Sorry I've been horrible about keeping up the blog. If it's any consolation it is because I've been feeling so well I've been out living my life and hardly thinking about my "little surgical setbacks." Paul and I and the boys have been greatly enjoying our new backyard and the slightly cooler weather. I spend most of my days in a hammock watching them play baseball, soccer, swinging, jumping on the trampoline or driving their motorized John Deere Gator around the yard - sounds terrible, doesn't it?!? (I'm telling you, I'm convinced I'm Houdini and getting away with a major heist!)
The surgery went very well! When they went in they said I had no measurable flow of cerebrospinal fluid (CSF) at all below my T1 vertebrae, that it was completely blocked off and still - which was not good. They also said all of my spinal cord nerve roots were bunched together by arachnoid adhesions and tethered in many places to the wall of the spinal canal, in addition to the main adhesion of the filum terminale. They also saw the tumor, which was larger than they expected and had several nerves adhered to the outside of it as well as one going right through the middle of the tumor. (so much for the doctors in Austin who said it wasn't intradural and certainly wasn't touching any nerves - PLEASE, PLEASE, PLEASE talk to me if you need a neurologist or neurosurgeon before going somewhere in Austin! I could tell you some very frightening tales...)
Anyway, they removed all the adhesions without incident. On average when they cut the filum terminale a person's spinal cord will rise around 5 mm, mine rose 5.2 cm (yes, centimeters)! They said it shot up like a rubberband. They had to do 3 more laminectomies to get the entire tumor and they said it was a very delicate procedure b/c they had to take a tiny piece at a time so as not to damage any of the nerves it was attached to...which they did perfectly.
The day after my surgery they let me stand and walk a couple of feet using a walker with someone on each side of me. The next morning they woke me up for meds around 6 am and I couldn't fall back to sleep so I grabbed the walker and stood up on my own (luckily Paul wasn't there - I had a shared room, so no sleepover guests - b/c he would have shot me!). I shuffled out my door and walked for about 30 minutes, then, like the biggest Christmas present under the tree, stood a coffee machine! Then it hit me like the disappointment of a child realizing it's not their present when I deduced that I could not carry a cup of coffee with my stupid walker. What an unfair world I live in. I walked my crippled self back to my room as fast as I could, ditched the walker and shuffled all the way back to the coffee machine in the adjoining tower like I'd never been under the knife. And, so began my speedy recovery!
On my caffeine journey I met another woman my age with EDS who had just undergone the same surgeries at nearly the same times, only in reverse order. She had equal determination, the same dopey stupor and addiction to coffee - It was friendship at first sight! We hobbled down the hallways together for several hours a day after that. Soon, if I wasn't in my room, my meals were delivered down the hall to Darla and Sally's room - such service! Our nurses made us write our cell phone numbers down for them and leave a note letting them know where we'd gone so they wouldn't have to call some "patient flight code." My nurse even told me I was the only patient she'd ever had that she had to chase around the hospital to give me my pain medication! I guess so much of it is perspective, and I am physically SO much better off now than I have been in over a year.
I am so blessed to have such a loving husband who has been by my side through this journey. I cannot imagine what it must be like to sit in the neurosurgical waiting room for hours upon hours waiting to hear how your spouse made it through surgery and then seeing the immediate aftermath - which is terrifying and SO not pretty. And seeing your spouse with two 10" scars and knowing they have been forever changed. I asked him if he thought I was a freak now (half-joking, half-terrified). I will never forget his response, "no way, those are the sexiest scars you have because they've made you feel so much better." Wow! That was the nicest, most reassuring thing he could have said.
I also have to thank my Aunt Sheila (my Dad's sister). God has blessed me so greatly through her. It was with her that I prayed to receive Christ, which will always be the most important day of my life. God has taught me so much through her and He continues to challenge and feed me through our relationship. Sheila came to NY to take care of me when I sent Paul back after 5 days to be with the boys. She flew by herself, rented a car, navigated NY during rush hour, endured a very interesting lodging situation that could be a post in and of itself, ministered to me physically and spiritually, kept me great company, shared Godly wisdom with me, taught me to crochet and bought me an MP3 player so I could listen to one of my favorite author's lectures on audio. If you are not familiar with Chuck Missler I encourage you to read some of his lectures or articles or listen to his audio files. God will get you thinking through this man's words.
There are a million other people to thank, but that is all for now...I will devote a special post for that soon.
I love you all and thanks so much for your continued prayers and support.
April
Saturday, October 18, 2008
Wednesday, October 1, 2008
Aprils is out Surgery!!
April's surgery went well. The doctors successfully dithered her spinal cord and said that it went up 3.5 cm (that's allot). They also removed a small tumor (since they were in the area) that we have been monitoring for the last couple of years.
Good news! I should be able to see her in an hour or so.
Good news! I should be able to see her in an hour or so.
Wednesday, August 13, 2008
Home, Sweet Home!
Don't tell anyone, but I think I just pulled off the biggest Houdini move ever! Last week I left our old house with dishes out, dirty laundry in the hampers and toys all over the place... Yesterday, Paul brought me home from the hospital to a georgeous home with our furniture placed beautifully, beds made, kitchen cabinets organized, my clothes neatly placed in my closet, toiletries out and 2 adorable happy children!?! How did I get away with that one?
OK...hospital blah, blah, blah...After however many days of antibiotics and steroids I am finally clear of the infection, YEAH! The other great news is that they don't think it was ever meningitis, but some other kind of infection in my brain (we'll call it "moving"itis). They did confirm that I am leaking cerebral spinal fluid out of my nose which causes it's own host of issues, but the only fix for that is more brain surgery to place a patch over the leak. And, given the weakness in my connective tissue they feel like if they fix it in one place it will just come back somewhere else. Their brilliant recommendation was to stay very well hydrated and eat lots of salt to make my body retain water to cushion my brain and to find a good neurosurgeon to follow up with about the problem...now wait a minute...why didn't I think of that? Oh yeah, I did!
Now I just have to put up with Paul's constant nagging to REST and stay hydrated..."go get in bed!"..."what do you want to drink?"..."are you thirsty?"..."want some chips?"..."when's the last time you drank something?"..."sit down!" - actually, it's very sweet...he's taking great care of me and I feel like a little princess!
Thank you so much, way beyond what I can put into words, for everything you have all done for us. You have brought meals, unpacked us, done our laundry, encouraged us, lifted us up in your prayers, entertained Jack and Luke, sat with me at the hospital, written us such kind and inspiring messages, shared your wisdom with us and done countless more incredibly kind things for us. We are so appreciative!
Hopefully this will be the last post for a WHILE! I'm praying that there is NO more news to report and I will just continue to follow God's timing for my recovery, which seems to be a little longer than I had anticipated.
Love,
April
OK...hospital blah, blah, blah...After however many days of antibiotics and steroids I am finally clear of the infection, YEAH! The other great news is that they don't think it was ever meningitis, but some other kind of infection in my brain (we'll call it "moving"itis). They did confirm that I am leaking cerebral spinal fluid out of my nose which causes it's own host of issues, but the only fix for that is more brain surgery to place a patch over the leak. And, given the weakness in my connective tissue they feel like if they fix it in one place it will just come back somewhere else. Their brilliant recommendation was to stay very well hydrated and eat lots of salt to make my body retain water to cushion my brain and to find a good neurosurgeon to follow up with about the problem...now wait a minute...why didn't I think of that? Oh yeah, I did!
Now I just have to put up with Paul's constant nagging to REST and stay hydrated..."go get in bed!"..."what do you want to drink?"..."are you thirsty?"..."want some chips?"..."when's the last time you drank something?"..."sit down!" - actually, it's very sweet...he's taking great care of me and I feel like a little princess!
Thank you so much, way beyond what I can put into words, for everything you have all done for us. You have brought meals, unpacked us, done our laundry, encouraged us, lifted us up in your prayers, entertained Jack and Luke, sat with me at the hospital, written us such kind and inspiring messages, shared your wisdom with us and done countless more incredibly kind things for us. We are so appreciative!
Hopefully this will be the last post for a WHILE! I'm praying that there is NO more news to report and I will just continue to follow God's timing for my recovery, which seems to be a little longer than I had anticipated.
Love,
April
Friday, August 8, 2008
Tiny step backward...
OK...I knew that was too easy! And, I had an inkling that God had more to teach me...if I weren't so hard-headed the Big Guy would have a much easier job raising me!
Tuesday night I felt like I had a fever but I chose to be in denial and "wasn't able to find a thermometer," before falling dead asleep at 7:30 pm. I woke up several times with yucky night sweats, but due to the "denial," I blamed it on the pain. Wednesday morning my neck was very achy and stiff but I blamed it on muscle spasms...until my sweet mother and designated massage therapist tried to rub out the spasms...I about jumped across the room when she touched my neck because it was soooo tender. At this point one might think I should call a doctor but I had one of my closest friends and her daughter coming at noon and a chauffered coffee date with another friend down the street at 2:45...ummm, hello? Social therapy is great for extrovert's spirits, so, out of true concern for my health, I had to go!
By 5:00 I was in bed with fever, lots of neck pain and high pressure pain and swelling in my head. I had lots of night sweats that night (so much that Jack asked me when he snuck into our bed early that morning if I had had an accident...heehee). So, I decided I should call my doctor...right after Paul and I sold our house at 9:00 am and bought our new one at 1:00...ummm, hello? Priorities!
I called my internist and she told me to go to the hospital. I didn't like her answer so I called the docs in NY. They told me to go to the hospital. Bummer. Paul and I went straight there after we bought our house. We flew through the waiting room b/c by this point my loose, child-stretched sunglasses were making at least 1/2" indentations behind my ears that lasted over an hour and I was sweating and I have this tiny scar on the back of my head that has been useful for so many things (free coffee at Starbucks, cutting in airport lines, better parking, fast trips through the ER, etc.). They did my bloodwork and examined me and then transferred me to the Level 1 neuro-specialty hospital where I was immediately admitted to the CRASH Unit. I don't know exactly what that is but Starflight kept walking in front of my windowed doors rolling their patients to my neighboring rooms and we must have heard 10 "Code Blue's." I think it was at this point that I realized this might be kind of serious. Oops!
We got the lab results back and my white cell count showed I definitely had an acute bacterial infection and the Cerebral Spinal Fluid test showed gram-positive bacteria...drum roll...bacterial meningitis. That night was very scary. I felt like I was way out-of-it (more than usual, anyway), my head was huge, hot and squishy, I was having chills and low fever, terrible head and neck pain, etc. They immediately began treating me aggressively for meningitis with one antibiotic after another, steroids and whatever else they slip into my IV when I'm not looking. I finally got transferred around 2:00 am to the CCU (one step down from ICU) and I stayed there until tonight when I was moved to the corner, penthouse, 2 walls of windows room on the 9th floor. It feels like a hotel more than a hospital and I don't have 20 residents staring into my windows like a hamster cage all the time while some mysterious Attending says who knows what about me. Although, I like this..."Well, I've been practicing medicine for 20 years and I have never seen another patient with Ehlers Danlos, much less with your neurologic problems. You are a very complicated case (followed by a low, nervous belly laugh)." Then I feel all covered with warm fuzzies and just know I'm in the best hands (followed by my own nervous laugh...ummm, no).
I don't know how long I'll be here. I'm supposed to get a PIC line (an IV line in my upper arm that can remain for several weeks) so I can continue my antibiotic therapy in the comfort of my new home (that Paul and the movers moved us into today). I have had a great afternoon compared to yesterday, but still have some hurdles to jump before I can post bail. The doctors are about as certain about when I'll get out of this place as they are what the heck to do for me. Oh well, God is the Great Healer, not them. It's all in His timing. As for now I am getting to spend great quality time with my mom, watching all the HGTV I can stand, enjoying the view and trying to honor this time God has chosen for me to rest.
Thanks for all your support and prayers and posts that lift my spirits so much. I love you all and can't wait to see each of you. Please continue to pray for my family and caretakers here at the hospital, as well as for God to continue to bless me as incredibly as He has been in showing me how great He is and how much He is present and in control of all of this, rather than feeling sorry for my family and myself and taking a "worldy" view on our situation.
Love,
April
Tuesday night I felt like I had a fever but I chose to be in denial and "wasn't able to find a thermometer," before falling dead asleep at 7:30 pm. I woke up several times with yucky night sweats, but due to the "denial," I blamed it on the pain. Wednesday morning my neck was very achy and stiff but I blamed it on muscle spasms...until my sweet mother and designated massage therapist tried to rub out the spasms...I about jumped across the room when she touched my neck because it was soooo tender. At this point one might think I should call a doctor but I had one of my closest friends and her daughter coming at noon and a chauffered coffee date with another friend down the street at 2:45...ummm, hello? Social therapy is great for extrovert's spirits, so, out of true concern for my health, I had to go!
By 5:00 I was in bed with fever, lots of neck pain and high pressure pain and swelling in my head. I had lots of night sweats that night (so much that Jack asked me when he snuck into our bed early that morning if I had had an accident...heehee). So, I decided I should call my doctor...right after Paul and I sold our house at 9:00 am and bought our new one at 1:00...ummm, hello? Priorities!
I called my internist and she told me to go to the hospital. I didn't like her answer so I called the docs in NY. They told me to go to the hospital. Bummer. Paul and I went straight there after we bought our house. We flew through the waiting room b/c by this point my loose, child-stretched sunglasses were making at least 1/2" indentations behind my ears that lasted over an hour and I was sweating and I have this tiny scar on the back of my head that has been useful for so many things (free coffee at Starbucks, cutting in airport lines, better parking, fast trips through the ER, etc.). They did my bloodwork and examined me and then transferred me to the Level 1 neuro-specialty hospital where I was immediately admitted to the CRASH Unit. I don't know exactly what that is but Starflight kept walking in front of my windowed doors rolling their patients to my neighboring rooms and we must have heard 10 "Code Blue's." I think it was at this point that I realized this might be kind of serious. Oops!
We got the lab results back and my white cell count showed I definitely had an acute bacterial infection and the Cerebral Spinal Fluid test showed gram-positive bacteria...drum roll...bacterial meningitis. That night was very scary. I felt like I was way out-of-it (more than usual, anyway), my head was huge, hot and squishy, I was having chills and low fever, terrible head and neck pain, etc. They immediately began treating me aggressively for meningitis with one antibiotic after another, steroids and whatever else they slip into my IV when I'm not looking. I finally got transferred around 2:00 am to the CCU (one step down from ICU) and I stayed there until tonight when I was moved to the corner, penthouse, 2 walls of windows room on the 9th floor. It feels like a hotel more than a hospital and I don't have 20 residents staring into my windows like a hamster cage all the time while some mysterious Attending says who knows what about me. Although, I like this..."Well, I've been practicing medicine for 20 years and I have never seen another patient with Ehlers Danlos, much less with your neurologic problems. You are a very complicated case (followed by a low, nervous belly laugh)." Then I feel all covered with warm fuzzies and just know I'm in the best hands (followed by my own nervous laugh...ummm, no).
I don't know how long I'll be here. I'm supposed to get a PIC line (an IV line in my upper arm that can remain for several weeks) so I can continue my antibiotic therapy in the comfort of my new home (that Paul and the movers moved us into today). I have had a great afternoon compared to yesterday, but still have some hurdles to jump before I can post bail. The doctors are about as certain about when I'll get out of this place as they are what the heck to do for me. Oh well, God is the Great Healer, not them. It's all in His timing. As for now I am getting to spend great quality time with my mom, watching all the HGTV I can stand, enjoying the view and trying to honor this time God has chosen for me to rest.
Thanks for all your support and prayers and posts that lift my spirits so much. I love you all and can't wait to see each of you. Please continue to pray for my family and caretakers here at the hospital, as well as for God to continue to bless me as incredibly as He has been in showing me how great He is and how much He is present and in control of all of this, rather than feeling sorry for my family and myself and taking a "worldy" view on our situation.
Love,
April
Wednesday, August 6, 2008
Good Friends & Family are Priceless!
I am so blessed! I'm 100% sure I have the best friends and family in the world! They are so supportive, lovin
g and honest. Truthfully, I was worried about what the back of my hair looked like... so, since I couldn't see it, naturally I asked my family and friends to give me their honest opinions of how it really looked and whether or not they thought I should cut the front half. Everyone assured me you couldn't even tell I was missing any hair back there b/c my hair covered it completely. Thank goodness! I am so thankful to my 3 neurosurgeons for the very careful, considerate haircut they gave me!
g and honest. Truthfully, I was worried about what the back of my hair looked like... so, since I couldn't see it, naturally I asked my family and friends to give me their honest opinions of how it really looked and whether or not they thought I should cut the front half. Everyone assured me you couldn't even tell I was missing any hair back there b/c my hair covered it completely. Thank goodness! I am so thankful to my 3 neurosurgeons for the very careful, considerate haircut they gave me!(an updated picture I took yesterday with Jack and Luke...see for yourself...you can't even tell I just had brain surgery!)
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Wait a minute...I think if you look hard enough you can kind of see my boo boo. What do you think? Cut, or comb-over?
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Thankfully...there are 2 people in my life who NEVER let me get by without knowing exactly what they think! Kids are innocently & painfully honest! Since I walked in the front door from NY, both Jack and Luke have been asking me, "Mommy, what's wrong with your hair?" - "When's your hair going to be OK again?" - "How long 'til you look normal again?" - And, my favorite...- "Does your hair hurt like that?"
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I decided to trust the kids and cut it all off! I thought Jack would stop laughing at me if I lost the "reverse mullet," but he still thinks I look pretty funny! Every time I catch him looking at my hair and we make eye contact, we both crack up laughing! ____________________________________________________________________
I love my kids! If they can't make you smile, nothing can!!!
Thursday, July 31, 2008
April is back home!!!!!!!!!!!!!!!
April is back home in one piece. The boys are sooooo excited to see their mommy.
Wednesday, July 30, 2008
April is coming home
April has been released out of the hospital and is back at the hotel. If all goes well she will be fling back tomorrow. She is very excited to come home and she needs to get her rest. She won't be up for any phone calls just yet. whoopeee!!!
Tuesday, July 29, 2008
Oooh...GROSS! Hey, you asked for them!
These are some pictures of my incision. I wasn't going to post them, but SO MANY people kept begging for me to send them to them, so I conceded. If anyone has any suggestions of how to style my hair I'm taking any suggestions!Out of the Neuro ICU
Written yesterday at 5:00 pm
I get to make a jailbreak from the 24 hr/day, arm-sticking, people-waking, loud talking, "Nurse Wardens" in the ICU - who I also must say have taken great care of me - as soon as they get a room ready...yippee & wahoo!!! I can't wait! I have approx. 16 gillion wires everywhere that love to get tangled and drive the nurses crazy. =)
I have to say that this surgery was much harder than I had predicted, mostly b/c the worst kind of pain I'm experiencing -muscle spasms- cannot be treated with pain medicine. They're treated with muscle relaxers, but they have had to be careful to protect my airways. Hmmm...I thought if you just gave in to being a "druggy" you could always find a way out of pain...nope!
Sunday was a terrible pain day also. And I never, ever thought I could hit someone, but when the Physical Therapist came in and "so cheerfully" told me to get up out of bed so I could start walking (without offering me any help), she almost got a left hook! But, I could just hear Jack telling me "that's not a good choice, Mom," so I just let out a huge "hhhmmphhh" and rolled my eyes dramatically. (I'm guessing that wasn't the first time she'd gotten that reaction?!? I'd have had a lot more motivation if she'd dangled a Krispy Kreme donut on a stick out in front of me and told me if I caught up to it I could eat it! So, after about 30 minutes with my dad's and PT's help, I got out of bed, took two steps, and had to get right back in bed because it was so excruciating.
I slept the rest of the day....ahhhhhh....
Monday, "little miss positive" came back in and got me out of bed, again...grrrr. But much to my surprise I got out of bed easier and went about 10 feet with my walker and then back to the chair in my room where I sat upright for 3 hours!...now, I know that doesn't sound like a huge feat, but it was! The rest of that day I felt horrible and just battled the incredible swelling in my neck and the rock hard, bulging muscle spasms. Dad massaged my neck a lot and we used heat packs to soften them up. He and my doctors decided I looked like a linebacker.
Tuesday was great! Overall, I felt 200x better than Mondayand I have to humbly admit, the docs and therapists were right that getting moving would be hard at first, but it was the only way to start feeling better.I was able to walk 2 laps around the nurses station in the ICU and it was the first day I didn't sleep all day - in fact I didn't even take a nap and my neck started to look dramatically less swollen. I was also able to sit in the chair instead of lying in bed for a good portion of the day. And...drum roll...at 8 pm last night they released me from the NeuroICU to a real room!
Written Today at 10am
The doctors just came in (Wednesday am) and asked me if I was the same person they saw on Monday because I look so dramatically better! They told us not to cancel our flight home that's scheduled for tomorrow at 1:00pm. They would like to get me out of here today, but my sodium is too low for them to legally discharge me. So, they gave me some more Lasix and dad went and bought me enough salty foods to give me a heart attack and I'm shoving them down my throat. I'm doing the best I can do, but I realize that God's plan may be different.
Please pray that He would grant me and the doctors wisdom in this decision.
Now my goal is to get HOME!!! I miss you all and I love you guys so much. Thanks for all of the wonderful, encouraging messages and all of your hard work for us on the homefront!
April
I get to make a jailbreak from the 24 hr/day, arm-sticking, people-waking, loud talking, "Nurse Wardens" in the ICU - who I also must say have taken great care of me - as soon as they get a room ready...yippee & wahoo!!! I can't wait! I have approx. 16 gillion wires everywhere that love to get tangled and drive the nurses crazy. =)
I have to say that this surgery was much harder than I had predicted, mostly b/c the worst kind of pain I'm experiencing -muscle spasms- cannot be treated with pain medicine. They're treated with muscle relaxers, but they have had to be careful to protect my airways. Hmmm...I thought if you just gave in to being a "druggy" you could always find a way out of pain...nope!
Sunday was a terrible pain day also. And I never, ever thought I could hit someone, but when the Physical Therapist came in and "so cheerfully" told me to get up out of bed so I could start walking (without offering me any help), she almost got a left hook! But, I could just hear Jack telling me "that's not a good choice, Mom," so I just let out a huge "hhhmmphhh" and rolled my eyes dramatically. (I'm guessing that wasn't the first time she'd gotten that reaction?!? I'd have had a lot more motivation if she'd dangled a Krispy Kreme donut on a stick out in front of me and told me if I caught up to it I could eat it! So, after about 30 minutes with my dad's and PT's help, I got out of bed, took two steps, and had to get right back in bed because it was so excruciating.
I slept the rest of the day....ahhhhhh....
Monday, "little miss positive" came back in and got me out of bed, again...grrrr. But much to my surprise I got out of bed easier and went about 10 feet with my walker and then back to the chair in my room where I sat upright for 3 hours!...now, I know that doesn't sound like a huge feat, but it was! The rest of that day I felt horrible and just battled the incredible swelling in my neck and the rock hard, bulging muscle spasms. Dad massaged my neck a lot and we used heat packs to soften them up. He and my doctors decided I looked like a linebacker.
Tuesday was great! Overall, I felt 200x better than Mondayand I have to humbly admit, the docs and therapists were right that getting moving would be hard at first, but it was the only way to start feeling better.I was able to walk 2 laps around the nurses station in the ICU and it was the first day I didn't sleep all day - in fact I didn't even take a nap and my neck started to look dramatically less swollen. I was also able to sit in the chair instead of lying in bed for a good portion of the day. And...drum roll...at 8 pm last night they released me from the NeuroICU to a real room!
Written Today at 10am
The doctors just came in (Wednesday am) and asked me if I was the same person they saw on Monday because I look so dramatically better! They told us not to cancel our flight home that's scheduled for tomorrow at 1:00pm. They would like to get me out of here today, but my sodium is too low for them to legally discharge me. So, they gave me some more Lasix and dad went and bought me enough salty foods to give me a heart attack and I'm shoving them down my throat. I'm doing the best I can do, but I realize that God's plan may be different.
Please pray that He would grant me and the doctors wisdom in this decision.
Now my goal is to get HOME!!! I miss you all and I love you guys so much. Thanks for all of the wonderful, encouraging messages and all of your hard work for us on the homefront!
April
Monday, July 28, 2008
Monday Update
Just got an update from April's Dad.
April is doing better today. She ate a big breakfast and is not as tired. April's neck is really swollen and is causing her to have double vision so walking is still hard. The doctors are changing her meds to help with the swelling. Once her swelling goes down she will be moved from the ICU, maybe as early as tonight. The doctors still think that she will still beable to fly on Thursday.
April is doing better today. She ate a big breakfast and is not as tired. April's neck is really swollen and is causing her to have double vision so walking is still hard. The doctors are changing her meds to help with the swelling. Once her swelling goes down she will be moved from the ICU, maybe as early as tonight. The doctors still think that she will still beable to fly on Thursday.
Sunday, July 27, 2008
Im home and april's dad is in new york
April is still in a bunch of pain but she is making progress. I made it home and the kids were excited to be back home. april's dad is with her and says she is doing fine. I will have more details tomorrow.
Friday, July 25, 2008
Exercises
April is still waiting on a room so I only get to see her 30 mins or so every 4 hours. She started doing some of her exercises to loosen up her muscles. The nurse said this is going to be by far the most painful day. We are going to stay on our original schedule so I will be flying home tomorrow to watch the kids and get everything ready for moving( we are closing on our house on Aug 7th). April's dad (Thad Joyner) will be taking over and they should be fling home on the 31st.
At least the waiting room has free coffee.
At least the waiting room has free coffee.
Waiting on a room
I got to see April last night for an hour and she is doing well. Im about to see her again and we will hopefully get our own room soon this morning. Here are some pics of the kids at thier grandparents house.
Thursday, July 24, 2008
April in recovery
Visiting hours
I wont beable to see her until 7:30 est and can only stay for 30 mins. But they say she is doing fine and will be moved to her own room tomorrow.
Surgery finished with out a hitch!!!
Just taked to the doctor and everything went great. I should be able to see her in 30 mins.
We're Here...Waiting, Waiting, Waiting!!!
We are sitting in the waiting room just listening for my name to be called...boring! We both slept great and are excited that I will be feeling so much better soon...yippee and woohoo! That's it for now...Paul will be posting for a while as I'm going to be very drunk for several days...yippee and woohoo! (don't feel sorry for me...I'm going to be feeling no pain in Margaritaville!)
Wednesday, July 23, 2008
April's Blog
I set up this blog for April to keep everyone updated with the latest
status of her operation and recovery. Click the link below to see
the blog.
status of her operation and recovery. Click the link below to see
the blog.
http://aprilhenrynyc.blogspot.com/
Thanks,
--
Paul Henry
(512) 633-3829
Tomorrow's the Big Day!!!
7/23/08
Paul and I came to NY two days ago to prepare for my Invasive Cervical Traction and Tethered Spinal Cord surgeries. I was supposed to have the ICT today and the TSC surgery tomorrow, however, what fun would it be if everything went according to plan?!?
After the Chief of Neurosurgery, Dr. Thomas Milhorat, who happens to be the very best doctor in the world specializing in Chiari and related disorders, saw the radiographical changes in my neck before and after traction and witnessed the wonderful relief of my neurologic symptoms, he changed the plan. He said I had severe cranial settling and that it needed to be fixed before the tethered spinal cord. He also said I had a perfect textbook case of craniocervical instability in a patient with EDS and asked if he could have my permission to publish my case in his book. I’m going to be famous!
So, we will report to the North Shore University Hospital at 6:00 a.m. for a craniocervical fusion. Paul will post updates on this blog as he gets them.
I will be in the Neuro ICU for 3-5 days and then a step-down unit for 3-5 more days. I will then have to spend a night or two in NY to make sure I am OK to travel home. I will be unable to receive phone calls or flowers in the NICU, but Paul and I always appreciate your prayers.
Thank you all for your thoughts and prayers and for all the help you have given us during the past year. We could not have done it without you and are so grateful for your continued help. We are so blessed and we love you all!!!
Paul and I came to NY two days ago to prepare for my Invasive Cervical Traction and Tethered Spinal Cord surgeries. I was supposed to have the ICT today and the TSC surgery tomorrow, however, what fun would it be if everything went according to plan?!?
After the Chief of Neurosurgery, Dr. Thomas Milhorat, who happens to be the very best doctor in the world specializing in Chiari and related disorders, saw the radiographical changes in my neck before and after traction and witnessed the wonderful relief of my neurologic symptoms, he changed the plan. He said I had severe cranial settling and that it needed to be fixed before the tethered spinal cord. He also said I had a perfect textbook case of craniocervical instability in a patient with EDS and asked if he could have my permission to publish my case in his book. I’m going to be famous!
So, we will report to the North Shore University Hospital at 6:00 a.m. for a craniocervical fusion. Paul will post updates on this blog as he gets them.
I will be in the Neuro ICU for 3-5 days and then a step-down unit for 3-5 more days. I will then have to spend a night or two in NY to make sure I am OK to travel home. I will be unable to receive phone calls or flowers in the NICU, but Paul and I always appreciate your prayers.
Thank you all for your thoughts and prayers and for all the help you have given us during the past year. We could not have done it without you and are so grateful for your continued help. We are so blessed and we love you all!!!
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