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.



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.


as promised...

e's new helmet came in on monday. it is fantastic. better than i could have ever imagined. its soft and cozy and he has hardly tried to take it off. i know its sort of silly to get so excited over a helmet (that my husband still can't come to terms with him having to wear) but i find that with this disease, in order for me to truly accept and embrace it, that i need to get excited about the little things. and i am excited about this. he looks so freaking cute in it that i can't help but kiss him a million more times than i was already. seriously, he is just the most beautiful thing ever.