september 17,2009

so 2 days ago on the 17th was 3 years since sam and i were given the terrible news about our baby! that day we thought we'd never have more kids,that vince would never be normal...he'd already had a chest xray that day,a sweat test,a throat culture,and was starting many medications and therapies! we were told he'd be fine that he'd be normal with extra precautions taken at home..and less than a week later he was admitted for his 1st round of IV antibiotics from pneumonia! things were very hard those 1st few days and is still hard to think about..it caused sam and i to argue some (mainly i'd yell cause i was stressed)...today sam and i are stronger than ever and have a beautiful healthy 3 year old boy! we at the time thought CF was the end of our world...but as time grew on we learned that CF was less of our worry when it came to his eating and sensory issues,which are more stressful now! CF is very manageable! and for that we are thanful..sure it has it's rough times,but when you go out it's not know,it doesn't have to be told that there's a "problem"..but when you go out to eat and a toddler doesn't get food,the looks you get are horrible...if only the people watching really knew how much it hurts that he doesn't eat..and that forcing will just make things worse! vince is getting much better with food in all settings and eats a few things at home now...CF has changed our lives and how we raised our son..but in a way it changed it for the better! we learned we are not alone,and we learned how things we were once doing or going around even hurt our own lungs! we didn't and do not smoke,but now if we are around it we go home and wake him feeling sick! i'm glad CF has taught us how to be a little healthier for our baby love! and we plan to raise vince's little brother Trevor just the same whether he has CF or not!!!!

upcoming plans :)

as everyone knows i am getting closer to my due date..and having a young child with special needs and no babysitter has had me thinking on what to do with him while i'm in the hospital..sam and i have come up with the perfect solution for US! during labor and delivery we will invite someone to watch vince..if he is asleep then this person will sit in the backround very close to vince (i'm taking his travel bed) incase he were to wake up..otherwise if he is awake we will try having him in the room-the same person will still hold him in a chair or such...if he becomes too "noisy" or not listening they will go to the waiting room...there will be 1 other person in the room with a camera for those 1st moments of the new baby's life! we will allow those 2 people to stay for a while and after that we will give the new baby his 1st bath and have our 1st family of 4 time! vince will be staying at the hospital from about dinner until the next morning..he will have a few cars and i'm getting him a portable dvd player and cat in the hat dvd's to help entertain! sam will take him home for a few hours in the day for a break and "rough play"...i will only be in the hospital 1-2 days after delivery..BUT with vince rarely having a babysitter i feel he'd be more stressed staying without us..along with that i want him as involved as possible! it's working well and he is not yet jealous,although i know that can change but i think this is the best for all of us!
      he is still doing alright..some more asthma trouble and tummy issues but they are getting better! his weight is still the same at 30 pounds but i'm glad he's not losing..his ribs are much more noticable though..he has gone 9 months now with no gain!

this will become private!

I have decided now that vince is getting older alon with the fact that some of his "family" doesn't seem to care much about him or his health i will be making this blog private! please be sure to leave an email address so i can add you to the "invited group"!!! Vince's lungs are doing amazing as far as bacteria goes! he is currently only growing staph which he has had atleast since his very 1st throat culture when he was 3 weeks and 2 days old..so this is great! the heat has caused vince a large amount of trouble with his asthma,i'd say worse than the cold this summer! he is on ventolin and advair inhalers and is not on singulair..i add this crushed to his juice and he does not even notice! it is helping a TON! he is now taking all of his oral medications! his prevacid is also put into his juice..he takes childrens gummy bear vitamins at a 4 year old dose! he also takes gummy fiber chews! i like these better than miralax for him! it feels like less of a medication! and both of his dr's approved it! he even takes his creon 12,000 (enzyme) before his pediasure! BUT it's still not helping him gain weight! and he's getting 1-2 pediasure 1.5 in daily! thats 360 calories per can! he is eating new flavors of cherrios..he bit a bite out of an apple this week which he spit out,but the fact that his teeth went into it is amazing! he chewed a small piece of pretzle at therapy this week and gagged multiple times but was able to work through it! there are so many things that he is doing now! he is fully potty trained (within a week) and only at the age of 2! he still wears a diaper at bed,and i'm thinking about working on that around age 3 or when baby comes! (since i will be up in the night anyway i can get him up as well) he i just doing amazing! he has lost a few more ounces putting him right at 30.0lbs! any more weight lost and he will be under 30..as i start buying things for the new baby and reading more weight limits alot of them go up to 25 and 30lbs! such as infant swings! it's just crazy! his ped said his weight is not good but it's not the worst,and the fact that he is filled with muscle is keeping him looking good and not scrawny! he is talking more now too! he will be starting preschool this fall which i'm both glad and sad...i can't believe he's growing up! in exactly 1 month it will be the 2 year anniversary of his 3rd/last hospital admission date!

vitamin k

ok..as most of you know vince only eats these foods (and it's on occasion-not an every day basis) cherrios/vanilla yoplait yogurt/applesauce/fruit snacks/gummy bears...he does not take ANY of his oral medications including his enzymes/antacid/vitamins/salt/or antibiotics (although we really push the antibiotics as much as any human really can!) because vince needs enzymes to absorb both fat and nutrients he does not gain weight or get the nutrition he should..including vitamins to his body and brain...his vitamin D came back low in december's blood work and he was started on 1ml of that daily...at 1st he'd do it..now it's a struggle! he also has not gained weight in the past 6 months..but has been able to maintain his weight...dr's are very confused how a CFer can not eat/take enzymes and not be losing drastic amounts of weight! lately a new problem has come up...i noticed unusual bruising.. (upper thighs/butt/back) and he had no complained of hurting himself in any way..so i thought i'd call the peds and do that along with a weight check..peds believes vince's vitamin k is low which is a fat soluble vitamin meaning vince needs enzymes to absorb this! yesterday he was standing near me while i got his pediasure and i noticed his arm looked funny..well it's bruised so bad it looked like he had been abused...red/purple/blue...he has a couple little ones up near his eye (he told me fell off the bike-but he shouldnt have bruised) and he has another largish one on his ankle...the way these are popping up i'm glad i called the peds when i did..the only thing vitamin k is found in that i can get into vince is blueberry juice..and it was only in this organic stuff that was like $5.99 on sale! and the bottle is rather small...peds is agreeing 100% on a gtube and even called akron and recomended that to them as well..(we're going to akron for a 2nd opinion on april 17th) i talked to our pharmacy (in person) and they feel vince needs the feeding tube NOW..that even april 17th is too long to wait!!! well this is the update for now..we are doing all we really can for vince and pushing this gtube as much as we can...

CF clinic update

ok...so i posted yesterday that things did not go well...most of you know that i went in wanting a feeding tube..vince has not eaten since he was 9 months old..he eats cherrios/lucky charms minus the marshmellows/crunchy nuts/fruit snacks/vanilla yoplait....he takes pediasure 1.5 but refuses all oral medications...he will spit and sometimes gag on enzymes..all other oral meds he gags and pukes up and sometimes begins dry-heaving when he doesnt have much in his stomach..his oral meds are these:::
zenpep 5,000-2-3 per meal
zantac 1.5ml 3x daily
salt 1/4tsp daily
CF vitmain 2ml daily
vitamin 1ml daily..
plus abx and steroids when needed
because he does not take his enzymes he does not abosrb most of the fat or nutrients in the foods he takes in..so therefore both his body and brain will grow at a slower rate..here is what happened yesterday!
yesterday..vince weighed in at 30 pounds he is in the 50% for weight and about 40% for height..which but his BMI right around 50% so overall he looks ok..but i dont like that i can see his ribs...his pulse ox showed only 95% which i believe is vince's lowest yet! but i was told they dont worry unless its below 93..and also i heard would need oxegyn at 90..so i didnt enjoy seeing a 95..i told the CF dr that both the ped and i along with sam and our families agreed on a feeding tube..he told me that it would be malpractice to perform this surgery on a child who is in the 50%...he says i am letting vince control me and that i need to be him mom and make him do these things..i told him he didnt understand and began to "yell" and say he did understand because he had 3 toddlers! ok well i bet none of them were in this situation...he said he made his son go a week without dinner until he ate green food..i have tried refusing vince his pediasure and after 2 days he quits asking because he knows he can not have it...i told him that vince does not eat and he said well he must be because he gained weight..(he's been at the peds all winter just about every week and has now lost weight..) so he doesnt even believe that vince doesnt eat..he says its all behavioral and that he needs to see a physcologist..even though he is currently being watched for sensory processing disorder! sooo....after all that he did not look at the blisters on vinces butt/mention the 95% o2/or even say when he wanted to see vince again! so i don't know where to go from here! he is the head dr at the clinic so there is no one else..pesd already agreed on a feed tube so i'm hoping he will refer us to a surgeon! and then i may possibly get a 2nd opinion from toledo..what do all of you think?

gube?

ok so i KNOW vince needs a gtube..he is 2 1/2 years old..he was born at 8 pounds 6 oz...he gained fine once on enzymes and always has since (for the most part) at 9 months old he was admitted with pnemonia (his worst one) and at that time ate french fries/ice cream/jelly...once home he quit eating EVERYTHING! baby food went from 2 jars down to 1/2 and he would gag on anything else i offered even his cereal...he eventually started eating cherrios and fruit snacks and vanilla yogurt...he was put on pediasure at 10 months for nutrtional value..as he got older he refused and gagged on more and more...at 18 months and we switched clinics and he was put on a higher calorie formula..but is still refusing the enzymes...he never had to many greasy problems...so now that high cal formula is no longer working..even when increased..and when increased it is blisterin his butt...i KNOW he needs enzymes/vitamins/acid reducer/salt/allergy meds....but that is really not easy in our situation..no matter what we do he usually pukes from forcing those things...our entire famil in now in agreement that vince should definitly get the gtube...the dr's just say they dont want to perform the surgery for "no reason" he has not eaten in almot 2 years and has gotten worse...what makes them think he is gonna eat out of the blue? so my question is how do i cnvince the dr's that its time...he needs this tube? he is very aggressive and i've heard it can mean he is hungry...he also whines alot he will say he wants more milk/yogurt ect but then begins gagging...so advice?

biggg update

ok so here it is...vince has had a cough most of the winter,especially since december! he has also been stuck at 30 pounds for quite some time...he is in a major refusal of his enzymes (pills to digest food/absorb fat)..so with that being said yes it will be hard for him to gain weight..but he doesn't have a terrible innsufficiency..but it is there..so we have increased his pediasure...which is return is sending out more grease and now he has a blistered looking rash on his little bottom! he hates being changed right now and will wait to tell us he has pottied so he doesn't "have" to be changed...the CF center was notified by the peds (who is awesome) about the weight issue and they are not pleased but do not feel he is in danger yet..and will not yet do a feeding tube..ugh really? just put the thing in so he can get his meds and used to it before he starts school this fall...ok now onto the cough..like i said he's had this cough most of the winter with a few day/to a week breaks..we have tried a few antibiotics-both oral and inhaled..neither have which helped long term..we even increased his inhaled steroid and that did not help but more than about a week..so now tomorrow we will start a 5 day course of oral steroids and if this does not work there is a POSSIBLE admission..that i am planning to push for!! he has not been admitted since august of 2010!!!! and i feel he has been on plenty on antibiotics in the past year and a half..and now they are not helping more than a few days/weeks...so let's get him in and get him "fixed" for a while again! i was told cleveland's policy is to admit him and get the picc line in and then after about 3 days on abx if he is tolerating everything we would come home with a picc and meds...so that's what's going on this time around...i also found out i carry the R553X mutation...