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
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