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.

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.

not for the squeamish.

so i finally uploaded some photos today and realised that the pitctures that i took from the hospital visit that prompted me to start this blog have yet to be shared. they tell the story of what e goes through at the er better than i ever could. except that i forgot to bring the camera in with me for the ct scan and didn't want to look like a total ass and leave to go and get it. i guess those will have to wait for another day.

this is the nasty lump-bruise about 15 minutes after e smacked his head on the floor. for a frame of reference, he was sitting on a padded square tray that is part of a storage ottoman that was sitting on the floor. its about three inches off the ground. he fell forward and didn't catch himself and hit the kitchen floor with his forehead. well, at least i think that is what happened. i was cooking dinner at the time. this bruise was instant.

this is part of what happens in the triage area. there is a nurse that takes his pulse and blood pressure, and gives him is ankle hospital bracelet. they also take his weight, but i forgot to snap a picture there too.


since e's fall happened right at dinner time, we had to improvise and eat at the hospital. so here he is in his stroller, waiting for his meal of raisins and mozzarella cheese. and, of course, with his cup of milk. one good thing about our shipments of factor to our house is that they come packaged with these awesome ice bricks that stay cold for about 24 hours. so i throw those in the bag when we go to st. joes to keep things cool for him. you can also get a better sense of the color of his bruise here. the light in the first picture from home made it look a little lighter in color.


here are the nurses getting ready to stick evan and give him his factor. they are so good with him. and don't mind at all that i have my camera out. they didn't even ask me not to get them in the picture. the nurse in the back just fell in love with him.


and here they are searching for a vein. poor baby has difficult ones to find, just like his mom.









and we have entry! the vile of clear liquid on the left is his factor. with this particular vein they only got about a third of the factor pushed through before the needle somehow left the vein and they needed to go and poke him again in order to push the rest of the factor.


here is the spot of blood that was on e's inner elbow when they took the needle out. i look at this picture and i want to yell at his blood and tell it to shape up and work like it's supposed to and we won't have to do this anymore. unfortunately, it doesn't listen.


in this picture they are pushing more factor. they had to put the needle in his wrist, and i could barely bring myself to look at it, let alone photograph it. it was very painful for e, and he squirmed quite a bit and the needle dislodged again. so it was off for another site, giving us poke number three.



the third and final poke was in the top of evan's left hand. the nurse really didn't want to do it there because she noticed there was some scarring from times that he's already been poked there. and she's afraid that it will be more difficult to get to the vein.

and this is how he feels about the poking. i can't say that i blame him.


and finally with the last poke they were able to push in the rest of his factor. they seriously were so great about it. and it only took about three minutes total. but it's amazing how long those three minutes can feel when you are watching your baby go through stuff you never dreamed he would have to.


and here is evan with the last poke. i debated posting this picture or not. but it says so much about how he feels. and about how i feel too. this disease is hard. i mean, its managable and i am so thankful for that. but it's difficult to understand why he has it. it's trying to change your idealistic views of how you would raise your children when you are affected by something like this. it is sad to think about the things that could happen as a result of one simple accident when you are dealing with someone whose body just can't do what ours does.

i am getting better all the time with his diagnosis. but some days i feel like it's a one step forward, two steps back kind of equation. today my husband and i took evan outside to play and he was walking on the driveway and the sidewalk and i was beside myself with tension and fear that he was going to fall and hurt his head. or skin a knee. or scrape his foot. or an elbow. and it's those types of feelings that get my stomach in knots. because he's a kid. and they're going to get hurt. and i need to control the way my tension and stress might affect him. and by affect him, i mean the things that i automatically don't want to let him do, but that logic tells me he needs to do in order to grow.

but, he is the sweetest most loving baby in the world. and i know he gets good care when he needs it. and i know that we love him so much and that he will feel that always. even if we have to crush his dreams of becoming some sort of professional WWE wrestler.