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
Wednesday, August 13, 2008
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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