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.



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.