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Text of the page (random words):
hard i knew that it was time to call the hospital our normal protocol is to wait 24 hours and give her meds to try and stop the attack i got very scared and didn t feel that i had it in me to wait this has been going on and off for almost a month i called the on call gi who agreed that she needed a room we left the zoo and began driving to the er but then realized that we would be waiting hours in the er and it would just be better to go home and wait for the room as soon as we got home after an hour of driving we got the call that the room was ready of course the state of my house is a disaster because i simply have not had the time or the energy to clean it my plans were to clean for an hour and do as much as i could i couldn t bear the thought of my mom or anyone coming to pick up stuff for us during our hospital stay and seeing what had happened to the house i ran around desperately picking things up and doing dishes and meanwhile sweet b seemed a tiny bit better we decided to keep her home for the full 24 hour period to see if we could abort the attack i called the gi and she agreed to trust my instincts as the mom a few days ago it was brought to our attention that cyclical vomiting syndrome cvs could be due to other problems such as metabolic disorders or other things this lead me to google which lead me to very bad things i ve seen that cvs can be a sign of fatal diseases such as mitochondrial disease i told the on call doc that sweet b needs to have this particular test done to see if it is a metabolic syndrome she agreed to it embarrassingly i asked her if sweet b was going to die and if she had these diseases and she couldn t assure me of anything she doesn t even know sweet b i began crying and told her i had been googling and instead of telling me to get off google she said that these things could be wrong with her and that s why we have to test cvs could mask a deadly metabolic disease in one third of children with cvs they have metabolic disorders or mitochondrial disorders some of which are fatal i ve not been well and frankly i ve had two friends tell me that they are concerned about me my weakness is google and obsessing on all of the things that could be wrong with her and for the last few days i have been a wreck googling and researching and looking at studies that have been done sometimes knowing too much is not a good thing the fact that she went into full on episode today was enough to almost throw me over the edge the plan is to re evaluate tomorrow morning sunday morning and if she is still in episode then we must go meanwhile tonight i am packing and cleaning because i just don t want my house like this it makes me feel like a terrible homemaker and mom and i m praying that i will get a lot of it done tonight in the middle of administering meds and nursing the baby and watching him of course so far i ve done dishes and organized a lot and mike has vacuumed there is still so much more to do but i will have to let it go i have done what i can i think i will sleep with sweet b tonight i am scared of all of the meds we have given her it has become clear to me that i need support with raising a child with a chronic illness cvs is devastating on the lives of the person who is ill and their families adults are unable to work and children miss so much school and it is completely disabling we have gone from having a micro preemie who didn t eat and was given a g tube to a child with a tethered cord to a child with cerebral palsy to a child whose cvs diagnosis makes the quality of her life and our lives diminished i obviously need some sort of support group and a counselor who can give me strategies to get through her episodes because by day four i am a mess watching your child suffer endlessly and not knowing why and not knowing if she is going to live is something that should only be reserved for the people in hell certainly not a family who has given up everything to give this child the best shot at life and maybe just maybe god could have had a little empathy for me and realized that i am not the strongest person in the world and maybe another mother would have handled this much better it has been a really terrible month that began with a car accident that i was in with the kids while on the way to a friend s home it was very scary and it was very much not my fault but there were no witnesses and therefore her insurance has refused to pay so we are left with a deductible to pay which we don t have it all and a dinged up car our only car then began the retching which turned into a virus which all of us got and then turned back into retching and this is when i lost it i suppose and i could not clean my house where was i going with this oh i guess i was just saying that this has been a crappy month i have learned through speaking with other families of special needs children that you quickly learn who is there for you who will take the time to pray for you or offer you kind words of encouragement through texting or message and you unfortunately learn who won t do these things it is an eye opener certainly was that a bit too honest probably but it is the truth and i ve been so fortunate when i see such good character and empathy in people i am endlessly grateful to those who are keeping me above water right now and have been there through this most difficult journey over the last three and a half years it is my promise to do the same for you when you experience hardship and need someone to hold your hand and tell you that it s going to be okay humans need other humans i ve met a few friends recently who are very much encouraging me right now and i hope to one day repay that favor i will try to give you an update tomorrow but i cannot promise anything today i was completely unable to talk to anyone due to fear i wrote a very small group text and sent it to those who knew what was going on today it was difficult to even do that i just don t have it in me to explain the meds and what i m doing to help her and what our plans our it s exhausting so it was a very general message it must be of no surprise to you that my faith is struggling hell we haven t even been able to go to church consistently because she always is having an episode when we finally decide to try a certain church she is either in an episode or we or too dang tired or we know that we have to take advantage of a good day and go and do something fun so while my faith is really not there it is about as big as a mustard seed and according to god that is all that i need right now i accidentally spilled mustard seeds in my kitchen and they are very small but i m thinking that pretty much sums up the size of my faith right now so i call on you my faithful christians or whatever the hell you are see if i was a faithful christian right now i would not be using such words as hell please pray or send out light or do a rain dance for our sweet b she really needs it and so do we posted by sweet b s mom at 10 03 pm 0 comments email this blogthis share to x share to facebook share to pinterest sunday june 30 2013 no hospitalization please here goes the task of writing a blog post with enough information but not too much information i don t want to sound pathetic why do i care this is life i am not one to sugar coat things or pretend that my life is perfect it s a shame that the only time that i write posts is when something bad is happening it s a shame because there is so much good that is happening in sweet b s life compared to what we were told to expect this is something that my husband continually reminds me it could be so much worse we didn t expect her to live and we certainly never expected her to walk or talk or go to school so this is something that we must remember but seriously who wants to have to repeat a mantra like that over and over let s be real here our life is certainly not easy right now nor has has it been easy for the last three and a half years since mid pregnancy with her and i suspect that we have many more years of it not being easy and it might not ever be being born at a pound and having a tethered cord causes problems and we see the effects of her being a micro preemie every day some are so fortunate that they grow out of it and meet their milestones and aren t met with any lasting impacts sweet b has definitely been impacted by prematurity and i believe she will feel this impact for her entire life strong b exhausts me in a physical way he s a typical baby he cries and demands to nurse and wants attention and love constantly sweet b exhausts me emotionally the worry that i carry for her in my heart weighs me down in a way that i don t even want to describe here since i have had strong b and he s so typical i have become keenly aware of just how difficult and different our life is with sweet b the hospitalizations and g tube and therapies and constant appointments is such a contrast to the normal mom exhaustion that i face with strong b he eats he is almost walking he went from crawling to cruising along furniture within a week rather than a year we don t have to fight for every single milestone with him this has been so healing but has also showed me just how different life with her is and how much more of a daily struggle that she faces as opposed to a typical child sweet b s cyclical vomiting syndrome cvs is more challenging for us than the fact that she only eats through a feeding tube in fact living with a feeding tube for the rest of her life would be easier than living the rest of her life with cvs her cerebral palsy is easier to deal with than cvs every month on the same day each month sweet b goes into a cvs episode we try to ward it off with medication but nine out of ten times this doesn t work she becomes a child whom we don t know it is called a migraine of the stomach she cannot open her eyes fully she stops talking for the entire week we don t see her smile ever she hits all of us disciplining a child who hits because she feels bad is quite a puzzle to figure out and we haven t figured it out yet i m hoping her school will help me with this she retches nonstop but cannot throw up because of the surgery she had if we dare to go out in public people stare because she doesn t swallow her spit she retches and then large amounts of mucous come out of her mouth and pools into her lap today we were in a parade with the moms club that i am in i was very embarrassed worrying that people thought i was crazy for making her go out like this let me backtrack and tell you that she had a cvs episode for five days and then she got a virus we all got this virus that made us cough and feel awful even baby boy got the virus as soon as it got better she went back into a cvs episode so that s two weeks of her and us being completely miserable because she s miserable i had to go to the parade today i had to join the land of the living and just get out and socialize unfortunately i spent the entire time worrying that people thought she was just having a tantrum or that i had no business having her out my original plan was to just have strong b in the parade but i put sweet b in her cute dress and i so badly wanted her to have a good time but it didn t happen she was retching as we walked and we put the umbrella up on her stroller to hide her and i wiped her mouth as we walked and she retched it was about as fun as it sounds it was nice to get out though i really am serious about that i need to get out more especially when she s having an episode last night i took strong b on a date to the mall and i had such a good time trying clothes on him and just feeling like a typical mom for the hour that we were there sweet b is set to start a very special preschool program in august and my fear is that every time she gets a virus a cold or the flu that this will put her into a cvs episode and she will miss two weeks out of every month as it is she is probably going to miss a week of school each month from her monthly cvs episodes i so badly want her to be able to attend school make friends and just live a normal life i am possibly planning on home schooling her after preschool but i truly believe that she needs to attend this special needs preschool to get her going i ve heard amazing things about it and have met some of the faculty and found them to be so caring the hardest part is seeing her suffer and not being able to do anything her personality is normally so vibrant she chases me around the house demands her tv shows runs in to every room that i m in and slams the door and when we get out of the car she rushes to the door so that she can slam the house door on us she loves to dance just like i used to and she has no qualms about performing for people she loves imaginative play and has very involved scenarios going on with her little people and horse and cow and her little people playhouse she has a different voice for them and it is soooo cute the second that her cvs starts this all goes away and she goes into her shell her eyelids don t even open all the way she turns pale she doesn t want to be held or kissed or for me to read her a story she wants to lay in bed all day or stare at the tv so i watch her from a few feet away and i worry i cry silently i wish that i wasn t nursing strong b for that moment in time so that i could take something to help the anxiety that i feel tonight she had a serious retching attack she could barely catch her breath so i held her on my lap and tried to drain everything out of her stomach through her g tube mike pushed on her stomach to try to get the air out with her fundolipication she cannot throw up or burp so trapped air is painful mike repeatedly pushed on her stomach to get all the air out and as the air and liquid came out i poured it into a cup a clean cup because i have to re administer it and i was feeling very sad and wondering if she even loved me it sounds dramatic but i haven t received a hug or a kiss or even a smile for two weeks well i got the encouragement that i needed when she very lightly stroked my arm a few times and patted my leg it is such a small thing but so uncharacteristic of her during an episode and exactly what i needed to keep going until this particular episode is over if she is still having the episode on monday or maybe even tomorrow then we will hospitalize her her gi doctor wants us to hospitalize her after twenty four hours of an episode but the hospital is exhausting you cannot leave the room you cannot sleep because the doctors and nurses are always in there i cannot stay there because i am nursing so this means that i am home alone with strong b without a car and worrying the doctors administer the meds just like we do which sweet b does not tolerate well and becomes mean but i feel it s just being irresponsible not to take her if she is still bad tomorrow i m praying that we have our sweet b back tomorrow although i ve been dealing with this long enough...