i dont even know where to start..
i guess i’ll go in order..
the same week the repo man came to take my car, tim lost his job.. got fired i should say, for being stupid.. now i am not working yet because i was supposed to be going back to school.. and really i was in the process of finding a good daycare for jj, and looking for a job, and blah blah blah.. i didnt do it quick enough and yes, it is my damn fault for letting him be the only one to work, and trusting that he would take care of things.. NO.. we are not together.. but we had talked and things WERE going good with us living together so as long as it was working i was going to stay home with jj, and finish school, and we would take it from there.. well, as soon as things started not going so well, i started the job/daycare process.. but like i said, i didnt do it quick enough.. my fault.. ill take that blame.. so needless to say, that job that he lost was the ONLY source of income.. yea.. not good. .. there are so many more details that go with this that would make the story make sense.. but i dont have the energy to put it all out there right now..
and it seems it has been down-hill from there..
jj got sick.. major ear infection and was in the ER not once, but twice because he had an allergic reaction to the amoxicillin that they gave him for the ear infections.. we got him on zithromax, and luckily he got better..
2 days after jj’s second trip to the ER, kira woke up at 130 am SCREAMING bloody MURDER that her ear hurt.. im not kidding.. i thought someone broke into the house and was stabbing her…. back to the ER.. it was friday night.. there was no way i was waiting till monday to take her to the doctor. so.. the ER says she has an ear infection that is so bad that they cant get drops in, but sent her home with a z-pack and said that would take care of it..**this should have been a red flag for me.. again.. dumb on my part.. but i’ll deal with that later** she had also been complaining of her neck hurting.. they took an x-ray and said they saw nothing..
fast forward 24 hours on antibiotics and pain killers later.. sill screaming in pain.. neck now so swollen she cant move it.. i called robby and said “i think we have one more er visit in us”.. so he came and brought us back to the hospital… before i left, i looked up her symptoms and i was already pretty positive of what she had, so going in, i demanded they do a CT scan rather than an x-ray.. blood work showed her white blood cells at 22, 000.. (VERY HIGH). and the CT scan showed, what i had expected, mastoiditis.. and infection in the mastoid process.. a honey comb like part of the skull behind the ear.. IV antibiotics can sometimes take care of this, but it most always needs surgery. They started kira on antibiotics while they arranged the ambulance to the childrens hospital, about an hour away in pittsburgh..
she of course had an allergic reaction to the vancomyccin (sp?).. but luckily we were in the hospital so they took care of that.. 16 hours and 10,000mg of antibiotics later, we are finally admitted into the hospital for what i didnt know at the time would be the LONGEST and SCARIEST week of our lives..
TEAMS of doctors were pouring in.. poking, prying.. the ENT team, the Infectious disease team.. later the Neurosurgery team (reading that on the coats as they walked in scared the shit out of me).. anyway.. they put kira on morphine for pain.. this drug turns her into DEVIL child!.. i can not even explain to you.. she was a totally different child then i have ever known.. and it wasnt because she was in pain.. kira+morphine.. NOT GOOD!.. but it was taking away her pain, and they said that it was the only thing that would..
surgery number one.. tubes to drain her ear.. this is a very simple surgery that kids get ALL the time.. the only concerns were because she has asthma and had a slight cold.. so they said the anesthesia might make her breathing funny..but it was nothing to worry about, and we were in good hands.. and we were.. everything went fine.. and we were told that they would give the antibiotics 2 days to try and take care of the infection before they did a second, much more complicated surgery. this was tuesday mid-morning.
for the rest of tuesday, kira slept a lot, ate a little, and was still in great amounts of pain..
4am wednesday, NPO orders were put back on (no food or drink).. this scared me because i knew at that point they were going to do the second surgery, but i was confused because i thought they were waiting until thursday to give the antibiotics a chance, and she only has to not eat or drink for 12 hours before the surgery… 7am the ENT came in and told me that they didnt like the way the swelling was not only not getting any better, but was actually getting a lot worse, and moving down around the front of her throat, and that they would be doing another CT scan, and definitely the second surgery
MASTOIDECTOMY.. removal of part of the mastoid process.. basically they were going to cut her open behind the ear and drill out the infected portion of the bone..
i am trying desperately at this point to hold it together.. as of wednesday, i had been at the hospital alone with kira since saturday night.. remember we have no car so tim is an hour away with jj.. and no way to get up there. mom and dad are in florida.. i am ready to LOSE it.. but pulled up everything i had to keep it together for kira who was PETRIFIED just from the very little she overheard the doctors saying. dont get me wrong.. the doctors, surgeons and nurses at this hospital were AMAZING at comforting and explaining everything the best they can.. but its still scary for her.
mom had had enough of being so far away at this point also and booked a ticked to come up thursday morning.. (mom is coming.. thank GOD, i think to myself).. and when everyone heard that she was going to have this surgery, a small army of people came up to the hospital wednesday afternoon to visit, and support, and keep kiras mind off the surgery that we knew was coming at some point that day.. i took this opportunity while they were in the room to go outside for a good 15 minutes and virtually LOSE everything i was “holding together”.. i am so thankful for them..
at this point we are all just kind of hanging out in the room.. kiras and her friends coloring, watching tv.. and kind of forgetting they were in a hospital.. this was so good for her…
well.. this is when the white coats walked in with “NEUROSURGERY” embroidered on them to give us the results of the CT scan that was done earlier.. my heart has never dropped so far, or so fast. everyone just got quiet and listened.. the infection was not only in the mastoid bone, but was now between a plate of the skull, and her brain.. and had to be removed while they were doing the mastoidectomy.. surgery was scheduled for 7..
i left the room and made all the “update calls”.. and started to pray.. yes, i actually prayed.. my babygirl has an infection on her brain and is about to be operated on.. how the hell did this happen? My ballerina.. it was literally a battle with the positive and negative thoughts zipping through my head.
7 came and went and they finally called up for her around 830..
they let EVERYONE walk her down to the OR and stay with her until she was ready to be put under..
the walk to the or was long.. but i looked around as we walked.. tim walking beside kiras bed holding one hand.. kiras friend miranda on the other side.. jenny, felicity, and mirandas sister mikayla right behind..then lindie.. miranda and mikaylas mom, and robby holding jj.. and me… a small village of big love..
3 hours later the surgeon walked into the waiting room.. “everything went great”…. no three words have ever made me so happy.. happy isnt even the right word.. it was like someone had been strangling me and the attacker just let go of my neck..
they were able to get all the infection out and said that its just a matter of healing and continued antibiotics now..
kira did NOT like waking up from anesthesia.. she was in a lot of pain, and very confused, as im sure anyone would be..
wednesday night went well.. kira slept pretty good because she had so much in her from the surgery.. she was pretty close to pain free.
thursday came.. it was back to just kira and i .. and mom was on her way.. we were both very happy about this..
thursday morning the infectious disease team came in to let us know that the cultures taken from the tubes surgery had grown staph. it was good that the infection had at this point been removed, and they were waiting to find out the exact strain to decide what antibiotic to keep her on.
turns out it was MSSA, not MRSA.. the difference is that second letter…. S is sensitive to antibiotics.. R is resistant.. so this was very good news..
so.. they put her on Levaquin (good stuff) and said that she will need to go get a picc line in (more permanent type of IV) to come home with because she would be on it for a minimum of another 5 weeks. no gym, no dance, pretty much nothing to make her blood pressure go up as long as the picc line is in.. but compared to the alternative, we’ll take it..
the next four days were just making sure swelling was going down and she was taking to the antibiotics well..
monday we were released and finally came home.
its been almost two weeks since we have been home and all is going well.. every morning at 730 i hook up her IV and she sits for an hour, getting the lovely liquid that is saving her life..
she loves to tell people that the doctors sewed her ear back on, and she cant wait for the stitches to dissolve so she doesnt have to feel them anymore. Kira also loves the fact that she gets to wear tube socks over her arm to cover the picc line..we got lots of pretty colors : )
Kira is a trooper.. in 9 years, she has been through more than i have in the 28 years i have been on this earth.
as soon as she is well and off the antibiotics, the Doctors want to start some studies to figure out why she is so prone to infection.. so we will cross that bridge when we get to it.
march 3rd is her follow up where we will find out exactly how much longer she will be on the meds, and how much hearing was lost in the ear.. i’ll keep you posted..
i also need to say that i could NOT have been so strong for my little girl if it wasnt for all the thoughts, prayers, and support from my friends from all over this country.. i am SUCH a lucky girl to have all of you…. you have no idea how much you mean to me.
my arms are numb.. i’ll hit on the rest of the subjects in the title tomorrow….