I just don't understand why...but I don't think I ever will. Why Cole? Why does he have to endure this stupid disease and the treatment that comes along with it?! It's no freaking fair! I say that, but in the same breath I think about a little boy Jenson that's batteling with HLH and they aren't expecting him to make it & a little girl Serenna is on and off again doing good... Iknow I probably sound selfish, but of course I only want whats best for Cole!!
This room is starting to get to him and I. He can't get on the floor and play because they say it isn't sanitary so if he plays he has to stay in this stupid 1 crib in the room that's about 5x7 in size! & I've cleaned this room and organized and reorganized over and over...it's starting to drive me nuts...who knew I'd miss cleaning, but I do so much!! I miss everything having a place and everything being in it's place as opposed to living out of suitcases like we are now.
I have so much to be thankful for, but I'm just so overwhelmed with everything going on. I mean who knew something as simple as eating in the same room as Cole would be something I take for granted...anytime I eat or have to shower I have to go down the hall and leave him in the room screaming. Today I did it more than I ever have before just because I needed to get out of this room, but I don't like him screaming so needless to say I guess I'll lose that extra 10 lb. I've been fighting to lose.
I'm so thankful to be able to vent on here because I might sound crazy but yes I talk to Cole but of course he doesn't talk back quite yet lol. He's starting to scream and fuss so I guess we'll try to get a little rest until they have to come stick him for labs since that stupid line doesn't want to work.
Until Next Time!
-Cole's Mommy
Cole's night nurse came on and his fluid machine kept going off so she came in to flush it and realized it's clotted. We can see one small clot within the tubing, but she seems to think there's a bigger clot at the end because it won't even flush. I never say the word hate, but I HATE this line! I hate this line with a passion. He's had nothing but problems with it since day 1! His nurse is calling the on call dr. to figure out what to do...I have a gut feeling he'll be in for placement of a new line though...shocker! I don't mean to sound so negative, but I'm so mad...I just don't understand why...but I don't think I ever will. Why Cole? Why does he have to endure this stupid disease and the treatment that comes along with it?! It's no freaking fair! I say that, but in the same breath I think about a little boy Jenson that's batteling with HLH and they aren't expecting him to make it & a little girl Serenna is on and off again doing good... Iknow I probably sound selfish, but of course I only want whats best for Cole!!
This room is starting to get to him and I. He can't get on the floor and play because they say it isn't sanitary so if he plays he has to stay in this stupid 1 crib in the room that's about 5x7 in size! & I've cleaned this room and organized and reorganized over and over...it's starting to drive me nuts...who knew I'd miss cleaning, but I do so much!! I miss everything having a place and everything being in it's place as opposed to living out of suitcases like we are now.
I have so much to be thankful for, but I'm just so overwhelmed with everything going on. I mean who knew something as simple as eating in the same room as Cole would be something I take for granted...anytime I eat or have to shower I have to go down the hall and leave him in the room screaming. Today I did it more than I ever have before just because I needed to get out of this room, but I don't like him screaming so needless to say I guess I'll lose that extra 10 lb. I've been fighting to lose.
I'm so thankful to be able to vent on here because I might sound crazy but yes I talk to Cole but of course he doesn't talk back quite yet lol. He's starting to scream and fuss so I guess we'll try to get a little rest until they have to come stick him for labs since that stupid line doesn't want to work.
Until Next Time!
-Cole's Mommy
Monday, April 30, 2012
April 30th (Day -7)
From now on my posts will be as follow (Day -7 which means seven days til transplant and then once its transplant day it will day Day 0 then from there it will be Day +1 as so forth)
We had to be at the hospital for 3 yesterday, it was about a quarter til and I was about 10 minutes away. I was going through the Wedny's drivethru and a man approached my car. I, of course, was a little chicken and barely rolled my window down, but he just wanted to tell me that I had a flat. WOW a flat...whata day I thought. He then told me that right next door they could fix it. Luckily my dad was behind me and luckily my tire didn't blow out on the interstate. Last night I was thinking about the eventful evening and I got the best feeling. I know that God was telling me to just let go and let him have control because HE'S GOT THIS! He knew I needed to hear that!!
We got in Coles sterile transplant room last night around 10 pm and sort of got settled in. I became very overwhelmed with his night nurse telling me everything I have to do daily. Last night I stayed up till well after midnight just thinking and going through my daily schedule and again I felt like I was having a panic attack. Right then and there I closed my eyes and I asked God for a wonderful nights rest for Cole & I and to wake up with a new outlook on everything. Needless to say, my Lord and Savior came through as always...we woke up this morning at 9am with big smiles on our faces and ready to tackle the day. I've done everything that needs to be done so far and haven't looked back...God is good isn't he!?
Cole has received his chemo for the day and is acting like his normal self still. I can only pray that this is an indication of what's to come! I thank God daily for making me strong enough to be Cole's mommy & for making him such a trooper to withstand anything that is laid in his path!!!
I'm debating switching over to caring bridge for my blog type thing instead of using this. I'm going to check it our and will definitely let each of you know what I decide to do!
Cole is getting tired (probably from the benedryl and zofran that he was pre medicated with) so I'm going to put him down for a nap. I hope everyone has a wonderful Monday and a safe and beautiful week!
Until next time!
_Cole's Mommy
We had to be at the hospital for 3 yesterday, it was about a quarter til and I was about 10 minutes away. I was going through the Wedny's drivethru and a man approached my car. I, of course, was a little chicken and barely rolled my window down, but he just wanted to tell me that I had a flat. WOW a flat...whata day I thought. He then told me that right next door they could fix it. Luckily my dad was behind me and luckily my tire didn't blow out on the interstate. Last night I was thinking about the eventful evening and I got the best feeling. I know that God was telling me to just let go and let him have control because HE'S GOT THIS! He knew I needed to hear that!!
We got in Coles sterile transplant room last night around 10 pm and sort of got settled in. I became very overwhelmed with his night nurse telling me everything I have to do daily. Last night I stayed up till well after midnight just thinking and going through my daily schedule and again I felt like I was having a panic attack. Right then and there I closed my eyes and I asked God for a wonderful nights rest for Cole & I and to wake up with a new outlook on everything. Needless to say, my Lord and Savior came through as always...we woke up this morning at 9am with big smiles on our faces and ready to tackle the day. I've done everything that needs to be done so far and haven't looked back...God is good isn't he!?
Cole has received his chemo for the day and is acting like his normal self still. I can only pray that this is an indication of what's to come! I thank God daily for making me strong enough to be Cole's mommy & for making him such a trooper to withstand anything that is laid in his path!!!
I'm debating switching over to caring bridge for my blog type thing instead of using this. I'm going to check it our and will definitely let each of you know what I decide to do!
Cole is getting tired (probably from the benedryl and zofran that he was pre medicated with) so I'm going to put him down for a nap. I hope everyone has a wonderful Monday and a safe and beautiful week!
Until next time!
_Cole's Mommy
Friday, April 27, 2012
April 27, 2012
To think within 48 hours, Cole will be admitted to Children's Hospital for what is to be one of the most important days in his life!
I'm terrified to say the least...I think I've been so here and there lately that I haven't (until yesterday) realized that this is going to be tough...extremely tough.
I keep praying to God to give me some type of sign to show me that Cole will be ok. It's so crazy because when I do (most of the time Cole is sleeping) & I happen to look over at him & he gives me the biggest grin in the midst of his snores. I don't know if that's God's sign for me, but I seem to think it is :)
By this time next week, Cole will have had some very potent Chemo medicines and will be on the verge of getting his BMT...how surreal because as scared as I am, it has seemed like this day/week/month would never come.
I ask each & every one of you to please remember Cole in each of your prayers within the next month or so. Thank you.
On a better note, Cole has started saying Mama :) It's his first real word besides Ugh oh & I am one VERY happy Mama!!! He's also become such a little dancer...he loves music so I have a feeling that'll be his fun times in the hospital...or at least I hope!
There's so much to get done before Sunday and I think my sweet husband wants to take me out to eat tonight...hope ya'll have a great weekend & until next time!!
-Cole's Mommy
I'm terrified to say the least...I think I've been so here and there lately that I haven't (until yesterday) realized that this is going to be tough...extremely tough.
I keep praying to God to give me some type of sign to show me that Cole will be ok. It's so crazy because when I do (most of the time Cole is sleeping) & I happen to look over at him & he gives me the biggest grin in the midst of his snores. I don't know if that's God's sign for me, but I seem to think it is :)
By this time next week, Cole will have had some very potent Chemo medicines and will be on the verge of getting his BMT...how surreal because as scared as I am, it has seemed like this day/week/month would never come.
I ask each & every one of you to please remember Cole in each of your prayers within the next month or so. Thank you.
On a better note, Cole has started saying Mama :) It's his first real word besides Ugh oh & I am one VERY happy Mama!!! He's also become such a little dancer...he loves music so I have a feeling that'll be his fun times in the hospital...or at least I hope!
There's so much to get done before Sunday and I think my sweet husband wants to take me out to eat tonight...hope ya'll have a great weekend & until next time!!
-Cole's Mommy
Wednesday, April 18, 2012
April 18, 2012
It's been so long, but here goes for what's been going on lately. Cole has been in the hospital since April 15th for his Campath. He's actually doing well with it because the only side effect he's had is fever. The nurse said how shocked she is of how well he's doing.....what a confidence boost!!! God is good! Campath goes over 6 hours per day with vitals every 15 minutes...ughhh what a headache!
Dr Velez just came in and said Coles levels are dropping accordingly and tomorrow it's looking like hell have his transfusion of blood and platelets...then by the way things are going well be discharged first thing Friday morning....yayyy I'm so ready to get in my bed and see my hubby!!!!
I can't even begin to thank God enough for making Cole as strong as he is!! Without God we are nothing....he is truly amazing!!! I can only hope, pray and trust in the Lord to continue to strengthen Cole for the weeks, months and years to come!!
God is our strength!!
-Coles Mommy
Dr Velez just came in and said Coles levels are dropping accordingly and tomorrow it's looking like hell have his transfusion of blood and platelets...then by the way things are going well be discharged first thing Friday morning....yayyy I'm so ready to get in my bed and see my hubby!!!!
I can't even begin to thank God enough for making Cole as strong as he is!! Without God we are nothing....he is truly amazing!!! I can only hope, pray and trust in the Lord to continue to strengthen Cole for the weeks, months and years to come!!
God is our strength!!
-Coles Mommy
Sunday, April 8, 2012
Easter Sunday!
HAPPY EASTER EVERYONE!!!
Sorry it's been awhile we've had such a busy weekend with Coles 1st birthday this past Friday!!! He had a yummy Paul's Pastry cake and Kk, Ana, Flop, Morgan, Granny, Papa and Nana came to visit him!:).
They've continued to run various tests on Cole and it's negative for UTI so they think the 1st test was contaminated. He's finally starting to test negative for his other infections as well! Go Cole!!!!!!!!
Dr. Yu is sending Cole home tomorrow for a week before he comes back for Campath. Hell have a weeks worth of antibiotics taken by mouth at home just to make sure everything is taken care of.
These past few weeks have been extremely overwhelming, but I can tell you that Jesus has stayed by our side this entire time!! I know that I've had my worries lately,but I take a second and close my eyes and if all I ask for is help then that's what Jesus does!!
I hope everyone has an amazing Easter and remembers the real reason for Easter! Love y'all!!
-Coles Mommy
Sorry it's been awhile we've had such a busy weekend with Coles 1st birthday this past Friday!!! He had a yummy Paul's Pastry cake and Kk, Ana, Flop, Morgan, Granny, Papa and Nana came to visit him!:).
They've continued to run various tests on Cole and it's negative for UTI so they think the 1st test was contaminated. He's finally starting to test negative for his other infections as well! Go Cole!!!!!!!!
Dr. Yu is sending Cole home tomorrow for a week before he comes back for Campath. Hell have a weeks worth of antibiotics taken by mouth at home just to make sure everything is taken care of.
These past few weeks have been extremely overwhelming, but I can tell you that Jesus has stayed by our side this entire time!! I know that I've had my worries lately,but I take a second and close my eyes and if all I ask for is help then that's what Jesus does!!
I hope everyone has an amazing Easter and remembers the real reason for Easter! Love y'all!!
-Coles Mommy
Monday, April 2, 2012
April 2, 2012
I don't even know where to start!!!....
Well as many of you know Cole came into the hospital for spiking fever. Then after a day or so he was diagnosed with a bacterial infection in his blood from his new line. After a few more days, they then diagnosed him with c diff which hurts his tummy really bad :(. Well after a few days they said that his WBC (white blood count) was elevated and they thought he might be having problems with his clotting factors of his blood. They elected to give him FFP (fresh frozen plasma) last night to see if thatd help with his line issue and with his WBC. Today his line is finally working (praise Jesus). Cole, in the meantime,is on 2 antibiotics, an anti fungal and around the clock fluids. This afternoon, while changing his diaper, I noticed these (excuse my descrition) pimple looking dots on his booty. I brought it to the drs attention during rounds & he said we have to keep a very close eye on it because they could become infection, but that it looked like bacterial on the skin. Oh really doc, well you'd THINK the 2 antibiotics and the anti fungal AND his 6 meds he gets am and 6 pm that something might help!?!?!? Arghhh !! Well needless to say they've decided to do 14 days antibiotics for the bacterial infection which leads him into the weekend as opposed to early this week. We have no clue about his Campath or transplant so I suppose that we will just have to see what his week brings.
It's raining outside and I seem to feel like God is depicting my mood through the weather. I sit here and see this beautiful face crawling all over the room...smiling and yelling at me and I can't help but want a break (even if it's a day) but a break for him to go outside and enjoy this beautiful weather we've been having. I don't see that happening so I guess well make the best of it...what else is there to do!? We're confined to a 10x10 white room because of Coles c diff being contagious...whoopie :/.
I don't mean to sound ungrateful, I even tell God that I can't thank him enough for giving Cole to me, but I'm so frustrated. I want my family back as a whole...is that too much to ask?! I want to be able to see my husband everyday and for him and Cole to play...I'd love for Cole to have his first swim in the pool but noooooo stupid hlh had to rear its ugly head and cole has a line in his chest and can't get wet!!! Ok enough gripping, I'm making myself angry And sad talking about it. Time to go spend quality time with my man.
-Coles Mommy
Well as many of you know Cole came into the hospital for spiking fever. Then after a day or so he was diagnosed with a bacterial infection in his blood from his new line. After a few more days, they then diagnosed him with c diff which hurts his tummy really bad :(. Well after a few days they said that his WBC (white blood count) was elevated and they thought he might be having problems with his clotting factors of his blood. They elected to give him FFP (fresh frozen plasma) last night to see if thatd help with his line issue and with his WBC. Today his line is finally working (praise Jesus). Cole, in the meantime,is on 2 antibiotics, an anti fungal and around the clock fluids. This afternoon, while changing his diaper, I noticed these (excuse my descrition) pimple looking dots on his booty. I brought it to the drs attention during rounds & he said we have to keep a very close eye on it because they could become infection, but that it looked like bacterial on the skin. Oh really doc, well you'd THINK the 2 antibiotics and the anti fungal AND his 6 meds he gets am and 6 pm that something might help!?!?!? Arghhh !! Well needless to say they've decided to do 14 days antibiotics for the bacterial infection which leads him into the weekend as opposed to early this week. We have no clue about his Campath or transplant so I suppose that we will just have to see what his week brings.
It's raining outside and I seem to feel like God is depicting my mood through the weather. I sit here and see this beautiful face crawling all over the room...smiling and yelling at me and I can't help but want a break (even if it's a day) but a break for him to go outside and enjoy this beautiful weather we've been having. I don't see that happening so I guess well make the best of it...what else is there to do!? We're confined to a 10x10 white room because of Coles c diff being contagious...whoopie :/.
I don't mean to sound ungrateful, I even tell God that I can't thank him enough for giving Cole to me, but I'm so frustrated. I want my family back as a whole...is that too much to ask?! I want to be able to see my husband everyday and for him and Cole to play...I'd love for Cole to have his first swim in the pool but noooooo stupid hlh had to rear its ugly head and cole has a line in his chest and can't get wet!!! Ok enough gripping, I'm making myself angry And sad talking about it. Time to go spend quality time with my man.
-Coles Mommy
Saturday, March 31, 2012
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
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
Wednesday, March 28, 2012
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
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
Monday, March 26, 2012
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
-Coles Mommy
Friday, March 23, 2012
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
Tuesday, March 20, 2012
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....
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!
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!
Thursday, March 8, 2012
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
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
Thursday, March 1, 2012
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
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
Thursday, February 23, 2012
Dr. Apt & Transplant Workup for this week!
Where to even start...this week has been a hectic one so I can only imagine what next week will be like having apt. after apt. day after day!
Monday, 2/20, Cole had his regular chemo apt. The dr. looked at his ears to check the progression of the ear infection he has had in the previous weeks and it was gone!!! AMEN! He got is round of VP16 and did so good this week...no throwing up!!
Mardi Gras holiday came & went...we stayed at home because crowds make me so nervous with him, but I promised him that next year if he is feeling well that we'd go (if though he didn't understand a word I said, lol.)
Wednesaday, 2/22, he had his first part of his transplant workup. We had to be at the hospital for 8am...so that meant getting up for 6 & as most of you know I'm NOT a morning person and slowly but surely Cole is taking after his Mama! When we got to the hospital the clinic was empty so we got some one on one time with the nurses and they casually talked to us about the transplant and the hospital stay. At 830 we went for his dental exam & let me just say that Cole is NOT a fan of the dentist! He only has 2 bottom teeth, but it's required to get a dental exam so it was short, sweet and to the point! Cole now uses a big boy toothbrush and he's steadily getting ok with doing it in the morning and at night. After his dental apt. we met with the Transplant Coordinator, Lisa. She was so unbelievably sweet!! She gave me some literature to read & I've gotten through a few chapters of Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients & I recommend it for all the parents of transplant patients. It breaks down the entire process from A-Z. She also prepared us for the meeting next Wedneday with Dr. Yu (the transplant dr) and said if we have any questions to write them down so we won't forget to ask them...ohhh I have manyyy!!
I just keep replaying in my mind the full weeks we have to come with apt. apt. apt. & procedure procedure procedure & man I'm mentally worn out. I can only imagine how tired my bug will be after all of this! I'm trying to keep busy so I won't sit and think about EVERYTHING and over analyze (which I'm terrible about doing). I don't my mother-in-law yesterday that I mentally knew all of this was going to happen, but to have these dates down in the books was just like a gut shot and now I'm being a worry wart. I've continuously prayed asking God to give me comfort and strength. I know everything happens in his time so I can't wait to finally have this AHA feeling that Cole will be completely fine! I just have this mental picture of a weak pale baby laying in the hospital bed just looking over at me like he just wants it to be over & that breaks my heart. I'd take this from him in a heart beat if I could. I'd take EVERTHING from him...the chemo, the procedures all the way down to the hospital stays!
I throughly believe that Cole was meant to be my child for a reason. Before all of this happened I had an OK relationship with God, but now WOW...God shows me new, powerful things everyday through Cole and I can't thank him enough. Last night, when I was praying, I literally got giddy thanking God for placing Cole in my life as my son. I just couldn't express to him enough how blessed I am. From the waking up in the morning to slobbery kisses to going to bed at night with a bed hog it is such a blessing to be his Mommy.
-Cole's Mommy
You don't raise heroes, you raise sons. And if you treat them like sons, they'll turn out to be heroes, even if it's just in your own eyes. ~Walter M. Schirra, Sr.
Monday, 2/20, Cole had his regular chemo apt. The dr. looked at his ears to check the progression of the ear infection he has had in the previous weeks and it was gone!!! AMEN! He got is round of VP16 and did so good this week...no throwing up!!
Mardi Gras holiday came & went...we stayed at home because crowds make me so nervous with him, but I promised him that next year if he is feeling well that we'd go (if though he didn't understand a word I said, lol.)
Wednesaday, 2/22, he had his first part of his transplant workup. We had to be at the hospital for 8am...so that meant getting up for 6 & as most of you know I'm NOT a morning person and slowly but surely Cole is taking after his Mama! When we got to the hospital the clinic was empty so we got some one on one time with the nurses and they casually talked to us about the transplant and the hospital stay. At 830 we went for his dental exam & let me just say that Cole is NOT a fan of the dentist! He only has 2 bottom teeth, but it's required to get a dental exam so it was short, sweet and to the point! Cole now uses a big boy toothbrush and he's steadily getting ok with doing it in the morning and at night. After his dental apt. we met with the Transplant Coordinator, Lisa. She was so unbelievably sweet!! She gave me some literature to read & I've gotten through a few chapters of Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients & I recommend it for all the parents of transplant patients. It breaks down the entire process from A-Z. She also prepared us for the meeting next Wedneday with Dr. Yu (the transplant dr) and said if we have any questions to write them down so we won't forget to ask them...ohhh I have manyyy!!
I just keep replaying in my mind the full weeks we have to come with apt. apt. apt. & procedure procedure procedure & man I'm mentally worn out. I can only imagine how tired my bug will be after all of this! I'm trying to keep busy so I won't sit and think about EVERYTHING and over analyze (which I'm terrible about doing). I don't my mother-in-law yesterday that I mentally knew all of this was going to happen, but to have these dates down in the books was just like a gut shot and now I'm being a worry wart. I've continuously prayed asking God to give me comfort and strength. I know everything happens in his time so I can't wait to finally have this AHA feeling that Cole will be completely fine! I just have this mental picture of a weak pale baby laying in the hospital bed just looking over at me like he just wants it to be over & that breaks my heart. I'd take this from him in a heart beat if I could. I'd take EVERTHING from him...the chemo, the procedures all the way down to the hospital stays!
I throughly believe that Cole was meant to be my child for a reason. Before all of this happened I had an OK relationship with God, but now WOW...God shows me new, powerful things everyday through Cole and I can't thank him enough. Last night, when I was praying, I literally got giddy thanking God for placing Cole in my life as my son. I just couldn't express to him enough how blessed I am. From the waking up in the morning to slobbery kisses to going to bed at night with a bed hog it is such a blessing to be his Mommy.
-Cole's Mommy
You don't raise heroes, you raise sons. And if you treat them like sons, they'll turn out to be heroes, even if it's just in your own eyes. ~Walter M. Schirra, Sr.
Tuesday, February 14, 2012
The Transplant Call....
On February 12th we celebrated Cole bugs first birthday! We had such a great turnout & Cole had a blast!! I'm so happy we did it when we did because I got a phone call yesterday (2/13) with tonssss of dates to look forward to for the upcoming weeks....
Lisa, the transplant coordinator, called me yesterday and told me that Cole's date of his transplant has been set for April 8th. I've been daily telling myself that Cole's fine and I'm mentally ready for this transplant, but that phone call was like a gut shot! I think the rest of our conversation is a fog to me...ahhh I just kept thinking why Cole...why! I'd stopped saying & wondering that for awhile but now the thought it back...I just don't understand and I honestly don't think I ever will.
She said that he's going to have to have NUMEROUS blood tests plus a psychology exam, dietician meeting, exam by physical therapy and occupational therapy and SOOOO much more...
The list of things I wrote down have overwhelmed me so I can only guess how they're going to make my little man feel! She also said that a week before his transplant he'll have to take a medicine called Campath. She that that this medicine is used for a marrow suppresent. Also, that after he's going to have to wear a mask everywhere he goes...YIKES...i dont even know what to think about that! I've tried time and time again to put a mask on him, but he ends up throwing up every time from crying so much!
Dr. Prasad has told me that I need to expect moodiness, sores in his mouth, no appetite and restlessness....I just pray it isn't as bad as I'm imagining!
I know that I say this so much, but I can't wrap my head around it. I just look at Cole & cannot for the life of me understand how he's sick. I've even contimplated that possibly I did something wrong while I was pregnant, but the drs. have assured me that I didn't, but I still second guess them too! Cole is so lively and man is he a sweetheart (ALWAYS a smile on that plump little face!) so I guess that's another reason this is so hard to stomach.
God & I had a long talk last night and numerous times today to just comfort me through this and keep him strong, but me too. I want to stay everyday with Cole in the hospital and I pray with all my might that I don't get sick so I'd have to leave him. God knows how much I love Cole. I've never ever loved something or someone like I love him and I just pray that God doesn't take Cole from me. There I said it...that's my worry...I don't want him gone. I want, I need him. I want to be that parent putting up with the attitude from their 16 year old son. I want to meet his first girlfriend, I want to bring him to his first day of school & cry because my baby will be growing up. I just pray that we will get to experience all of that!!!
We've come so far that I just can't imagine that he would back track! He's just blazing through his VP16 & everything else so I'm just staying positive that he will blaze through all of this that is to come!!!
-Cole's Mommy
Isaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand
Lisa, the transplant coordinator, called me yesterday and told me that Cole's date of his transplant has been set for April 8th. I've been daily telling myself that Cole's fine and I'm mentally ready for this transplant, but that phone call was like a gut shot! I think the rest of our conversation is a fog to me...ahhh I just kept thinking why Cole...why! I'd stopped saying & wondering that for awhile but now the thought it back...I just don't understand and I honestly don't think I ever will.
She said that he's going to have to have NUMEROUS blood tests plus a psychology exam, dietician meeting, exam by physical therapy and occupational therapy and SOOOO much more...
The list of things I wrote down have overwhelmed me so I can only guess how they're going to make my little man feel! She also said that a week before his transplant he'll have to take a medicine called Campath. She that that this medicine is used for a marrow suppresent. Also, that after he's going to have to wear a mask everywhere he goes...YIKES...i dont even know what to think about that! I've tried time and time again to put a mask on him, but he ends up throwing up every time from crying so much!
Dr. Prasad has told me that I need to expect moodiness, sores in his mouth, no appetite and restlessness....I just pray it isn't as bad as I'm imagining!
I know that I say this so much, but I can't wrap my head around it. I just look at Cole & cannot for the life of me understand how he's sick. I've even contimplated that possibly I did something wrong while I was pregnant, but the drs. have assured me that I didn't, but I still second guess them too! Cole is so lively and man is he a sweetheart (ALWAYS a smile on that plump little face!) so I guess that's another reason this is so hard to stomach.
God & I had a long talk last night and numerous times today to just comfort me through this and keep him strong, but me too. I want to stay everyday with Cole in the hospital and I pray with all my might that I don't get sick so I'd have to leave him. God knows how much I love Cole. I've never ever loved something or someone like I love him and I just pray that God doesn't take Cole from me. There I said it...that's my worry...I don't want him gone. I want, I need him. I want to be that parent putting up with the attitude from their 16 year old son. I want to meet his first girlfriend, I want to bring him to his first day of school & cry because my baby will be growing up. I just pray that we will get to experience all of that!!!
We've come so far that I just can't imagine that he would back track! He's just blazing through his VP16 & everything else so I'm just staying positive that he will blaze through all of this that is to come!!!
-Cole's Mommy
Isaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand
Thursday, February 9, 2012
February 7, 2012 Dr. Apt.
So I want to start off by saying...WHERE HAS MY BABY GONE?!?! He weighs 22.08 lb. & is 27 1/4 in. long! That's far from being my 8 lb. 12 oz. baby!
First I want to let everybody know about an enlightening moment that happened to me personally at Cole's apt. on 2/7. I met a lady (whom I'll refer to as an angel on earth because how could she not be...I bet you'll agree with me once you read this story) & her daughter (who is so strong...stronger than anyone I know!). This little girl is 5 years old now and is gorgeous as can be. When she was born she was born with a genetic disease ( I can't recall the name, but just know that it is 100% fatal). Her mom was the sweetest thing because her daughter had just gone through a transplant so she was giving me the run down on what to expect. She said that when her daughter was born she had a thumb that wasn't totally formed. Her doctor recommended to check her for a few diseases that can cause that. She said she can remember the day that her doctor walked in teary eyed and said I'm sorry your daughter is going to die soon. She said she just sat in shock for what felt like years. One thing lead to another and they went to Children's Hospital in New Orleans under the direction of Dr. Yu (which will be Cole's transplant dr.). She said her daughter started on chemo and had to be masked anywhere she went (which wasn't many places at all). She said just a week prior to her speaking with me...her daughter was able to go out without a mask...she said their first trip was to McDonalds to go in and have a meal. She was telling me that she is surprising her daughter with a trip to Chuckie Cheese this weekend...I bet that little girl is going to have the time of her life! She was telling me that the transplant that her daughter just went through was just a bandaid for her disease. Without hesitation she said, "But you know what if it gives us 2-3 more years then that's ok!" WOW....I sat there just in awe of this lady & I am on a daily basis praying for them. They both have such strength. Strength I know only our savior can bring. I know Cole is sick...but Cole's disease can be fixed....her's can't but they just look on the bright side of things and live each day to the fullest. I refer to this lady as an Angel because she was blessed with a beautiful baby girl who might not make it another year, but she stays with her daily and like I said she makes the best of each day! When I feel down & out I just remind myself that YES IT CAN ALWAYS ALWAYS ALWAYS be worse! I really hope that next time Cole has a dr. apt that we can see them again...I'd love to speak more with her because she has blessed me and she doesn't even realise it!
Cole's dr. apt. went well. Dr. Prasad asked when we were going to do his 1st birthday party (THIS SUNDAY>WOW WHERE HAS THE TIME GONE?!)...when I told her she said to expect a call from the transplant coordinator to discuss when to come in to start setting everything up. She said he will have to come in daily for awhile to run various tests...but that's ok we can do it!
He had to get another round of Rocephin while we were there for a lingering ear infection and poor thing threw up twice :( It breaks my heart to see him sick, but as soon as he would throw up he'd smile ear to ear at me...gosh he's so strong!
Cole was placed in our life, but especially mine for a reason. I believe with all my heart that God knew what he was doing. Before Cole came into my life my relationship with God was back & forth, but now...WOW I don't even know what to say....I just can't describe how strong it has become. Cole has done more in his 10 mo. of life than I have in 22 years & man it feels good to know that I'm his mommy!
-Cole's Mommy
Hebrews 13:2 “Do not forget to entertain strangers, for by so doing some people have entertained angels without knowing it.”
First I want to let everybody know about an enlightening moment that happened to me personally at Cole's apt. on 2/7. I met a lady (whom I'll refer to as an angel on earth because how could she not be...I bet you'll agree with me once you read this story) & her daughter (who is so strong...stronger than anyone I know!). This little girl is 5 years old now and is gorgeous as can be. When she was born she was born with a genetic disease ( I can't recall the name, but just know that it is 100% fatal). Her mom was the sweetest thing because her daughter had just gone through a transplant so she was giving me the run down on what to expect. She said that when her daughter was born she had a thumb that wasn't totally formed. Her doctor recommended to check her for a few diseases that can cause that. She said she can remember the day that her doctor walked in teary eyed and said I'm sorry your daughter is going to die soon. She said she just sat in shock for what felt like years. One thing lead to another and they went to Children's Hospital in New Orleans under the direction of Dr. Yu (which will be Cole's transplant dr.). She said her daughter started on chemo and had to be masked anywhere she went (which wasn't many places at all). She said just a week prior to her speaking with me...her daughter was able to go out without a mask...she said their first trip was to McDonalds to go in and have a meal. She was telling me that she is surprising her daughter with a trip to Chuckie Cheese this weekend...I bet that little girl is going to have the time of her life! She was telling me that the transplant that her daughter just went through was just a bandaid for her disease. Without hesitation she said, "But you know what if it gives us 2-3 more years then that's ok!" WOW....I sat there just in awe of this lady & I am on a daily basis praying for them. They both have such strength. Strength I know only our savior can bring. I know Cole is sick...but Cole's disease can be fixed....her's can't but they just look on the bright side of things and live each day to the fullest. I refer to this lady as an Angel because she was blessed with a beautiful baby girl who might not make it another year, but she stays with her daily and like I said she makes the best of each day! When I feel down & out I just remind myself that YES IT CAN ALWAYS ALWAYS ALWAYS be worse! I really hope that next time Cole has a dr. apt that we can see them again...I'd love to speak more with her because she has blessed me and she doesn't even realise it!
Cole's dr. apt. went well. Dr. Prasad asked when we were going to do his 1st birthday party (THIS SUNDAY>WOW WHERE HAS THE TIME GONE?!)...when I told her she said to expect a call from the transplant coordinator to discuss when to come in to start setting everything up. She said he will have to come in daily for awhile to run various tests...but that's ok we can do it!
He had to get another round of Rocephin while we were there for a lingering ear infection and poor thing threw up twice :( It breaks my heart to see him sick, but as soon as he would throw up he'd smile ear to ear at me...gosh he's so strong!
Cole was placed in our life, but especially mine for a reason. I believe with all my heart that God knew what he was doing. Before Cole came into my life my relationship with God was back & forth, but now...WOW I don't even know what to say....I just can't describe how strong it has become. Cole has done more in his 10 mo. of life than I have in 22 years & man it feels good to know that I'm his mommy!
-Cole's Mommy
Hebrews 13:2 “Do not forget to entertain strangers, for by so doing some people have entertained angels without knowing it.”
Thursday, January 26, 2012
Dr. Apt. January 24, 2012
These dr. apts. seem never ending...do any of you histio mommys feel the same way?? We had to be at the drs office at 8:45am and they didn't even see us until 11 :/...wow waiting that long in a waiting room full of cancer striken families and children definetly makes you think and take things into perspective. Even though Cole has such a "rare" disease (which I don't believe it's as rare as they think...I know so many families taken by this awful disease) there are kids in that hemonc clinic who are way worse off, but ALWAYS have such a big smile on their face....it's uplifting honestly. Well when we were finally seen they did his vitals & my big man weighs 21.6 lb. now...WOW! Such a chunker! His BP of course was high (SHOCKER) so they debated uping his BP medicine, which they didn't thankfully. His levels came back wonderfully (YAY!!) and he didn't have to have any fluids this week :). He does, though, have some type of bacterial infection and they've put him on medicine for that and poor thing has an ear infection too and they put him on Omnicef for that as well. Gosh...ya know it's so crazy to think of how many medicines that he takes daily. We've come from throwing up after every single medine to now he takes it like a trooper! I thought me having to take 3 medicines daily was bad, but now he's going on 14 medicines (some every other day though). They had to up his chemo because of him size now & so its taking him more days now to get over this nastiness from it. The dr. also told us to go ahead and have Cole's birthday party (if we wanted to & of course we do) sometime in February (even though his birthday isn't until April 6th) because he will be admitted into the hospital first week of March to start his transplant. Typing this just now gave me chills....to think my little baby (at that time 11 mo old) will be undergoing such a gutwrenching thing makes this mommy worry. I know he's done so well so far, but what if...I try to stay so positive, but I worry so much. I stay strong for him, but man this sucks to say the least. Why Cole...why can't he be normal and be able to take a bath and be able to crawl around without an ace bandage around him....why...I know you're not suppose to question God but I just wish...ya know? I'm SO thankful to have caught this in time and to actually still have Cole by my side daily so ya know if this is what we have to do to be able to keep him with us then so be it! Well back to the birthday party...I hope we have a great turnout so that little man can have some fun before he's stuck in a hospital room for awhile! It'll be a Mickey Mouse 1st Birthday February 12th from 1-4 at his KK's house...if you'd like to come please let me know :)! Well I hope & pray that everything goes well for his transplant...Dr. Prasad said that best case senerio he'll be in the hospital 6 weeks then at the Hope Lodge in New Orleans for 2 months...we'll have to stay at the Hope Lodge because we live further than 20 min. from the hospital. I hope that we feel comfortable there....I'm getting homesick just thinking about being away from everybody that long! We'll be spending Coles Birthday, Chriss Birthday & My Birthday in the hospital...whoo hoo go 2012 (sarcastically, lol). Well little mans getting ready for a nap and clothes have to be washed so I better get going...until next time!
-Cole's Mommy
-Cole's Mommy
Friday, January 20, 2012
Hemophagocytic Lymphohistiocytosis (HLH)
Where to begin...
Let's start all the way back at the beginning...
Justin "Cole" Alison was born on April 6, 2011. 8 lb. 12 oz. of pure perfection. As soon as I saw him, I was in tears...he was perfect from day 1. We finally got to come home 3 days after he was born & everything was wonderful...for the time being.
When Cole was 5 weeks old (May 2011), he started with a very bad fever on a Saturday. I called his pediatrician and she said to give him tylenol and to keep an eye on him. His fever kept spiking, up to 104 at times, so I called her the next day and she said that Monday to bring him in first thing in the morning.
On first evaluation of him, she said he had a terrible ear infection. She put him on amoxicillian and a pain ear drop. After a few more days of a terrible fever, he started getting a horrible rash everywhere. It started on his face then moved everywhere (it's actually just going away). I brought him into the ER (his pediatricians orders) & the ER dr. said that he was having an allergic reaction to Amoxicillian and put him on Zythromax.
A few days passed & his fever & rash persisted. I brought him back to the same ER (his pediatricians orders) & she said to tell them that some type of bloodwork NEEDED to be done. We saw the same ER dr. as before and his words were "It's GDing stupid to have any type of bloodwork done on a baby this young. Go home his fever will go away once his antibiotic takes affect." We left that night thinking..."Ok he's a dr. he knows what he's talking about".
The following day, I still had a gut feeling that something was wrong. My mother-in-law found another pediatrician in Slidell, LA that would see Cole ASAP. I remember walking into the drs office and then it sort of became a blur. We went to the back with the nurse telling us something was wrong because he's too little for this. When Dr. Braudt finally saw him, he immediately told us we were going to be directly admitted into Ochsner Hospital in Slidell, LA. He was worried about things like Kawasaki Disease and Leukemia.
We went directly to the hospital, where Cole was poked here and there so many times that I lost count. I was worried to death because we just didn't know (& that became such a familiar feeling until he was finally diagnosed). After his test results came back, they stated that Cole had adenovirus & hepatitis. They started him on so many medicines that I can't even recall them.
After a week and a half of treatment and various drs on his case, they still had no answer for why his body wasn't totally responding. An infectious disease dr came in on his case and finally told me about 11 p.m. one night that he had no answer. That our best bet was to transfer to Children's Hospital in New Orleans, LA. I agreed almost instantly and the following day we were in an ambulance with my family behind us to be admitted into Children's Hospital.
Our stay at Children's Hospital was more than a blur. I barely remember dr's coming in and out. I just kept thinking why him...why my child...what did we do to deserve this. I wanted answers and I wanted them now, but it seemed like I was never going to get any. People would call daily to ask for updates and all I could say was I don't know...they don't know.
Dr. Hescock was involved on Cole's case. He then got a rheumatologist involved to test for Kawasaki, Lupus, etc. When all those tests came back negative they finally turned to the Hemotologist, Dr. Prasad (who is an angel on earth), to help us. They went back and forth for awhile, but when Cole was around 10 weeks they finally said "Yes, HLH."
Even though I was so happy to finally have an answer, I don't think that was the answer I wanted to truly hear...I don't think that was the answer that I would hear. I just knew this was a fluke accident, that nothing was wrong that he'd be fine, but my child was sick. Sick with a bad illness that could result in Death if not treated. Death...my child...Cole...wow...I was scared more than I have ever been in my entire life.
I'm only 21 years old and I have been married 1 year this past November and my first child...our first child...our pride and joy...was sick.
The call we got that day from Dr. Prasad came as a huge shock. I remember just saying "Really, are you sure?" & she just kept saying it's going to be ok. I actually hung up with her at first because I was in shock, but called her back to ask what was going on...I was lost. I called my husband hysterically. He rushed home to find me in a daze. Before I knew it all of our family was over. I stayed in our bedroom most of the time just thinking Why us...Why Cole...Why does he deserve here...Why??!!?? I asked myself that more than I can count.
At 12 weeks, Cole went into Children's at 5:30AM to finally get his broviac line. This was heaven sent because I was beyond tired of the sticks...I hate seeing him cry & having to hold him down to stick him. Finally a few days later chemotherapy was started. We've been doing chemo now for months and Cole's levels each week have been outstanding.
We were finally told about a week ago that his lifesaving Bone Marrow Transplant will take place in February or March. I'm mentally and physically ready for this & I know that Cole is too.
Throughout all of this our relationship with God has become so strong. He has given me the strength that I need to withstand life daily. People don't understand how hard it is to have a sick 9 month old. He constantly is taking medicines (12 medicines daily) & it's a non stop thing. He constantly shows me how to be strong though & if a little baby can withstand this then that's ok I can do whatever I'm faced with too!
"Being Strong Does Not Mean Avoiding the Truth. It Means Accepting It, Learning About It, & Dealing With It Head On"
-Cole's Mommy
Let's start all the way back at the beginning...
Justin "Cole" Alison was born on April 6, 2011. 8 lb. 12 oz. of pure perfection. As soon as I saw him, I was in tears...he was perfect from day 1. We finally got to come home 3 days after he was born & everything was wonderful...for the time being.
When Cole was 5 weeks old (May 2011), he started with a very bad fever on a Saturday. I called his pediatrician and she said to give him tylenol and to keep an eye on him. His fever kept spiking, up to 104 at times, so I called her the next day and she said that Monday to bring him in first thing in the morning.
On first evaluation of him, she said he had a terrible ear infection. She put him on amoxicillian and a pain ear drop. After a few more days of a terrible fever, he started getting a horrible rash everywhere. It started on his face then moved everywhere (it's actually just going away). I brought him into the ER (his pediatricians orders) & the ER dr. said that he was having an allergic reaction to Amoxicillian and put him on Zythromax.
A few days passed & his fever & rash persisted. I brought him back to the same ER (his pediatricians orders) & she said to tell them that some type of bloodwork NEEDED to be done. We saw the same ER dr. as before and his words were "It's GDing stupid to have any type of bloodwork done on a baby this young. Go home his fever will go away once his antibiotic takes affect." We left that night thinking..."Ok he's a dr. he knows what he's talking about".
The following day, I still had a gut feeling that something was wrong. My mother-in-law found another pediatrician in Slidell, LA that would see Cole ASAP. I remember walking into the drs office and then it sort of became a blur. We went to the back with the nurse telling us something was wrong because he's too little for this. When Dr. Braudt finally saw him, he immediately told us we were going to be directly admitted into Ochsner Hospital in Slidell, LA. He was worried about things like Kawasaki Disease and Leukemia.
We went directly to the hospital, where Cole was poked here and there so many times that I lost count. I was worried to death because we just didn't know (& that became such a familiar feeling until he was finally diagnosed). After his test results came back, they stated that Cole had adenovirus & hepatitis. They started him on so many medicines that I can't even recall them.
After a week and a half of treatment and various drs on his case, they still had no answer for why his body wasn't totally responding. An infectious disease dr came in on his case and finally told me about 11 p.m. one night that he had no answer. That our best bet was to transfer to Children's Hospital in New Orleans, LA. I agreed almost instantly and the following day we were in an ambulance with my family behind us to be admitted into Children's Hospital.
Our stay at Children's Hospital was more than a blur. I barely remember dr's coming in and out. I just kept thinking why him...why my child...what did we do to deserve this. I wanted answers and I wanted them now, but it seemed like I was never going to get any. People would call daily to ask for updates and all I could say was I don't know...they don't know.
Dr. Hescock was involved on Cole's case. He then got a rheumatologist involved to test for Kawasaki, Lupus, etc. When all those tests came back negative they finally turned to the Hemotologist, Dr. Prasad (who is an angel on earth), to help us. They went back and forth for awhile, but when Cole was around 10 weeks they finally said "Yes, HLH."
Even though I was so happy to finally have an answer, I don't think that was the answer I wanted to truly hear...I don't think that was the answer that I would hear. I just knew this was a fluke accident, that nothing was wrong that he'd be fine, but my child was sick. Sick with a bad illness that could result in Death if not treated. Death...my child...Cole...wow...I was scared more than I have ever been in my entire life.
I'm only 21 years old and I have been married 1 year this past November and my first child...our first child...our pride and joy...was sick.
The call we got that day from Dr. Prasad came as a huge shock. I remember just saying "Really, are you sure?" & she just kept saying it's going to be ok. I actually hung up with her at first because I was in shock, but called her back to ask what was going on...I was lost. I called my husband hysterically. He rushed home to find me in a daze. Before I knew it all of our family was over. I stayed in our bedroom most of the time just thinking Why us...Why Cole...Why does he deserve here...Why??!!?? I asked myself that more than I can count.
At 12 weeks, Cole went into Children's at 5:30AM to finally get his broviac line. This was heaven sent because I was beyond tired of the sticks...I hate seeing him cry & having to hold him down to stick him. Finally a few days later chemotherapy was started. We've been doing chemo now for months and Cole's levels each week have been outstanding.
We were finally told about a week ago that his lifesaving Bone Marrow Transplant will take place in February or March. I'm mentally and physically ready for this & I know that Cole is too.
Throughout all of this our relationship with God has become so strong. He has given me the strength that I need to withstand life daily. People don't understand how hard it is to have a sick 9 month old. He constantly is taking medicines (12 medicines daily) & it's a non stop thing. He constantly shows me how to be strong though & if a little baby can withstand this then that's ok I can do whatever I'm faced with too!
"Being Strong Does Not Mean Avoiding the Truth. It Means Accepting It, Learning About It, & Dealing With It Head On"
-Cole's Mommy
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