why would i say this? it's simple...i am a truthful person, thats why. this past monday i had to take evan to the er (again!) for yet another head injury (in the same spot as it was the monday before). anyway, when i was getting evan into his "room" at st. joes some arbitrary nurse comes in to ask what happened. i give her the run through of how he was scooting a plastic pitcher across the kitchen floor and he lost his footing and kinda slid over it and (i assume) hit the kitchen floor (it could have been the edge of the pitcher, i don't know...i was making dinner).
anyway, this lady looks at me with this stern, frigid face and asks me if he has a helmet. i tell her yes, but that he doesn't wear it often. in this nurses head, she thinks this is the perfect opportunity to school me in mothering and tells me that she has seen many hemophiliacs die from head injuries and lack of a helmet. i wanted to punch her.
now, i know that i should be more diligent about this. i know. but he was playing on the kitchen floor. he wasn't running around the block. he wasn't skateboarding. he wasn't jumping off the banister. he was on the kitchen floor. playing with plastic pitchers. not mallets or knives. plastic. pitchers.
and who says that? seriously. do they not give some sort of nurse tact class in nursing school? because i think they should. hell, i would even chair it up to keep stuff like this from happening. i felt bad enough as it was...the last thing i needed at that very moment was some random woman telling me that i suck at life. it's difficult enough being in the emergency room for the second time in seven days, by yourself, with a little baby that is about to endure the pain of several needle pokes plus another ct scan.
i'm still annoyed by this. i need to let it go.
in other news, i have had evan in his helmet every day since. even if he is on the floor, playing with plastic pitchers.
9.20.2008
farewell, foreskin.
in an effort to get caught up on evan's past 14 months, i'll start with our first hemophilia hump. the circumcision. we knew we wanted to have him cirumcised, but since he was diagnosed with hemophilia my ob declined to do the procedure. so, off to the pediatric urologist we went.
e's circumcision came right around the time he was 7 weeks old. the wounds were still fresh from his diagnosis, and this simple 10 minutes procedure landed us a two night stay in the children's hospital at st. joe's. since it was being performed on a monday morning and michael had to work, i was at the hospital overnight by myself on sunday and monday. michael drove with me to the hospital on sunday evening and we checked in. he stayed with me while they put e's iv in and left around 10:00 that night. i was breastfeeding and evan was still so little...and they told me i couldn't feed him after midnight. i was dreading the night with him, alone in a hospital where i couldn't nurse him to calm him down. luckily he nursed right before midnight and didn't wake up again until 4 where i gave him a paci and he went back to sleep until around 6. his appointment was at 8, and he did pretty well with not eating.
i brought him downstairs and checked him in with the urologist. he showed me the board with straps that evan would be put on while they did his procedure. the whole time they are explaining this to me, i kept asking myself what in the hell we were doing making him go through this. so little and helpless being strapped to a board. so i left and went to get a coffee. i knew when i got back that they would be finished. i didn't want to be within earshot in case he was crying. i was already in a fog from lack of sleep, post-partum emotions, and the freshness of his diagnosis. i didn't need anything else to possibly tip my scales.
i came back a little later to pick him up...he did great (well, that's what they told me anyway). now he could nurse and sleep and be infused every 8 hours for the next 24 hours just to be sure he would clot up. i was going to try to get a little sleep, but that didn't work so well.
being at the hospital with him was hard. it was difficult to see all the little kids that had been there for weeks...some of them months...with their own linens in their rooms to make them more comfortable. kids with cancer and other horrible diseases that were making them weak and sick and probaly unable to see their next birthdays. and then there was me...a mom with a baby whose disease was managable. it isn't likely to kill him...and there is so much hope for him to have a totally normal life. it made me feel a little better about it, though i felt guilty for feeling that way with all these other kids around. not that i was sharing these thoughts with them...but it was still so sad.
my mom brought noah to visit us that afternoon. and then my dad came, too. and michael came after work and brought dinner for us. it was so good to have people there...and made me miss being home. i just wanted to be at home...in a normal setting...with our new baby. but we weren't. and i remember feeling the unfairness of it all. again questioning why this had happened to our son. the questioning and crying didn't do any good though. and i knew it wasn't going to change the diagnosis. so i kept telling myself to stop. as hard as it was to do that...i kept trying.
the next morning we were able to leave...though not until around 11. i was so happy to leave. it was just one hurdle that we had gotten over in our new relationship with this disease. and it turned out alright. while we were there, the doctors drew blood from evan to check out his factor level. we got the results back that he was at 6%...this was fantastic! it meant he was in the mild range, and we were so thrilled to hear this. we have since had him retested (twice) and found that he is at 3%, putting him in the moderate range. still not bad...but not as good as we thought it was.
anyway...we got to go back home, as a family, to keep figuring this thing out together. and it was great to get back there.
e's circumcision came right around the time he was 7 weeks old. the wounds were still fresh from his diagnosis, and this simple 10 minutes procedure landed us a two night stay in the children's hospital at st. joe's. since it was being performed on a monday morning and michael had to work, i was at the hospital overnight by myself on sunday and monday. michael drove with me to the hospital on sunday evening and we checked in. he stayed with me while they put e's iv in and left around 10:00 that night. i was breastfeeding and evan was still so little...and they told me i couldn't feed him after midnight. i was dreading the night with him, alone in a hospital where i couldn't nurse him to calm him down. luckily he nursed right before midnight and didn't wake up again until 4 where i gave him a paci and he went back to sleep until around 6. his appointment was at 8, and he did pretty well with not eating.
i brought him downstairs and checked him in with the urologist. he showed me the board with straps that evan would be put on while they did his procedure. the whole time they are explaining this to me, i kept asking myself what in the hell we were doing making him go through this. so little and helpless being strapped to a board. so i left and went to get a coffee. i knew when i got back that they would be finished. i didn't want to be within earshot in case he was crying. i was already in a fog from lack of sleep, post-partum emotions, and the freshness of his diagnosis. i didn't need anything else to possibly tip my scales.
i came back a little later to pick him up...he did great (well, that's what they told me anyway). now he could nurse and sleep and be infused every 8 hours for the next 24 hours just to be sure he would clot up. i was going to try to get a little sleep, but that didn't work so well.
being at the hospital with him was hard. it was difficult to see all the little kids that had been there for weeks...some of them months...with their own linens in their rooms to make them more comfortable. kids with cancer and other horrible diseases that were making them weak and sick and probaly unable to see their next birthdays. and then there was me...a mom with a baby whose disease was managable. it isn't likely to kill him...and there is so much hope for him to have a totally normal life. it made me feel a little better about it, though i felt guilty for feeling that way with all these other kids around. not that i was sharing these thoughts with them...but it was still so sad.my mom brought noah to visit us that afternoon. and then my dad came, too. and michael came after work and brought dinner for us. it was so good to have people there...and made me miss being home. i just wanted to be at home...in a normal setting...with our new baby. but we weren't. and i remember feeling the unfairness of it all. again questioning why this had happened to our son. the questioning and crying didn't do any good though. and i knew it wasn't going to change the diagnosis. so i kept telling myself to stop. as hard as it was to do that...i kept trying.
the next morning we were able to leave...though not until around 11. i was so happy to leave. it was just one hurdle that we had gotten over in our new relationship with this disease. and it turned out alright. while we were there, the doctors drew blood from evan to check out his factor level. we got the results back that he was at 6%...this was fantastic! it meant he was in the mild range, and we were so thrilled to hear this. we have since had him retested (twice) and found that he is at 3%, putting him in the moderate range. still not bad...but not as good as we thought it was.
anyway...we got to go back home, as a family, to keep figuring this thing out together. and it was great to get back there.
9.19.2008
so this is my first post.
well, this is quite a step for me. my very first post on my very own blog. it's sort of strange to me...sharing my thoughts and feelings about something so personal for anyone to read. not that there is much that i keep to myself, but it's the voyeristic part that sort of weirds me out. i guess it's just the venture in to uncharted territory that has me scared and excitied and nervous all at the same time.
so, welcome to my world. pull up a chair. enjoy your time here. feel free to comment, or ask questions, or tell me i need to stop whining. not that i anticipate much whining...i'm not really the whining type.
and here i go...the beginning of our journey with hemophilia. evan was born on july 3, 2007 at 4:11 pm. it was a dream birth...so easy. in fact, too easy...my doctor missed the birth and a doctor from a totally different practice was pulled out of the hall to deliver our little guy. he was so beautiful...so sweet...so perfect. michael and i enjoyed our stay together with evan in the hospital, but were eager to get home.
on the morning we were supposed to leave, a nurse came in to check on me. as she was leaving, i noticed e's ankle bracelet had fallen off of him and was laying on my bed. the nurse offered to put it back on him on her way out...and when she did, she noticed his pants were soaked in blood. she whisked him off in his bed down to the nursery to try and figure out what was wrong with him. it took nearly an hour to get the bleeding under control (which was all caused by his pku test). the nurses called the nicu doctors in to help, and they immediately suspected hemophilia or von wildebrand's disease. a couple of hours (and several tests) later, dr. wynn (the on call pediatric hemotologist) came to my room to explain to me what was wrong with e (michael had left to go home for a bit and was on his way back to the hospital). i was in complete and utter disbelief. honestly, i still cannot describe the sadness and confusion i felt that day. i didn't understand why my son had a genetic disease when there was no history in our family. i couldn't figure out why he got this disease. i felt myself racing in my mind to find a reason...trying to think of something i could have done differently while i was pregnant to have changed it. i felt a lot of guilt...and a lot of sadness. thoughts of ryan white raced through my mind, and the idea that my child could be infected with hiv while being treated for this disease like he was brought me to tears.
but i went to the nicu and stared at my brand new son...who had an iv in his scalp...laying there looking perfect and completely unphased by what was going on (which, i mean, he had to have been...he was only 48 hours old, but still). he was still so sweet, and so beautiful and so perfect...and i decided that i wasn't going to let this define him.
so, fast forward to now. 14 months later. and he's still perfect. in fact, more perfect than i could have ever imagined. and he's going to be alright. and i'll write all about his first hospital visits...but not now. i think my first post is long enough.
so, welcome to my world. pull up a chair. enjoy your time here. feel free to comment, or ask questions, or tell me i need to stop whining. not that i anticipate much whining...i'm not really the whining type.
and here i go...the beginning of our journey with hemophilia. evan was born on july 3, 2007 at 4:11 pm. it was a dream birth...so easy. in fact, too easy...my doctor missed the birth and a doctor from a totally different practice was pulled out of the hall to deliver our little guy. he was so beautiful...so sweet...so perfect. michael and i enjoyed our stay together with evan in the hospital, but were eager to get home.
on the morning we were supposed to leave, a nurse came in to check on me. as she was leaving, i noticed e's ankle bracelet had fallen off of him and was laying on my bed. the nurse offered to put it back on him on her way out...and when she did, she noticed his pants were soaked in blood. she whisked him off in his bed down to the nursery to try and figure out what was wrong with him. it took nearly an hour to get the bleeding under control (which was all caused by his pku test). the nurses called the nicu doctors in to help, and they immediately suspected hemophilia or von wildebrand's disease. a couple of hours (and several tests) later, dr. wynn (the on call pediatric hemotologist) came to my room to explain to me what was wrong with e (michael had left to go home for a bit and was on his way back to the hospital). i was in complete and utter disbelief. honestly, i still cannot describe the sadness and confusion i felt that day. i didn't understand why my son had a genetic disease when there was no history in our family. i couldn't figure out why he got this disease. i felt myself racing in my mind to find a reason...trying to think of something i could have done differently while i was pregnant to have changed it. i felt a lot of guilt...and a lot of sadness. thoughts of ryan white raced through my mind, and the idea that my child could be infected with hiv while being treated for this disease like he was brought me to tears.
but i went to the nicu and stared at my brand new son...who had an iv in his scalp...laying there looking perfect and completely unphased by what was going on (which, i mean, he had to have been...he was only 48 hours old, but still). he was still so sweet, and so beautiful and so perfect...and i decided that i wasn't going to let this define him.
so, fast forward to now. 14 months later. and he's still perfect. in fact, more perfect than i could have ever imagined. and he's going to be alright. and i'll write all about his first hospital visits...but not now. i think my first post is long enough.
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