by, 05-Nov-2010 at 21:16 (1048 Views)
(I am sorries ahead of time incase I am too wordy... and ill try not to be a total toddler with my typing this out... so grammer people donít get mad at me haha)
This blog is to explain things and to answer about where I have been the past while. Long story short I have been in the hospital since the 29th of October and be aware I am still on drip morphine so donít expect the most competent thoughts out of me Iím trying my best! My surgery was pushed up substantially after some of my hardware in my fusion broke causing pseudarthrosis. In short my spinal fusion failed... which was a risk I had to take when being forced to undergo the original procedure when I was 6 years old. This was my third procedure, my second occurring when I was 12 years old. This one was definitely the hardest on me ďbeforeĒ the surgery emotionally. When I was six I was already in La La land so my big emotional struggle was post surgery... and when I was 12 there wasnít any major complications involved so i was more settled and I didnít have to be as afraid.
There was a few main issues involved in this surgery:
1. The Pseudarthrosis it self
2. The broken hardware and the removal of it
3. I have been having symptoms of non-ishemic cardiomyopathy which havenít properly been pinpointed yet and caused my body to have difficulties leading up to and especially during the surgery which skyrocketed my risks Ė normally, a worst case scenario is usually paralysis or the 5-10% chance of infection however due to the N-I C... there was actually a strong possibility of me not really making it though the surgery or post surgery in the days following(varying risks including whatís termed as ďsudden deathĒ.
Anyways so my parents pretty much had everything I needed ready to go by the 29th when we headed out. Itís about an hour and 15 minutes with no traffic from our home to the hospital I had to be at for my surgery. I was definitely clenching poor Mister Fluffers(my plushie and buddy) something fierce as we headed there. I still had to deal with painful withdrawals from the heavy medication I had been going through so most of that day was a struggle and my memory of it is pretty fragmented. (Anyways also for those who donít know I was wheelchair bound ((now technically Iím bed-bound while I heal then... who knows.)
Anyways, aside from having a near panic attack, chomping through one of my pacifiers, and squeezing the life out of poor Fluffers thatís about all I really remember of October 30th, it was a fairly early morning prep and then good night me. Now, Iím kind of shy about going into details about how I was doing emotionally but... I mean you know the risks... however; I will say that knowing 10 days in advanced hurt and helped. It gave me an opportunity to say goodbyes... and make my resolve, its truly a morbid thing to think about but as much as there was sadness... the day of I truly felt a strong sensation of calmness so... Yeah.. I also reframed from showing my colors on the forums because:
ē I donít want to be a downer.
ē I donít want to drag others into my problems.
ē I didnít feel comfortable sharing everything with a wide audience yet I guess... a lot of it was a big internal battle for me so if some people are upset that I didnít share I am sorry...
Anyways, I was completely in La La Land until the third of November which I have very basic memories of and it wasnít till the 4th that my marbles were back into place. Towards the surgery itself the procedure basically entailed removing the broken hardware, readjusting the fusion, replacing with new hardware and allografting new bone into the fusion. For those who do not understand this is bone from a bank, an autograft is bone from the person but they had to take additional risks to compensate for my struggling body. Added blood loss/trauma would have drastically increased the risk to my cardio stuffs and it would be good bye Chiharu. Some of the risks they took doing this included added risk of infection, lack of compatibility etc, however so far so good.
I have been feeling pretty tired so far... and woozy, and foggy, and numb like hell... and my emotions have been a little staticy at the start but Iíve calmed a lot. Fusions are a pretty slow process overall, itís too early to tell how things will sort out so for now Iím just taking things one baby step at a time.
Towards a more personal blog of my feelings and time over the past few days, Thursday was an interesting day. I have started to eat again... which was alright, but I was hungry enough that even hospital food tasted okay, but even that didnít last quickly. My mom was here on Wednesday alone and Iím really grateful because she helped me as my thoughts came together. I remember, Iím not even really sure what time of day it was but was whining a bit in kind of a drug educed ďBlaaĒ and she slipped my pacifier in my mouth and it really helped calm me a lot and pull myself together. As much as people are like ďoh nos what if my parents find out im a tbĒ the amount of help itís given me, and support my parents have provided through my health difficulties has really given the extra leap to keep my hamsters running ^^;. Anyways, Thursday was fun because my whole family came to visit and they brought food, woohoo! My flowers were pretty nice they smelled super cute, and gosh I really like lavender :3
Anyways, it was great talking to them but I did run into some slight trouble. It was getting late and we realized I was running low on bambinos (like 8-9 left) And if your incontinent then you sure know that means trouble! @_@ However, my size rescued me because being tiny, and having a 19Ē waist, my mom was able to pick up a pack of cruisers size 7 nearby. Let me tell yea though, this discovery rocks because through random trial and error... Abenas ďAbri-let booster normalĒ fit the contours of a cruiser really well(adds about 2 full wettings worth of protection... now for those of you ďboys and dls who have a strong fascination with pampers... understand that I am like 90 lbs soaking wet so my bladder isnít huge so donít make my scale the same as yours lol), adding enough absorbency to make it a viable incontinence option for daytime use on us ďyouth sizeĒ labelled people... which I canít argue with because it looks kaawaiii. So what I have been doing with my currant supplies is the pampers: day time- and bambinos: night time. ((Honestly, Iím quickly becoming very happy with this combination because tranquility ATN really pushed the ďIím disabledĒ label onto me and Iím still trying to step away from that stigma because being a TB is how I cope... specially since all this stuff has forced me further to having to grow up and be a big girl when I donít really want to )
Anyways, other interesting things includes my experience with the nurses... Yeah, it can be emotionally stressful sometimes coping with 20+ people seeing you exposed over the duration of your stay but I find Iím building some kind of fun bonds with people... maybe my staff is really nice. Anyways, I just want to put out a thank you to all the kind nurses out there for the things you do and the extra steps you take to comfort people. I donít want to name my hospital, or where I am but itís been pleasant. Some of the things I would like to recognise is:
1. The gentle care provided, taking great consideration in what pain Iím having.
2. Respecting me for my rather babyish attire and stuff... I have been sporting some... not so big girl attire.. including pacis... cartoon jammies... etc and they have been really nice about it which is cool.
3. Also, to the spunky nurse who put a baby diaper on Mister Fluffers while i was sleeping... :O youíre a silly lady! But I like your style D: lol
4. And finally, this morning, towards the nurse who brought me a dish of homemade Egg Fuu Young... @_@ THANK YOUUUUU <3 for rescueing me from hospital food because my parents are away today and cant visit.
(Anyways, I just felt that I should share that, even though thereís a 99.9998% chance they will never see this, I said thanks lots in RL too but yea... haha.)
Finally, to wrap things up, I am doing sort of kinda okay overall and I do my best to keep my head up. My level of paralysis has shifted somewhat but I canít tell if it is my medicine or something else but the doctors said a big part of it is my fusion is settling so ill bite my lip and hope my way through it. As of right now, I canít feel my left foot anymore, and most of the left leg is numb but reacts(Unknown if permanent or not). My right leg is about the same as before. I canít comment on my pain because Iím still high as a kite however i do know that as they ween me off this love juice that is morphine... lol... I have been told that they want to shift me to a combination of Lyrica and Doxepin to address my severe sleep deprivation from pre-surgery and also manage my main as or more efficiently so fingers crossed. My next big step over all... Get out of the ICU and into a calmer wing... where i donít see my heart on the monitor next to me... and loose the IV perhaps!