i used to be scared of this disease.

its true. when evan was diagnosed with hemophilia, i really fell apart inside. my emotions took over and i cried what felt like nonstop for days. i was confused and terrified of the unknown. the only thing i had ever heard about hemophilia was when i was a kid and watching the made for tv movie about ryan white. yep, that ryan white...the young boy who died of aids. my stomach turned. my mind raced. what was happening? why is it happening? was this karmic justice for something i had done? something i hadn't done?

the first few months of e's life are recalled in my mind as a rollercoaster of emotion. i remember the first time i took him to st. joe's to talk with sara about hemophilia. he was eight days old. she bombarded me with books and pamphlets that i didn't want to face. i didn't want to read them. i didn't want him to have this. i wanted to hide from it. i remember leaving that appointment with my eight pound baby and driving over to my mom's house so my aunt from virginia could meet him. we listened to coldplay lullaby music and i sobbed while trying to navigate the roads.

and then, one day i found a bruise. for no reason. it was just there. a big one that seemed to eat up half of his arm. it looked enormous on this little creature. i remember staring at it and just looking and feeling it. i cried. i was scared. and when i composed myself, i remember looking at my son who was nursing and oblivious to what i was feeling and thinking "wait a minute, this is him...this isn't me." and i stopped.

i changed my view. i had to. i could let this affect him in the negative way it was affecting me, or i could learn to embrace it and teach him the same.

so thats what i did.

and you know, barring a three month period of absolute fear and multiple hospital stays, i think i have done a good job.

and as i look at him today, i know he is going to be alright. he's a fearless two year old that happens to have blood that doesn't want to cooperate sometimes. he's an amazing child who doesn't even notice that he's getting a needle stuck in his chest three days a week. he is an amazing person that wants to play and learn and explore. he teaches me so much. he reminds me that life is good. he allows me to remember that we can learn to adapt and live with things instead of lamenting them.

evan is a totally amazing little boy. he will grow up to be an even more amazing man. i just know he will. and i think he will teach many people along the way how to embrace the unknown and have compassion for others that just happen to be a little different. and remind them that different isn't scary. and at this moment, and probably most importantly, he has taught me that there is no reason to keep being afraid.

i've cancelled my hiatus.

okay, so i wasn't gone on purpose...i think i just got super lazy? ok, maybe i didn't do that either. you see, my original purpose for starting this blog was to document what we were going through with e's disease and share with others how we handle things and where my head, as a mother through all of this insanity, is at. thankfully, we have had a pretty easy go of things this past year and there hasn't been too terribly much to report.

i suppose one item to note to other parents out there is that we did get through seasonal illness without a hospital stay. twice. i decided to meet with one of the four hemotologists in the practice and plead my case about my knowledge and ability to care for and access e's port. and that if there were a cold this season, which there inevitably would be, that i would be more than happy to treat him at home until we were sure that there were an infection in his port that would mandate a hospital stay. i had the full backing of the head hemo nurse sara, and it was decided that i could handle this stuff at home if we should need to. and i did. twice. e had two horrid colds this past december and none of them landed us in the hospital. and thank whoever you believe in for that, because the first fever lasted eight days. it would have been miserable in there for over a week.

we are still on prophy treatment, but have gone back to a monday/wednesday/friday dosing schedule. e had some bloodwork right after the first of the year and his levels seem to have elevated back to the 5% range. nobody seems to know why his levels have fluxuated so much, but we are certianly pleased to see his levels close to where they were during his first six months of life.

i intend to update more often (shout out to allison for kicking my ass into writing), even if the original intention of this site may have to shift to keep up with the frequency.

the calm before the storm?

i realise this is pre-emptive worry, but i wouldn't really be me if i weren't worrying for nothing about something. so, cold and flu season is almost here. it's a real bitch by itself, but throw in a kid with a port and it becomes a raging one. so i find myself trying to enjoy the days of playing outside and sending him to the gym daycare with the other children before i find myself wrapping us all up into a plastic bubble so that we aren't living out of st. joe's this winter with small fevers that hopefully haven't turned in to port infections.

i have decided that i am going to be a bit more commanding about this, though. i spoke with kathy (a nurse from hoss) about the possibility of doing the first 48 hours of antibiotics at home while we waited for cultures to come back. for non-hemo parents, this would be the first 48 hours you are mandated to stay in the hospital at the first sign of a fever (which, i should tell you is only allowed to get to 100.5...oh yeah, and you can't leave until you are fever free for 24 hours). she said that, while it is up to the doctors in your practice, it is not unheard of to allow parents to administer these antibiotics at home while you wait for the cultures to come back. so i am going to try and strong arm the doctors to follow this plan with me. but i am going to go in ahead of time and try to sweet talk them first (are you reading this, sara!?!). i figure, if i am capable enough to stick a needle into my son's chest every other day then i am more than capable of keeping it in there (with the biopatch on) and hooking up some antibiotics every 8 hours. i would even push it slowly over 30 minutes if they were unable to lend me a machine. i would also promise not to bathe him or allow him to run around like a wild beast with a needle sticking out of his chest.

you see, it's not that i don't appreciate the doctor's perspective. i do. truly. however, something i learned last year when we were in and out of the hospital three times over two months, i realised that noah gets pushed to the side. and while he would never begrudge his brother the attention, devotion and care he needs from his parents, it definitely wears on him. he worries for his brother. he misses his mom and dad. he misses being home. and being without him for so long...not being able to show him attention and affection daily like i would if i were home is really trying. and one thing i am trying so hard to do with this disease is to keep things as normal as possible. for everyone...evan, noah, michael, and myself.

who knows, though...maybe i need to redefine normal.

sometimes i forget i am here.

well, i mean...i forget that i have this place. i don't know if thats a good or bad thing. on the good side, it means that things with e have been good. nothing really to report other than we are still doing prophy three days a week. it still feels emotionally taxing at times. sticking your kid with a needle has come to be the easy part. its the mixing and the thoughts that swirl around in my brain while i am getting things ready that are tough. its a constant reminder that my idealistic thoughts of parenthood with regard to him will always remain just that...idealistic. and really, i didn't have any delusions of grandeur or anything. i just never imagined having a child with a chronic illness. my therapist referred to the situation once as me having a "sick child." and while i never use this term, the conversation stuck with me. he is sick. he will always be sick. nothing, well now anyway, will change it. and it sucks. it makes me mad. it makes me cry. and most of all, it makes me wish there was something i could do to change it. not just for him and our family, but for every family that suffers from this little known illness. it doesn't get the same sort of press as cancer or hiv or diabetes. but it is just as taxing and scary. i find myself worrying all the time if he is bleeding and i don't know it, or if some parental decision that we make will be the right one. the constant worry and second guessing is so trying. and i am not the most patient person in the world.

on the bad side, my not being here makes me feel like i have alienated a population of people that regularly check in on this site. its weird to me that people from all over check this place out...as far as europe and asia. and my lack of updating reminds me that there may be moms and dads suffering from the same anxiety that i suffer from, with nobody that truly understands it. when e was first diagnosed i wanted nothing more than to quietly separate my thoughts and know that i wasn't alone in my fears and frustrations. and i wanted someone to tell me that everything would be alright. and while i cannot promise that...because, really, who can...i feel like i can offer some sort of relief in knowing that doing the best you can will yield good results.

and, while i am at it, i should say to all you other parents facing the same sort of obstacles that we are...if you ever need to talk. or cry. or vent. i would totally be willing to listen.

hey! help a hemo out =)

so, our spring walk for bleeding disorders is coming up at the end of next month. my goal this year is $3000. i know it sounds like a lot, and its such a strange time to be giving any money away, but the hemophilia foundation does such great things for families and research and any amount that you can give to help out would mean the world. so, if you want to donate you can here. i promise you'll feel good about where your money is going!

our son, the medical anamoly.

so we got e's blood results back from his lab draw this week. first, his factor level was above 1% after 72 hours which i am told is what they want to see. so, yay. the two tests he got (the lupus anticoagulant and the mono test) were hopefully going to solve the mystery of the decreasing factor level. but...its not to be. both tests came back negative.

so. back to the drawing board.

currently, evan is under the care of the oldest doctor in the practice (i'm going to guess he's about 70?) and sara (the nurse, not me) said that he told her he has never seen this before. i assume he means the levels decreasing, a positive test for an inhibitor and no medical explanation.

it was decided that we would try immuno-supression for the week. i gave him his regular 1250 friday dose, and will be infusing him with 1000 units every day for the next seven days. that puts us out to next saturday. then the following monday i will take him back to st. joe's where they will draw more pre-infusion blood and do the mixing study again to see if he still comes back positive for an inhibitor.

michael and i are thinking that if he does come back positive for the inhibitor that we are going to consult a second opinion. i feel weird saying that, because i love the practice that we go to. and i love sara so much too. and i hope this sort of thing wouldn't hurt their feelings, but i feel like maybe we need to see if someone else can help us solve this mystery.

poor boy is only 21 months old and i already long for the days of the 5.9% levels.

i've never been a fan of speculation

and i have come to find that so much of medicine is just that. speculation. and waiting. one of the doctor's in e's hemotology practice brought it to our attention that if his levels have been decreasing that there has to be something going on...even if he has consistently tested negative for inhibitors. so i took him for some bloodwork a couple of weeks ago where we drew blood for a mixing study. i say we drew blood because i drew it from his port. it is so weird how i am now capable of doing small medical procedures for my child that i never dreamed i would be responsible for.

anyway, the mixing study results came back positive for some sort of inhibitor activity. or, at least, i think that's what they said. there is so much that i don't understand right away and i tend to get my facts confused.

so, back to the lab tomorrow. for more bloodwork. this time it is not to be drawn from the port. they are going to run tests to see if evan is positive for a lupus anticoagulant or if he has been exposed to the mono virus. both of these things, i have been told, can affect his factor levels in a natural way. i was also explained what they were (the short, peripheral-hemophilia-additives-for-dummies version) and we are hoping that the results show that he is positive for the lupus anticoagulant. the reason for this is that there is a possibility for the body to correct itself on its own and for his levels to go back up into the moderate (or maybe back up into the mild) range. it wouldn't be a definite, but a maybe. and that's always better than a no. if he is found to have been exposed to the mono virus, then it is a definite no-way-in-hell can his levels ever go back up to where they once were.

and you know, i feel so many times like i have a handle on the tension of this disease. and then we go looking at stuff like this and i realise that i don't. even though this isn't a life or death kind of situation, it delivers stress through my body just the same. and often times that stress leads to anger, which i try so hard to fight because its sort of a wasted emotion in terms of this disease. at this stage in the game, anyway. plus, who do i even get mad at? myself? my child? some spirit that may or may not exist? nature? science?

i guess i try to steer my mind in a new direction. a direction that is more positive for everyone. and i think about the lovely people...people that i dont even know...that are working their asses off to figure out how to cure this shit. and i smile at the thought of them. and wish there was something i could do to help. and i can't wait for the day when e's disease is cured. because hopefully i will be alive and able to hug and kiss these people and let them know just how thankful i am.

but for now, i guess i'll just keep going about my life of remembering anti-seizure meds twice a day, making sure the helmet is always on, accessing ports, and packing up a bag full of medicine and needles that would make a day clinic look like an amusement park.

I did it!

well, i did it. i accessed e's port today. the nurse was here and asked if i still wanted to do it...i sort of hesitated and she said "yep, you can do it." so i got everything ready, and i didn't even screw up putting on my sterile gloves and keeping them sterile. and then i accessed him. it was such an amazing thing. i was scared and nervous that i was going to mess up something, or hurt him...but it went so well! he laid there and we sang songs as i infused him...and he didn't make a peep when he saw me with the needle. this is such a huge deal for us...it means that we can travel without worry now. it means that if something bad happens and he needs to be infused right away, i can do it myself. and, of course, it is just another step on this crazy hemophilia journey that i seem to have conquered.

when e was first diagnosed, i was so scared...and so, so sad. i honestly mourned my idealistic views of his life for a long time. hell, i still mourn from time to time. but its hurdles like this that make me realise we are creating a life for him that is full of capability and hope and independence. as a mom, i work so hard to acchieve that last one...independence. and i have done a hell of a job with noah, and have been scared that i would coddle evan too much to allow him to be like his big brother. but after i find that i can handle the tough parts of this disease, i realise that i can teach him to handle them too.

and, for your viewing pleasure, here are some more recent photos of him. he's growing too fast =(

giving daddy "mwah's"


lounging with daddy on the couch


snuggling with "wowah" and "so cozy" (his blanket)


acting silly wearing noah's army dress up goggles

entry has been made.

well, e got his first infusion yesterday. i have got to say that emla cream is nothing short of amazing. we have had some toruble with the nurse that was supposed to come out here, so i took him to st. joe's until we can find someone that is on board with the way we choose to access his port. when it was time to lay him on the table he got really nervous...he knows that usually means a lot of poking to get an iv in. plus, there was a nurse (that he has never met before) holding him down with her "hug" and she was wearing a mask. we were soon able to distract his apprehension and anxiety by singing "head, shoulder, knees and toes" and he didn't even notice when sara accessed his port with the needle. in fact, he didn't notice she was doing anything at all. it was great.

now i just need to get comfortable with all of this so that i can go ahead and start giving him the infusions.

port surgery went really well!

i was pretty nervous before e's surgery. i think it was the thought of my child having to be put out. and the fact that he was being cut open. and he just happens to have this disorder that keeps him from clotting well. so, yeah...cutting him open was frightening. however small the cut was, it was still cutting him open to me and that was unsettling, to say the least.

i got evan to the hospital at 8. his procedure was at 11, but he needed to be there early for an infusion. they also wanted to take his factor level an hour after the infusion, but before the surgery itself, so that they knew he was alright. that's a great idea in theory, but evan has got some of the hardest veins to find. so we ended up with two pokes by the nurses, then called in the iv team (i live mani...she's awesome). but even she had trouble with him and had to poke him twice. we finally got him infused, at 10:15. so it didn't quite leave an hour before the procedure (and lab time) to get the factor level back. it was decided we would go ahead and take a level after 15 minutes.

well, in an effort not to blow e's iv that had been put in his hand, they needed to find another vein to get the blood from. this time, it was the foot. this poor kid. mani got a little cathedar in him and was planning to milk him like a cow to get the blood to come out into the tube. but (in a strange irony) his blood clotted right away and we couldn't get the blood. the hemotologist tok that as a good sign and gave the ok for him to go ahead with the procedure.

***side note for other hemo parents, e's usual dose is 500 IU, but for this we had to go with 750.


the actual procedure itself took just about an hour. it was weird not being able to be with him. even though he was asleep and wouldn't have known if i were there or not. dr. coughlin (the surgeon) came in to tell michael and i that he did great and that we could go back to see him soon. when we got back there he was waking up from anesthesia and was crabby. but he drank juice right away and ate some graham crackers. he was connected to a bag of saline, as he would need fluids for the next 24 hours just to make sure he has enough in his body.

about thirty minutes or so after we went back to see him, we were moved to our room in the children's hospital. we stayed there for two nights, and were able to go home at 8pm on friday night. it was really nice to be home.

now we're on to the next part of this port...which is actually using it. e will start his prophy treatment around 02.18 or so. a nurse from hemophlia of the sunshine state has already come to the house to show michael and i how to use the port on a mannequin. we'll start the prophy treatment with a home nurse, and then transition to me doing them. i never in a million years thought i would be sticking my own child with a needle.

and here are a few pictures from our stay at st. joe's. i feel funny making posts without pictures. so here they are.

well, we're going to put in a port.

i have been waiting to get lab results back before i posted. we have been doing normal level checks and at the last one (after the picc line was pulled) we found that e's level was at 0.6%. when all of this started when he was two days old, he started out at 6%. he was 5.9% a few months later, and then down to 3% at around 1 year old. right before the head bleed he had labs done and he was at 1.1%.

as other hemo parents know, the doctors are always checking inhibitor levels too (well, every six months or so). evan has always come back with a negative inhibitor, but sara (our hemo nurse) is thinking that he has one that just isn't detectable by their measurments.

so michael and i took evan to a consult appointment with the hemotologist on monday where we discussed reasons for the lower levels and what our course of action is. it's speculated that evan does in fact have an inhibitor, but that it is so small that it is not showing up on their tests.

*side note: for those that arent in the hemo community and don't know what an inhibitor is, it is a protein that the body produces that essentially goes and attacks the factor that his body is making, which makes the amount of factor in his body much lower than it should be.

so the reason for the port is for us to be able to give evan prophy treatment somewhere over the course of the next six months up to a couple of years to try and trick his body into not going and attacking the factor anymore. IF (and i say that as a very big if...but only because i'm learning to stop being too optimistic about this disease) the prophy treatment works, then e's levels should be able to go back to their original levels (somewhere between the 3% and 6%) and we would be able to stop giving him the injections three days a week.

if the levels don't change and we are still showing an indetectable inhibitor, then we predict that we will keep evan on prophy treatment indefinitely.

michael and i are taking e to the surgeon's office tomorrow for his consultation and we may be able to get him in for surgery as early as next week on wednesday. this means we'll be in the hospital for three or four nights, so we should be home for the weekend. it's going to be a definite challenge trying to make sure noah is taken care of and brought to school and karate while i'm gone with e. this disease really does affect the whole family...and i wish there was some way i could keep home life normal for noah through all of this. but, he's a pretty cool kid and adjusts pretty well (and really loves his grandparents) so he'll probably be affected by it far less than i am worrying that he will be.

so tell me about ports.

it looks like we may be going that route, and i'm curious about how long it took you to learn how to access it. also about the types of tricks you use to keep your little one preoccupied and what the actual surgery is like.

i am completely speculating at this point, as we are still awaiting some lab results, but i am a big fat planner and would like to know the dirt.

for other hemo parents (well, non-hemo ones too)

i just ordered some really cool padding for the bathtub for e to keep him from hurting himself if (well, when really) he hits his head on the tub. i thought i would share the link in case anyone else is interested.

i also bought an inflatable spout cover from babies-r-us. it was a lot softer than the other spout covers. they offered plastic ones that seemed too hard for his head if he were to hit it. it was only $2 too, which was a very nice bonus =)

and i figured i would add a new picture because i am a shameless AW.

what a long, strange trip it's been

yeah, no...this is not a post about the greatful dead. in fact, i'm not even a dead fan but i was looking through some cd's yesterday and i guess my husband has a couple of copies of that album and the title just seemed to fit the way i have been feeling the past week.

so, since my last post we have been discharged from the hospital. it was found on sunday that evan did not have an infection in his picc line afterall. the first blood culture was probably contaminated and gave a false positive. the second and third cultures grew absolutely nothing. now those that know me know that i'm not really all that in to god (in fact, i don't really know how i feel about god and religion...but that's another post for another time, i suppose) but i swear that there was some sort of divine intervention that lead us to the hospital for when evan had his seizures. and i am so, so thankful that we were there when it happened.

so we spent sunday night and the greater part of monday at the hospital, just waiting to get the all clear from the neurologist to go home. e had an eeg on monday morning and it came back normal, so we were told it as alright to go home. at first, evan was terribly cranky and just not himself. i was worrying that this whole episode had somehow changed him. and i was feeling sad about it. and worried. for those that don't know him, he is just the most laid back kid ever. he's always happy and cheerful and just the sweetest thing ever. seems like he got the very best qualities of both michael and i and shows those traits all the time. anyway, after 24 hours of not knowing who this child was, michael and i thought that maybe it was the increasae in the antiseizure meds that was causing the difference. so we called and spoke to the on-call neurologist about decreasing his dosage from 3ml's back to 2ml's, since the seizure were related to the fever he had. the doctor said to keep the 3 at night but to give him the 2 in the morning, so we took that to mean that we could change them both back to 2. and, sure enough, that brought our sweet angel back to his normal self. seriously, it has made all the difference in the world.

so we were able to enjoy our christmas together, at home, as a family. it was the greatest gift i have ever gotten. honestly. i know its silly to say, but i couldn't have gotten a more special gift. ever. i went from thinking that i was going to lose a child, to thinking that my child was going to be a different child, to having him back to himself and loving everyone and everything around him. and that was something that meant more to me than i could ever really put in to words.

a friend of mine once told me that once you have children you give hostages to fortune...and that they will age you in dog years. and boy, was she ever right.

oh, what a long weekend.

you know, the funny thing about this disease is just when i think we're out of the woods with something bad, something else happens.

on friday afternoon evan had a fever of 101.4. usually i'd just give him some tylenol and let it do its thing, but since he has the picc line any temperature over 100.5 means he needs a blood culture done in order to rule out infection. so i called sara (our wonderful hemo nurse) and let her know and she told me i should bring him in. i didn't realise this meant we would be admitted for at least 48 hours. picture me hearing this in the middle of a public hallway and starting to cry. i really need to work on this emotional shit.

so we are brought up to our room and the nurses take blood cultures and urine samples and start pre-emptive antibiotics. standard care, i suppose...and i'm still infusing him every 12 hours, so i am figuring we will just be here for the next couple of days and then be done. his cbc comes back and the nurse explains that his white cell count looks good and that she doesnt think he's fighting an infection, so we are probably going home on sunday.

the next morning after the shift change, the new nurse breaks the news that there is bacteria starting to grow in his culture, and that it probably means a 10 to 14 day stay here. dammit. it's christmas and we have an older son and what are we going to do? we're supposed to go out of town, but that can at least be put on hold for now. and i immediately start crying. again.

i manage to stop the tears rathar quickly and focus on the fact that my son isnt feeling well and needs to get better. his temp has been in the 101 to 103 range over the past 12 hours (even after having tylenol) and if he's going to be sick somewhere, i suppose this is just the right place.

fast forward about six hours to the scariest moment i have ever had in my life. michael, noah, evan and i ware playing in the playroom. i stepped out to run back to our room to grab e a snack and some milk and i come back to noah scurrying about putting on his shoes. he tells me that michael left with e because something is wrong with him. i figure this is noah jsut being dramatic, so i walk out calmly to go find them. michael is holding evan at the nurses station and when i get up to see him, evan's eyes are rolled up and to the left and his face (and lips especially) are blue.

my baby stopped breathing.

michael handed him to the nurse, who rushed him back to our room. she laid him on the crib, tilted his head back and gave him the breath of life. it took a few seconds, but he started to breathe on his own again and his color started to come back.

i am trying so hard to be a mother to both of my boys at this moment. the oldest one, who is bawling his eyes out because he just watched his brother stop breathing and turn blue. and the youngest one, who just stopped breathing.

and all i wanted to do was puke.

immediately after this happened, evan sat with michael and was just not himself. his eyes would only look to the left. he wouldn't respond to me when i called his name. all he would do is chew on a paci in a way that he never had done before. finally after about 10 minutes he was showing signs of getting back to normal.

when the nurses determined that he had a seizure, they paged his hemotologist and rushed him down for a ct scan. all within about 30 minutes the ct scan came back normal and showed no sign of hemmoraging in the brain. which, of course, is good. but it doesnt explain why in the hell he had a seizure.

so, after all the drama of the evening, michael told me to go home and rest. not that rest was really possible, but i still have a ton of shit to do. laundry to fold. presents to wrap and put under the tree. more crying to do. so i left. reluctantly, but i went.

about forty-five minutes after i got home, michael called and told me that evan had another seizure. same thing as before, but that he was alright. i threw my stuff back together, got int he car and made it all the way back to st. joe's in about 20 minutes.

when i got back, evan was all doped up on atavan and completely asleep. he looked so sweet, and all i could do was press my lips against his cheeks. and, of course, cry. he was moved to the picu where he was to spend the night. michael had me leave, so i drove three minutes down the road to my sister's house and spent the night there.

i came back to hear that evan had an uneventful night, and i was pretty thankful for that news. we spent the day wandering around the picu, seeing things i would prefer to not see again any time soon. eventually we were moved back to the observation unit where we started out on friday. the hemotologist came in and told us that there is no bacteria growing in evan's second blood culture, so they now believe that there is no infection in the picc line. but, since the ct scan showed that his hematoma had reabsorbed into his brain that we should be able to stop the factor and take the picc line out. if he still needs the antibiotics we can give those orally.

so, that is pretty much where we are at right now. except he still has a high fever. it was 103 about two hours after he was given tylenol. the fevers are worrisome, because they are what the doctor believes are causing the seizures. so here i sit, in a bed next to my baby, thinking about sleep but pretty sure it won't really come because i am scared out of my mind that his oxygen levels are going to plummet and they will have to get him breathing again. and then my mind drifts to the "what if" part...and i don't really need to be there right now.

but at least i'm not crying.

we're down to two!

well, i took e to the hemotologist on thursday morning for a factor level draw before i infused him. it was actually pretty cool, the nurse had me flush his picc line and draw his blood. never in my wildest dreams did i ever think this would be something i would do (or be sort of excited about) but it was sort of empowering. it's strange that these sort of milestones make me feel like i am helping evan and sort of defeating this disease.

anyway, his level came back at 51% after 8.5 hours between infusions, so the doctor said he could go to being infused once every 12 hours for the next week. we will go back for another early morning factor draw this coming thursday and if his levels look good we can hopefully go to once a day infusions. selfishly i am hoping for this because my husband and i are going out for our christmas date this coming saturday night and it would be nice to not have to be home by 9. although my mom, who will be babysitting, said that she would infuse evan...i think i would feel better if she didnt have to. only because its the night infusion and i do it while he is laying in his crib and its dark. well, i use a flashlight but whatever.

you know, this whole ordeal has really put a spin on me. i have noticed that i still have trouble eating. my stomach hurts a lot and my mind is always going. i am having trouble sleeping too. but evan can hardly even tell that something so scary happened to him. and he doesn't even really try to play with his picc line. he is one seriously amazing child.

pictures

here are some pictures of evan after he had his eeg. they had to put glue all over his head to stick the little things to. i wanted to get a shot while he was all gussied up, but i sort of forgot. plus i was thinking the flash could mess up his test. so i didnt take any.



here are a couple of pictures of evan and i in the picu. this is after i had about three hours of sleep in a hospital chair the night before. we were up at 5:25 that morning so that evan could have his second ct scan. he was utterly exhausted. i am actually showered and clean thanks to my mom staying with e while i ran down the street to my sister's house to shower.sdf
this picture is typical of how e was feeling while he was stuck in the picu. he was tired and annoyed and just wanting to sleep. the lights in there are so bright that they don't really lend to being able to get comfortable and dozing off to sleep for any real period of time.

this is my mom with evan. she was such an enormous lifesaver to me while i was in there with him. she came home immediately from her thanksgiving trip when i called to let her know that e was bleeding in his head. she was in my hospital room the next morning at 8:30 and stayed with me until my husband arrived that late afternoon so that i wouldnt be alone and would have some help with my little one. she also came back and did it again on thanksgiving day. she stayed with e while i went home to visit with the company that was at our house and so that i could shower and get refreshed. i owe a lot to my mom. she's really awesome.


here is e trying to snuggle up with his favorte blanket. he was dying to find a comfy spot to sleep. even if it meant that he was sitting up in his crib.

and here's evan looking sweet and utterly exhausted. all the poking and prodding really did him in. but he is just the sweetest thing on the face of the earth and he just kept smiling and trying to play and be himself, despite the hell that he was going through. i mean, not only is he being pulled at by doctor's and nurses, and poked more times than i was either time i gave birth...but he has an inner head bleed. that has to cause some decent amount of pain in there. and he's just as sweet and as lovely as ever.


here are the views of e's arms after they tried (unsuccessfully) to put his picc line in with the iv team and his doctor. his right arm doesn't look near as bad as his left does. two days later the radiology team was able to get the picc line put in to his right arm.


and here are the final pictures from our stay. these show e's third iv. this one was a bitch to get in...it took four different nurses, five pokes and over an hour to do. poor little boy has difficult veins to find...and he's so small, so his veins are small. and he is fair skinned, which the nurses told me makes it more difficult to find veins too. this was e's second foot iv, and this time they placed a diaper under the foot so that he absolutely could not walk with this one. we were running out of room to poke him, and losing this iv would not be good at all. so, since he couldn't walk evan wanted nothing but to be pushed all around the hospital floor either in the wagon we used upstairs or in his stroller. this picture was taken shortly before we went to radiology, where the picc line was placed. i was a nervous wreck with him in there. he was under strong sedation, and i knew that his veins were small and close to his arteries (the reason they could not place the picc in the picu the other day). i was completely nervous about an accident happening and something hitting the artery. i am so thankful for the team of doctors that placed the line in him. these people are amazing.

man, what an insane last few days we have had. on tuesday morning, evan woke up cranky and not himself. noah noticed his facial twitching had come back (which had happened a couple of times the week before, but i thought was just a normal twitch) and i could tell that he wasn't quite right. i put him in his highchair and he couldn't lift his milk and wouldn't eat. i took him to the hospital, and on the way his head was twitching in his car seat while his arms bent up at the elbows and him hands laid down looking atrophied. i would periodically call his hame in the car and his eyes would look at me in the mirror, so i felt a little less scared when he did that.

when we arrived at the hospital evan could not lift his head and his shirt was covered in drool. i rushed him in to the pediatric emergency room and within two minutes evan was in a room and the nurses were working on getting advate in him. he was very upset and it took what seemed like a lifetime to get an iv in him. it was probably more like 10 minutes or so, i don't really remember. i do remember the first nurse tried three times, and then she brought in someone else and she got it on the first try. holding him down for all of this was insane. he is pretty little, but so strong.

within a minute or so after the infusion, evan's face was back to normal. he could hold his head up again and open his eye. he was brought in for a ct scan a few minutes later. it took maybe 10 minutes for the results to come back, and the er doctor came in to let me know that there was bleeding in evan's head. he has what is called a subdureal hematoma, which means a bleed in between his brain and the skull. he was admitted into the pediatric icu and we went up there maybe 20 minutes after the doctor told me of the bleed.

once we got to the picu we had all sorts of nurses and doctors in to look at him. we had a team come in and give him an eeg (which is quite difficult to get a 1 year-old to lay still for 20 minutes so that someone can read his brain activity). we hardly slept. poor little boy was so tired, but kept being poked and prodded and moved around. he finally fell asleep tuesday night around 8 while he was in the middle of being checked by the hemotologist.

wednesday morning we were up at 5:25am to have a second ct scan. the neurologist wanted to have the results by the time he came in to see us that morning. i was working on 3ish hours of sleep in a hospital chair and was trying to make sense of what the hell was happening. my mom came to the hospital in the morning and my husband stayed home and got our house ready for company to come then went to work for a bit in the afternoon. i told him not to worry about hurrying to the hospital becaus there wasn't much he could do to help out...and my mom was there to give me a break. i left and showered but couldn't sleep. the doctor wanted to try to put a picc line in evan so that we could infuse at home and be there for thanksgiving. he tried later that afternoon to get it in, but evan's veins were too small and close to his ateries to thread it through. this meant we were stuck there for thanksgiving.

i spoke to the hemotologist in the afternoon as well, and she reminded me that evan is lucky to be alive. she said that she has seen these sort of things before where the outcome results in death. it reminded me just how lucky this little boy is. and how lucky we are that the factor seemed to help him right away. the neurosurgeon also came in late in the afternoon and reminded me of how lucky he was. he ordered us in the hospital until at least friday morning, so the picc line wouldn't have mattered today anyhow. he was confident brain surgery would not be necessary, but wanted to be positive by ordering another ct scan for 5:30am on friday morning.

late wednesday night we were moved from the picu to the regular family suites at the childrens hospital. basically we just moved down the hall, but it felt like such a different place. it was far less restricted and a little more happy (in terms of colors and things to do).

thursday came and went without much of anything eventful happening. i went home for a few hours while my mom came and stayed with evan. i don't know what i would have done without her. i am so thankful that she was there.

friday morning we were up at 5:20 again for another ct scan, which thankfully came back with positive results. the hematoma had not grown and was stable, so the neurosurgeon said we would be able to go home if we could get the picc line in. so at 12 evan went to radiology where they were to attempt to put this in with more sophisticated equipment than they had available in the picu. he was sedated, which made me nervous as hell, and they went to try and thread the catherdar in through his arm and up into his chest. knowing that his arteries are so close to his veins made my stomach turn. if someone made a mistake and hit an artery it meant very bad things for my little boy. thank god whoever did the procedure didn't fuck it up, and e was able to get his picc line without incident. ***side note here that i wish i would have been able to speak with the man who did the procedure because i really wanted to thank him...he did something for our family that means so, so much.***

evan was put into recovery after his line was put in and he laid asleep for a while from the sedation. it took everything michael and i had not to scoop him up out of bed and kiss and hug the heck out of him.

we were told that we would be discharged from the hopsital after evan got his infusion at 5 o'clock. i was to be taught how to do the infusion so that evan can get factor every eight hours for the next two weeks, and then once a day for the following two weeks. i was completely intimidated and a little scared, but i knew that i had to do it. and i did. the nurse was awesome and taught me everything, including how to mix the factor with a needle and syringe in case the mixer doesnt work. she even called me on my cell on my way home to tell me i could give him less heparin than i had in the syringe if i felt i didn't have enough.

i am so, so glad to have evan home. and even more happy and thankful to have him alive. without any sort of brain damage. seriously. i have never felt so close to losing a child in my life, and i hope i never get this close again. and maybe i am not as close as i thought, but it sure as hell feels like it. i would die without my children. and i would die if something happened that changed who they are. i am so thankful for the fantastic medical care we received. especially for sara and kathy, who called me several times on their days off for the holiday to check in on me and my family. these are some very amazing people and i am so thankful to have them when i need them. now i need to find a proper gesture to show them how appreciative i am.

and while i am thinking of it, i have to say (even though they may never read this) how incredibly thankful i am for adrienne, candy, meg, jillian, martha and stacy for their incredible kindness and invaluable friendships. and to my friend meghann, for being totally awesome and coming to bring me coffee and laughter at a time when i needed it most.

i will do a secondary post later with whatever pictures i have of our hospital trip. i know i don't have many, but i have a few.

frustrated.

this is definitely an emotion that i feel a lot dealing with this disease. i feel like i am making real progress in understanding and coping with it all, and then.....nope.

evan had his blood tests done last week. i called sara (the hemo nurse) yesterday to check on his results and she said that his factor level came back all wonky at 0.6% so the lab tech was going to run another level and that she'd get back to me today.

i am thinking this isn't going to be such a big deal, because this has happened once before, and his labs came back at 3%.

yeah, not today. sara called and let me know that they re-ran his factor level and that it's at 1.1%. not what i wanted to hear. not even a little. this can mean many things, but she cautioned me not to get too upset over it...that we need to pay attention to the way his body is acting as a hemo. and that if he isn't having joint and muscle bleeds, that that's a good sign.

but to me...his mom...it's a kick in the face. it reminds me that i need to be more cautious when i pick him up and not lift him under the armpits, but instead scoop him under the butt and have him sit on my arm. it reminds me that i NEED to have him in his helmet all.the.time. no if's, and's or but's. i need to start checking him more for hot spots, or small lumps i may be missing. it means i need to start thinking about the possibility of prophylaxis. it means i have to remind myself all the time that my idealistic view of how my baby was going to be is being broken again.

and the hardest part (for me) is trying to do all of this while not getting sad about it. and while not letting evan know (however small he is...he'll know) that i am treating him differently. special. i mean, he is special...and delicate...but i don't want him to know that. and maybe he would never know the difference, but in my mind i know the difference. and i think i may communicate that to him somehow. and i don't want him to know my frustration of how i have to treat him differently. and its the having to treat him different, not wanting to treat him different, that really pumps my nads. i've always been proud of the type of mom i am. i think i am pretty damn good at it. i have a wonderful older son that is living proof. and to have to alter the things that i have done to turn him in to the wonderful young man he is makes me mourn a loss of something that never really existed with evan. and i suppose that makes me mad too.

on the bright side, there was no evidence of an inhibitor. so i guess i will have to take what i can get.

ugh...hemophilia anxiety.

so i spoke with the head nurse at the hemotology clinic yesterday and she said she'd like the have E come in for a check-up. i didn't think it was that big of a deal until i spoke to her today. apparently he needs to have blood drawn for a factor level and an inhibitor check. and then she rattled off some other tests the hemotologist may want to order, but i don't really know what they're for.

i hate, hate, hate that he has to get poked. it is pure torture to watch them put the needle in his arm. even if he doesn't cry or get fussy, i still hate it. and the worst part is having to pretend like i'm all happy and like it doesn't hurt that much. and that i am always by myself for this shit. and its hard to be strong for evan when i feel weak and vulnerable at these appointments.

so, here's hoping to only one stick and no inhibitors.