frusterated with....

the fact that our CF clinic completly SUCKS! I called vince's therapist this morning because yesterday he refused breakfast and we fought him to eat dinner and was only able to get less than half of a yogurt in him..then last night when we gave the oral med he puked EVERYWHERE!!!! luckily i took my shirt off,because it seriously went all over the place and it was my favorite shirt! vince is having more than one side effect from this new med..im not sure if it said rash but his face and neck have some hives,he must have an upset stomach since he is refusing MOST food,he has MAJOR stinky diahrea..and just a few days ago it was extremly hard! each time we give the med he either spits it out and gags, or pukes it all back out..he will take it in about 2 ounces of pop but that is the ONLY way! the nurse suggested i do tiny bits in the back of his throat even if it takes 10 minutes..do you think it worked? of course not he spit ALL of it EACH time!! so i measured the dose again and put it in pop and he barely took it this time! the therapist says to offer meals and if then will not eat or does eat much to give a bottle..the nurse says oh give him yogurt for probiotics..what did she not understand about HE WON'T EAT? so i got drinkable yogurt,ya think he drinks it?? NOPE! i looked for the culturelle probiotic at walmart and they were out! im just so frusterated..i rely on my CF momma friends to get me through..i'm not sure how many you actually care but i NEED people to vent to and this really is my only way!!!!!

seriously?

ok so i did my job by reading more on the cephalexin for vince's sake..on ithink it ws drugs.com it says not to use if you are allergic to penicillin..we have told vince's doctor there is a chance he is before and that we would prefer him not be given this as he has enough issues going on..so how much arethese two meds related? he seems to be fine and he has had 3 doses so far..his poo is becoming aqishy and he does not want to eat real food only gummy bears and a few cherrios..so feeding him yogurt is not going to work..so i am gonna have to try yogurt juice..also how do you tell the differance between diareah and C-Diff? especially when the child can not tell you how they feel? also does anyone know what the liquid probiotics smell or taste like? vince is so picky and AFRAID of anything that goes near his mouth!

CEPHALEXIN

ok so vince was started on cephalexin and is being started on his TOBI a day early..he grew rare psedamonous..meaning not much..and staph..few..which is more than his normal growth..he really does not like the new med its a thick orange smelly like cat pee med! the tobi alone is a 20 min treatment! and the new cephalexin can cause C-Diff..from what i have heard it's a nasty intestine infection that hard to kick out! and comes back very easily!!! it can also cause nausea..great vince already doesn't enjoy eating! yogurt diet for him to give him the good bacteria his tummy needs back..this is just a VERY quick short update..please keep him and me in your thoughts..this many meds is getting confusing not too much to handle just alot to remember and to take on..by the way he looks so adorable in the ducky quilt my sister had made for him with his name tonight! thanks bryttny! feel better my sweet baby love!

CHRISTMAS!!!!!!

ok so christmas is almost here..we have both good and bad news...good is we are home..vince has 2 new teeth which makes 8 in his mouth..when we did an "emergency" visit to the CF center monday xrays and cultures were taken..xray was GREAT meaning no pnemonia! this is one of his longest periods of no infection! wahoo! however the culture was "suposed" to be in today and its STILL growing,which is no good..they said its his normal bacteria so nothing new yet..but since his cough is lingering around he may be treated..they also asked how SOON he will start TOBI-which is wednesday the 29th. so im assuming he is growing a good size amount of psedamonous! he is doing pretty well..got hurt today which isnt anything unusual but i did get more worried this time! he is doing great tonight and acting himself..CRAZY!!!!!!! he also helped cut out the cookies and even frost them..well he played in the frosting :) and the flour :) he has now eaten fairly well 2 days in a row..yesterday for the 1st time i can remember since he was about 10 months old..he ate 2 WHOLE meals..he had strawberry yogurt for breakfast and even ate all the berries..normally he would spit these out and even gag sometimes..then he has sweet potatoes for dinner!!! so everyone have a good night and merry christmas! will update after monday when we get HOPEFULLY a final culture result!

good/bad news

ok so as of right now it is still a head cold..his lungs look AND sound perfecto! but because of the cough we are continuing with TOBI starting wednesday following christmas as planned. another throat culture was taken to be sure nothing new is growing. if he continues coughing after this round of TOBI and the holidays are through they are thinking of admitting him just to clear things out. a small positive he gained almost 2 ounces in 2 weeks. he is 24 pounds 8.8 ounces. and still 31 inches. but we were just there less than 2 weeks ago. the main pulmonologist says there is no reason to have him on the bottle the way he looks..he said vinces weight is wonderful. also on the way to the clinic my marketing teacher called. i have done SO much work for the 1st quarter and extra credit that i have an "A" and do not need to do anymore extra work since i started late in the semester. i only have one other class to get caught up on and finish before january and then my other classes start and i can not wait! i hope all my teachers are as great as this guy!

Torn between...

the fact that vince was starting to finally eat more food along with new food when i decreased his bottle intake. but i dietician was not happy and wants him on a bottle until he's 2...i did NOT like this idea..and now im really hating it..now that he knows his bottles are back he wont hardley eat! i try and try and it doesnt work..its his favorite foods at his normal times..and still no luck..its just cause hes knows the bottle is back...he will not drink pediasure any other way than in the bottle..i have started adding oil and cereal to his food in hopes to get his weight back on..he is down 8 ounces...i mean i know the pediasure is helping him with calories,but no bottle is helping his feeding issue!!!! please give your input on this topic through facebook!! thank you!

good/bad

ok so things are going pretty well...now that vince's meds have been increased im seeing some relief..we will be picking up the inhaler and aerochamber today..well when vince wakes from his nap!

**today i am feeling both up and down...down because as most know the death of my mom when i was just 13..i am trying to be happy and such but this week is gonna be a rough one...i am VERY excited about the fact that i was accepted into school and i should receive a call tomorrow to set up delivery of my computer and printer..i will also receive an account with office depot to order printer paper,ink,ect.

**tomorrow IF school is not canceled my sister,Bryttny,and I will be delivering balloons and cupcakes to our baby sister..only she's not so baby anymore! she will be 7 tomorrow! the timehas gone by sooo fast! i still remember when she was an itty bitty baby,her 1st christmas,easter,and 4th of july...she's growing into a very pretty little girl...and does wonders with little vince...i think that is all for today...so i will be cleaning and rearranging furniture to make room for everything!

update-december

ok so we went to vince's appt..he isnt doing TOO bad..he is not gaining weight in fact he lost a few ounces...he is at 24 pounds 7 ounces and 31 and 1/2 inches tall...his eating is getting better..today he ate about 1/2 a strawberry PUDDING!!!! this was a 1st he has ALWAYS gagged on it..so proud :) he did in fact get his handicap sticker which is good until april 2011..if his allergies bother his asthma in the spring he will get another..he was given a ventalin inhaler..its from what i understand a stronger form of albuterol put into an inhaler..

***today i called my step mom (my dad had told me she wanted to talk to me) so i called and she was more or less worried about me..this year has been hard..seeing and reading the hardships of CF and vince's condition both worsening and getting better both in different areas..she told me things i already knew but it felt GREAT to hear come from someones else mouth other than my own..that i have a BEAUTIFUL little boy...and a GREAAAT man :) which yes i knew,but like i said i have had a rough year and the holidays are never easy..she told me she wished i could be happy again how i was before all of this..i wish the same and i am gonna try to keep my head up and stay positive!!!tonight they invited me to dinner..im just hoping sam gets back from fishing in time to do so...well thats all for now!!!

for yleana

yleana,
i just wanted to say sorry that you couldn't read my blog the other day...i will try to make it so you can see from now on!!!! i hope you have a good birthday this year! and i hope you will come see me soon! vince has been a bit sicker and can not go out in the cold much right now! so i love you lots and hope to see you sometime soon!!!!!!!!!!! here's a kiss "muah"

this posting is not for kids :)

ok,so i was told my last posting made a few people "mad"...i really didnt mean anything negative about it..and i had no idea a 6 year old (my sister) was reading this...i didnt even know my aunt knew this profile existed!
***LISA*** like i said i didnt know yleana was reading this..i will try to keep it happy and fun..but please remember this is to update on vince and things may not always be pleasent,such as his asthma attack the other day..if i think its too much i will put a warning type lable on it :) i hope you understand..please tell ylea i love her!

***TARA,DENISE,BRYTTNY*** honestly im not sure why tara and denise you were upset by it,but i am sorry..i have liked coming over recently and tara i like seeing our boys play together..bryttny..you also said this year has been hard for you..and i am VERY thankful for you coming with us to toledo and everything!

***anyone else*** i didnt know that this would offend everyone saying about my mom dying the same day my sister was born...it was NOT yleana's fault..my mom was VERY sick..pnemonia,strep pnemonia,influenza a,meningitis,brain hemorage,and an anurysm...my sister was saved,and for that i am thankful..i love her so much...yes i miss my mom...this time of year is very hard! but i DO NOT blame her at all! i only meant in my previous post that yes it did in fact happen the same day,but nothing about the fault..so i hope everyone understands..for now that is all!!!!!!!!!!!

crap!

well..yesterday (monday) vince had an asthma attack just from my back door to the car,the cold caused him trouble..then today he had a major one in the car as i was pulling up to a store..his face turned white,his eyes,and mouth were red..and he had passed out or instanley fallen asleep from the coughing/choking/gasping..because he had just been awake..i always check on him through my mirror..and now im up and cant get this outta my head!!! here is what his breathing meds normally are,and then what they will be...

***NORAML***

9-10AM..albuterol

5pm..pulmicort

9pm...albuterol/pulmozyme(not mixed)

***NOW***

9AM..albuterol/pulmicort

1pm..albuterol

5pm..albuterol/pumozyme

9pm..albuterol/pumicort

and this is just until thursday when we go to clinic..he will be getting a handicap sticker for our cars..although more mine..today was extremly scary..i was told i was lucky he came out of so easily..seriously a 1year old shouldnt have to deal with this!

and on top of all this..in 1 week my baby sister will be 7..and it will be 7 years since i lost my mommy...then 11 days after that christmas..and then in another 11 days i will be 21...

so ya..i could really use some love and support through this season..and vince could use some prayers and some open airways...please keep us all remembered this season!!!!

vince also despite everything i felt the need to get pictures of him playing in the snow for his 1st time!!!!

the grinch WONT steal our xmas!

ok..so it seems we will be having xmas at home..THANKFULLY! it is now 4 months since vince was admitted..not our record..but definitly doing great..i love what the TOBI has done for him..he is progressing nicely in speech/occupational..and im glad i chose to get him help..we ave decided as a group now is a good ime o kick out bottles..vince will NOT drink pediasure other than in a bottle..sooo he will still get his bedtime bottle but none during the morning or day..and he has NO problems drinking from his sippy :) and since his favorite "real" food is yogurt he will be getting calcium there..and i plan to add oil to his foods for calories..and start him on yogurt juice for calcium...im sure his weight will be easy to maintain,as we have not had many issues with it since he was started on enzymes and other meds..today he saw santa,played with markers,and ate TONS...off to bed...

heartbreaking

ok sooo...last night i heard something went wrong with a friends CF test..and looked about every 5 minutes to her page hoping for an update..but nothing came until this afternoon..saying how this sweet inncocent 4 year old cutie may need a lung transplant...seriously? how can someone be healthy for part of their life then all of a sudden slide down hill..it's not fair..there's not been a moment today where i thought today how is vince going to progress? will he be ok? am i doing everything possible? he means so much to me..i just hate seeing a 3 year almost 4 year little girl have to come home early from her make a wish trip because shes sick and in pain..its a wish..cant CF take a 4 day vacation? and a 4 year old,cant she go to school and play with her friends? and a 7 year old,why did CF take him from his 2 younger brothers...vince is my life..and tonight i honestly can not take my mind off of these 4..because vince is included...i love him to pieces and just hope to be doing everything right

update-november

ok to we went to the dr today for vinces CF check-up...his o2 was down a bit at 98..which is still good but he has only ever read that low after he gets outta surgery..his weight was also down a little by 4 ounces..but since hes still at 55% the drs are not concerened...as for the puking,we are to mix 1/2 pediasure 1/2 milk...we were given chewable vitamins,we are to crush and give him 1/2 a day in applesauce...his little boy private parts were very red and "raw" looking..we are to give him a very warm bath every day with mild soap,and use aquaphor,if it spreads or does not get better he will be having testing done..the doctors were also ok with the fact the i have decreased his enzymes..so relieved...he got his 2nd dose of the flu vaccine and got his 1st hepitits A vaccine..over all things are good,just a bit worried about the rash..could be STAPH not MRSA..we were told staph is on everyones skin but when something such as a diaper is rubbing the area it can become infected but at this point does not look serious..also i got a list of all the times hes been to the doctor and his diagnosis'..it says CF,CFRD..and something else-i dont have the paper in front of me...im wondering why i was never told about CFRD and if maybe his blood showed high sugar levals at some point..this is so far my big question for next month...i will be mentioning this to sam as soon as he walks in the door...

UPDATE

ok so here's the deal...on monday at speech therapy we noticed vince was having a hard time breathing,and since we knew he was growing bacteria and that he has asthma we chose to call the doctor and because his poo was not regulated yet...so we went up tuesday for xrays on his chest and abdomen..he did infact have extra mucous in his lungs but it is not pnemonia..he also has extra poo in his stomach,but as long as we keep up with miralax and that he goes each day he should be ok...i also FINALLY got the doctors listen to me and he will be started on tobi this coming wednesday..he will go to the clinic to be sure he doesnt have trouble breathing...then i chose to mention a rash he has on the backside of his hip where his diaper sits,and they say it could be the start of MRSA..but yet NEVER tested him..so i decided i was NOT going to let this go..i took him to the local urgent care at 1pm when they opened the following day..they said it looks to be an irritation of the diaper and told me i could cover it with a band aid or gauze at night and also gave me a prescription cream..the 1st night of doing this and the rash was almost gone..so now we are just trying to get caught up on some things at home..
***DONT FORGET TO CHECK OUT MY TEAM VINCE ALBUM AND SUPPORT THE CF FOUNDATION WITH A PURCHASE...i will also be selling pumpkin rolls WHOLE-$10 and HALF-$5....

new diagnosis

well we went to our monthly visist this tuesday..vince's cold was mostly gone,although they did a culture to be sure there is no bacteria since he is still having trouble breathing..although from the info i told the and my concern they started him on an inhaled steroid called pulmicort..it seems to be helping after just 2 treatments..he is still a bit stuffy but much better..he was also still constipated so they upped the miralax to 2x a day and 1/4 - 1/2 cup of plum or prune juice each day..so much to remember..so the doctors do infact believe that vince has asthma..he gained a tiny bit of weight..he is up to 24 pounds and 1 ounce..and 30 1/2 inches tall...
his speech therapy has improved and his therapy time is down to a 1/2 hour once a week instead of an hour...he has tried many,many new foods in the past week,and i am very proud of him...he is now trying to run...

just a cold?

so vince started getting a snotty nose and cough over the weekend..so by tueday when he coughed up yellow mucous i decided i better call the dr to be sure it wasn't an infection...so we drive the 60+ minute drive to learn its just a cold (at this point)they said to continue 4-6 hour albuterol treatments during the day and to allow him to sleep at night...ad to give motrin around 5 since he has been cranky and his body could just be sore...latr after we made it home and were doing another treatment vince puked a large amount..which in a way is good so he gets the crap out...yesterday (wednesday) he was doing much better although still stuffy and has trouble breathing when he runs around...today he is about the same as yesterday..but as of yesterday was eating foods he had not eaten in a long time..soo we go back tuesday for his normal scheduled monthly appointment and they will see how he is...he has no fever which is a big sign there is no bacteria :) so lets hope he gets better completly by tusday!!!!!

proud parents

so we went to the doctor yesterday..along with speech therapy..speech went awful which got my hopes down about the CF center..vince would not eat anything and cried most of the time..he didnt even want to touch any of the food..so we go up to the CF center,the nurse weighs him and he did in fact lose weight because of being sick and not eating..he had no fever and ear was already looking better...he was not put on any new meds..just to continue..his doctor even told me how proud of me he is (including sam) the dr said when a CF baby turns "1" and is at 50% for both height and weight the chance of him dying prematurley is almost "0" so as long as we keep up with his meds treatments and being super duper clean,he has no limit to his age!!!! its a major relief it feels like hes normal but with meds...its not a cure but feels almost as good..and it all because we've done everything to keep him clean and healthy...we also fouund out his gene mutations which are :::R553X and Delta F508

ugh..thinking of changing docs!!!!

today i will use yellow as vince loves duckys...he started getting some spots in his diaper area and on his hips,i knew he could be having a reaction to his MMR shot and be getting measles...so i called the doctor and they say keep him hydrated and call if hes worse..so i call and they wont see him even though his fever continues to go higher,he wont eat--at all..the most hes had all day since 9AM and it is now 3PM is 6 ounces of pediasure and a few drinks of juice...he has only eaten a few yogurt melts..let me just say this is no where near normal for him...the dr says to take him to the Urgent Care..so here after i write this im making a list of all his meds so i remember them all,i want sam to go with us....the dr was not even worried that hes not eating or drinking,or that he has a fever...they say hes not eating because hes getting teeth..no i know my baby and he is not getting any he isnt even chewing on anything like normal...so i better get this list started..but i am VERY upset with our doctors...oh and they will not even let me report this to the state!!!!

hmm???

i really had no title for today...ive been thinking alot lately about CF..vince was admitted 3 times in his 1st year..when they drew blood just after he was 1 they already could not use his right arm because it was too scarrd..so if hes admitted again in the near future by like thanksgiving,im thinking im gonna question a port before all his veins are scarrd but i am not sure yet..he is up to taking more than 4 steps on his own and has 5 teeth..he also says "wiggle,wiggle,wiggle" and in which we think is adorable...here lately it seems as if alot of days have been rough for me...i hate seeing him sick..yes i know there are people living in their 50's and 60's with CF...but what about the young ones?? its always in my mind that sweet conner was only 7..im so scared i will lose my baby boy..maybe i just dont know enough about death and heaven..but i hope my lil guy will live forever,atleast longer than us..and hopefully we get to see him have his own babies..i think im gonna make this short before i burst into tears thinking about it all...

is it getting worse?

i ask is it getting worse..because he has been sick 3 times in less than a year..twice is just 4 months...is this really normal? i know each CF child is different but how come he always has to be sick or coughing..how come i feel like people look at me like im nuts when i say is there smoking? can you wash your hands? no one could possibly understand the day to day events of this disease unless you have it yourself or your child does..i feel so guilty when i tell vince "no" or when he cries...i just want him to atleast be happy if he cant always be so healthy...i feel guilty going tanning and leaving vince at home..but hes with daddy so i shouldnt feel this way...so why do i?how can girls/women that have smoked,drank,and done the illegal drug use while pregnant have a "normal" baby..but an innocent person that does everything possible to keep healthy and safe still end up dealing with a "terminal" disease..the smell of smoke makes me want to gag and vomit..the site of someone smoking makes me want to scream at them...CF is not fair and no one deserves to go through this..

update

ok so back on august 3rd i took vince to his normal CF dr appointment knowing that he was still coughing and throwing up..the doctor ordered an xray..turns out the mucous was too much and turned into pnemonia once again...so they admitted us..they asked if we could be admitted right then and i told them i needed to go home and pack and get the laundry done..so the next morning we had to be in admitting at 930AM..then we were taken right to pre-op..that was scary since he was suposed to get his room 1st then get ready to go in at 11..turns out the had not 1 open room on the peds floor..luckily right before he went in for his line at 1pm instead of 11AM...a room opened up..i didnt want him in the PICU..so i was glad a normal room was open..things went well..we had a 10 day stay..they did a sputum culture after about 5 days..it came back clear of all bacteria..this was a 1st in his life...his xray was looking better so the dr agreed to let us go home after just 10 days..but man did it feel like a lifetime..vince was also told he no longer had any nutrional needs and could have anything his little heart desired...for once it felt a little more "normal" he is now above adverage weighing over 23lbs.but on the short end at just 28 1/2 inches...he is now taking up to 4 steps all by himself like a big boy...tomorrow will be 1 year since i was due...im so proud at how far he has come...congrats baby boy

admission

well vince went to his "normal" checkup on tuesday august 3rd...since he was still coughing and the docs could not hear anything in his lucgs,but knew he cultered bacteria just a week earlier,they opted to do a chest xray..sure enough the mucous was worse than in the culture and he would need to be admitted...so we came in on wednesday and were admitted,before he went in surgery for his pickline we were told the hospital had no pediatric beds open..luckily right before he went in 1 opened up..and it was a new room..so glad =) his arm was sore the rest of the night and he didnt eat much..he went to bed around 1130pm for a nurse..we left around 11:15 as we needed to get our rest and be back when he got up...when we got here the nurse had accidentally woke him up..so she was feeding him some breakfast..now we are waiting for him to get unhooked from his IV...so he can crawl around and play...

SUMMER FUN!!!!

yesterday vince played in his pool and had a great time..he started his bactrim yesterday,and it is not going well...the 1st dose he pretty much just kept spitting it at me..then last night i tried putting it farther in his throat so hed swallow it and he gagged until he threw up..then he fought the rest of his meds and treatments...this morning...the same,except i mixed it with a little gerber berry yogurt.and he took the 1st bite,then started his gagging and once again threw up!! now he is napping and i plan to put him in his pool when he wakes up..

He was pooping really well and im pretty sure we got the blockage out,it was the worst smelling poop hes had,even before he had enzymes when he was born..so he has only pooped a small amount once today so i will try the Miralax once every other day,every day was causing too much poop..sometimes you have to work with different meds to see what works best..like he gets his vitamins and salt in the same bottle and has since he was diagnosed at 3 weeks..other than these issues he seems to be having a wonderful time this summer....however hes been mad cause sam has been cleaning the fish tanks out,and vince cant be on the floor to crawl and get into things..well i am gonna get off here,and get things ready for the pool when he wakes up..here is a picture of him in his pool yesterday =)

Bactrim

ok,so the doctor looked at the culture (finally) and he is not growing a lot of bacteria but since its there and hes coughing so hard he throws up,hes being treated with Bactrim..if he is still growing it on the next culture he will most likely be admitted is what i was told..atleast my hopes are high now,and we are still home..
***some good news is that vince is pooping very well..he even got up in the night because he had pooped...of course i was tired and did not woke up,but hes pooping and thats what counts..im so excited about this =)he also ate some fruit loops for his 1st time today..he likes them but is still learning that they take more chewing than fruit puffs and cherrios..well today will be a short one,and we will keep this all good news

Staph/Psedumonos

ok,so vince threw up again on saturday night and still is having only SOME had poop..however when i called the doctor this morning to check on his culture,it is still pending but is already growing staph (MRSA) and psedumonous...so i'm pretty nervous,she said its a small amount..and the final result should be in maybe tomorrow..she said to continue the Miralax..so i am hoping since its a small amount that he can either do an oral antibiotic,or another breathing treatment..
On a good note,I got a call from Help Me Grow,and they want to buy us a new highchair since his does not have a seat belt,just a tray..and they also gave me the phone number for the CF doctor from Akron Childrens that comes here to Norwalk about once a month..so I am hoping I like this doctor so we can be closer,and Norwalk is where I delivered so the hospital seemed pretty nice,oh and we all know what its like to live on hospital food during the stay and Norwalk even has more/better food =) I just had to throw that in there...well I am gonna get ready to feed the little man some breakfast...

VINCENT

ok,so this is my 1st post.I am Kaylah,Vince's mommy..his daddy is Sam,and he works +40 hours a week so i can stay home with Vince. Vince is going to be 11 months old tomorrow. He has Cystic Fibrosis(CF) and was diagnosed at 3 weeks old..when i was pregnant i chose to have the carrier testing done,even though no family on either side has ever had CF to our knowledge,when i tested positive,sam was tested and was also positive..so at about 7 months along we knew there was a chance our son would have this awful disease. On Septmeber 17,2009 we went to Toledo Childrens Hospital and had a sweat test and chest xray done,which all confirmed he did in fact have the disease,we were told at that point he had bronchitis,but everything would be ok..then 5 days later we were called and told he had pnemonia and needed to be admitted for a minimum of 10 days but to plan for a 2 week stay..and how exactly does that = ok? not in my book..when he came home he did great,had finally gained 2 pounds since birth and looked and acted happier than ever..hes done pretty well with everything..he was admitted once more on March 26,2010 for another 10 day stay for pnemonia..he is still doing well,however he has began puking atleast 1 whole feeding a day for 4 days..he is also having trouble pooping,itd be diareah,and then be a golf ball,so once again we headed to Toledo,where we learned he has the start of a stomach blockage and the hard stuff is part of that blockage,and the diareah is the poo being pushed past the blockage..so he was put on miralax..this is day number 2 and we still have not had a good poop..gonna wait until monday or maybe tuesday and go back to Toledo for the same issue..well thats all for now..