I wish I'd updated before now to let everyone know that the surgery wasn't nearly as bad as we thought it was going to be, to ease everyone's minds. Oh well, I didn't, sorry :(
I'm writing this post from my hospital bed at Methodist Hospital in Houston, TX. I had surgery Thursday, May 25th at 8 a.m. to repair a hole in my skull base. The hole most likely occurred over a year and a half ago when the pressure in my brain became so high that it broke through the bone to relieve itself and has been leaking since, acting like a natural shunt to regulate my intracranial pressure (ICP). As much as I would love not to have any more surgeries, I am thankful the Lord designed my body the way He did b/c what seemed like a defect saved my life, or at least saved me from a seious brain injury.
The neurosurgeon performed the first part of my surgery by making a 2 inch, semi-circular, incision right above my hairline and inserting a temporary shunt through a burr hole in my skull into my ventricle that served as a pressure monitor as well as a drain for excess spinal fluid. Then, my neuro-otolaryngologist went through my nose, repaired my deviated septum and used part of my septum to reinforce the area which my previous CT scans showed my spinal fluid was leaking through. He tried and tried for 4 hours to aggravate my spinal fluid leak, but as the name suggests "spontaneous spinal fluid leak," it is just that, spontaneous. It is almost impossible to predict when it will, or cause it to leak. Therefore, he was unable to place a patch exactly where it needed to be, but he hoped it would hold and be accurately placed based on the scans.
I woke up in the N(euro)ICU with packing in both nostrils that were each the size of tampons, literally! It was impossilbe to know if I was leaking or just feeling pressure but after the third day I was almost positive I was leaking again. Bummer. Oh well, the surgereon said even if I am still leaking we are in a much better position now that the sinuses are clean and open and it should be much easier to find the bony defect the next time. We collected samples from the drainage today and will send them off to be 100% sure it's CSF, them we'll try it again. The next procedure won't include a "brain drain" so that will make it much less invasive and complicated.
Hopefully I'll be leaving the hospital tomorrow! Paul and the boys and I will be staying in Houston at our 11 month-old nephew, Blake's, house. (Blake's parents, Joel and Melissa will be there also...hehe) We are supposed to stay in town for 2-3 days to make sure my condition stays stable, plus we get to spend time with Blakey.
We're not sure what's going to happen next. Please keep us in your prayers and we'll keep you updated as we find things out.
Love,
The Henrys
Monday, June 1, 2009
Sunday, March 15, 2009
The Story Continues...
I feel as is I should write a segue to connect my last entry smoothly into this one, but it would be impossible to fill you all in on the joys of the past 4 months since my last surgery. It has been restful and rejuvenating and as Paul and I were reflecting on it the other night, we couldn't remember a happier time in our lives. I think we've been taught a huge lesson on perspective. There aren't any days that stand out in my memory, we've just had a feeling of being so blessed by the Lord and content. It is impossible to recount the events of the last 2 years without acknowledging that God is sovereign and has carried our family through times we could not have bared alone.
Although our struggle is not over, we know from experience we will be carried through it by God's mighty hands. It is already overtly obvious that He is laying down the path in front of us. Allow me to share...
1. Our son's ENT, Dr. Trey Fyfe, who has only known me as a "mom" (not a patient) has been my hero in helping me find the location in my brain that was leaking Cerebrospinal Fluid (CSF). He found it, called a neuroradiologist (who had a great personality and was very nice and helpful to me - a miracle in itself!) and arranged for me to go directly from his office to imaging for a spinal tap and cisternogram that definitively found the hole in my dura and skull that the CSF was leaking from. A 1 1/2 year mystery finally solved! They found a 5mm hole in the base of my skull on the cribriform plate.
2. How did I break the bone in the middle of the bottom of my skull? My intra-cranial pressure (ICP) became so high that it broke through the bone, causing the dura (protective covering around your brain) to burst and CSF to leak out of my nose. My ICP continues to get so high multiple times every day that it continually re-ruptures the hole in the dura and CSF leaks almost continually. It sounds bad, but it's actually a HUGE blessing. If my ICP had gotten increasingly higher and had not leaked I would have suffered a serious brain injury. The fact that I have such a defect in my connective tissue that it weakened my skull actually saved my life as I know it. And it continues to act in the same way a shunt would - to drain off excess fluid from my brain to protect it. God is so cool!
3. My friend, Lissa, called the other day and could tell I was not doing so well. She asked me what was wrong. If you know me you know my standard answer is "great," but for some reason I opened up to her about our insurance cancelling our out-of-network benefits and my fear that I wouldn't be able to find as great of a neurosurgeon in Texas who could operate on someone with my condition. She asked if I minded if she called her mom to see if she knew anyone, and I said sure. Then we got cut off and I didn't think much of it until she called back that night with her mom on 3-way. Her mom asked me exactly what was wrong and said she worked for an orthopedic spine surgeon and, if I didn't mind (yeah right!) she would get to work the next morning finding me a world-class neurosurgeon. By 9 a.m. she had found me one of the best neurosurgeons in the country, consulted with two other surgeons and found me a geneticist who specializes in Ehlers-Danlos. WHAT!?! I couldn't believe it. I had just told a good friend the day before that I had no idea how God wanted me to find a neurosurgeon, but I was pretty sure it wasn't going to fall into my lap! Joke's on me...when will I learn not to challenge His power?
There are countless more ways that God has shown me that He is holding me tightly in His arms and carrying me as I prepare to face the biggest surgery I have ever had. The surgeons will have to remove a big piece of the top of my skull through an enormous incision, lift up the frontal lobe of my brain, repair the hole in the bone, make any needed repairs to my retina and eye socket that the high ICP have caused, place a shunt in my ventricle and run a small drain tube into my abdominal cavity - I hope they will throw in a free face lift when they close the incision! (my neurosurgeon in NY said this surgery would make my first brain surgery look like a cake-walk...honest, but not so reassuring!) This surgery will be the biggest testimony that it is all Him who is going to get me through. I had such a strong will to fight and survive before the last 2 surgeries, but they drained me of my reserve. However, I feel Him giving me more and more courage and strength every day, which is a miracle because I was out!
I can't wait to see what He teaches me through this trial, as well as how He will work in the lives of all of the people around me. As I look back through the periods in my life when He has taught me the most, it is in the depths, when I have given up, that He has changed my soul. I am also reminded often that this life is but a blink in eternity and of Romans 8:18, "For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us."
There is no doubt that I am exhausted of my body and its condition, but my hope is in the Lord who tells us in Philippians 4:20-21, "For our citizenship is in heaven, from which also we eagerly wait for a savior, the Lord Jesus Christ; who will transform our lowly body into conformity with the body of His glory, by the exertion of the power that He has even to subject all things to Himself."
What's next? I have an appointment with my new neurosurgeon in Houston on March 25th. I am hoping we will come out knowing the intricacies of the procedure as well as a surgical date, but who knows for sure?
Much love and thanks for your prayers and support!
April
Although our struggle is not over, we know from experience we will be carried through it by God's mighty hands. It is already overtly obvious that He is laying down the path in front of us. Allow me to share...
1. Our son's ENT, Dr. Trey Fyfe, who has only known me as a "mom" (not a patient) has been my hero in helping me find the location in my brain that was leaking Cerebrospinal Fluid (CSF). He found it, called a neuroradiologist (who had a great personality and was very nice and helpful to me - a miracle in itself!) and arranged for me to go directly from his office to imaging for a spinal tap and cisternogram that definitively found the hole in my dura and skull that the CSF was leaking from. A 1 1/2 year mystery finally solved! They found a 5mm hole in the base of my skull on the cribriform plate.
2. How did I break the bone in the middle of the bottom of my skull? My intra-cranial pressure (ICP) became so high that it broke through the bone, causing the dura (protective covering around your brain) to burst and CSF to leak out of my nose. My ICP continues to get so high multiple times every day that it continually re-ruptures the hole in the dura and CSF leaks almost continually. It sounds bad, but it's actually a HUGE blessing. If my ICP had gotten increasingly higher and had not leaked I would have suffered a serious brain injury. The fact that I have such a defect in my connective tissue that it weakened my skull actually saved my life as I know it. And it continues to act in the same way a shunt would - to drain off excess fluid from my brain to protect it. God is so cool!
3. My friend, Lissa, called the other day and could tell I was not doing so well. She asked me what was wrong. If you know me you know my standard answer is "great," but for some reason I opened up to her about our insurance cancelling our out-of-network benefits and my fear that I wouldn't be able to find as great of a neurosurgeon in Texas who could operate on someone with my condition. She asked if I minded if she called her mom to see if she knew anyone, and I said sure. Then we got cut off and I didn't think much of it until she called back that night with her mom on 3-way. Her mom asked me exactly what was wrong and said she worked for an orthopedic spine surgeon and, if I didn't mind (yeah right!) she would get to work the next morning finding me a world-class neurosurgeon. By 9 a.m. she had found me one of the best neurosurgeons in the country, consulted with two other surgeons and found me a geneticist who specializes in Ehlers-Danlos. WHAT!?! I couldn't believe it. I had just told a good friend the day before that I had no idea how God wanted me to find a neurosurgeon, but I was pretty sure it wasn't going to fall into my lap! Joke's on me...when will I learn not to challenge His power?
There are countless more ways that God has shown me that He is holding me tightly in His arms and carrying me as I prepare to face the biggest surgery I have ever had. The surgeons will have to remove a big piece of the top of my skull through an enormous incision, lift up the frontal lobe of my brain, repair the hole in the bone, make any needed repairs to my retina and eye socket that the high ICP have caused, place a shunt in my ventricle and run a small drain tube into my abdominal cavity - I hope they will throw in a free face lift when they close the incision! (my neurosurgeon in NY said this surgery would make my first brain surgery look like a cake-walk...honest, but not so reassuring!) This surgery will be the biggest testimony that it is all Him who is going to get me through. I had such a strong will to fight and survive before the last 2 surgeries, but they drained me of my reserve. However, I feel Him giving me more and more courage and strength every day, which is a miracle because I was out!
I can't wait to see what He teaches me through this trial, as well as how He will work in the lives of all of the people around me. As I look back through the periods in my life when He has taught me the most, it is in the depths, when I have given up, that He has changed my soul. I am also reminded often that this life is but a blink in eternity and of Romans 8:18, "For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us."
There is no doubt that I am exhausted of my body and its condition, but my hope is in the Lord who tells us in Philippians 4:20-21, "For our citizenship is in heaven, from which also we eagerly wait for a savior, the Lord Jesus Christ; who will transform our lowly body into conformity with the body of His glory, by the exertion of the power that He has even to subject all things to Himself."
What's next? I have an appointment with my new neurosurgeon in Houston on March 25th. I am hoping we will come out knowing the intricacies of the procedure as well as a surgical date, but who knows for sure?
Much love and thanks for your prayers and support!
April
Saturday, October 18, 2008
Oh yeah, I had my other surgery!
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
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
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!!!
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