Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Tuesday, December 14, 2010

Day 4 Monday, December 13th

Today started with physical therapy specialist evaluating Elizabeth in the morning. They have recommended acute rehabilitation for Elizabeth which basically means intense rehab.  We were hoping that it would get going today but the insurance company was slow getting back to the hospital. It will start tomorrow. We are anxious to get started as could be imagined. She slept so so last night and is very tired still. Her jaw is still the biggest problem right now pain-wise.  The incision on the head ironically does not hurt that much as there are not a lot of nerves there but the jaw muscle being cut is a very painful thing. The stitches in her head are the dissolving type. The pain drugs make her really drowsy when they kick in. These drugs also make her nauseous which they give a med for that too. When she opens her eyes she gets pretty dizzy still and that also makes her feel nauseous.  Her eyes tend to be closed a lot for this reason.  All this leads up to not being able eat without throwing up.  Although, she did eat a little today which is more than it’s been which is good! We’re trying to bring in foods that she’s craving. Tonight we brought in pizza as she asked for it. Unfortunately the jaw is just too sore to chew that even though it was pretty soft pizza. She ate a few bites. She also asked for strawberries and blueberries and was able to eat a little of that once it was chopped. Also had a little vanilla ice cream.  Tomorrow we will try frozen yogurt as she has requested. She’s drinking a little soda and a fair amount of water. We really need to get this eating thing going… not even soft foods are working right now…. I hope this improves soon. Her strength over all has improved each day. The left arm/leg weakness has also improved some since yesterday. Speech and face are a tiny bit better. She was also able to take a shower again today and did well with that with a little help from me. She also walked the circle of our wing once this evening which was great and her balance is pretty good. Even though she doesn’t sound/look the same she still has her same funny wit about her!! She is constantly cracking up the staff here. Again, which is so amazing considering the situation, but that's just her J …She and I had a really good laugh together today (which was the first time in past 3 days) as I asked her if she needed anything and she said “a head transplant”. It was a nice moment because of the laughter but also because I haven’t seen her smile that much since all of this (her left side face muscles don’t allow her to smile easily).  I would often describe Elizabeth’s smile as having the power to light up the room! Those of you who know her know what I’m talking about!  It still did that for me! .
Elizabeth’s mom Michelle was there this morning and I was there in the day and evening time. Michelle and I have been a good team through these last 4 days. She has been a gigantic help with Jack and Elizabeth both! My sister Rebecca and brother- in-law Tom have continued to be an amazing help with filling in all the loose gaps from doing to laundry, to supply runs, to watching Jack, to pizza runs for Elizabeth, to just great moral support.  They have also offered up their home as Elizabeth transitions into rehab and Michelle and I leave the hotel which is on the campus of the hospital. The Hampton Inn could not have worked out any better… nice place that’s clean, with all the stuff you need especially being so close. I can walk to Elizabeth room in under 5 minutes. I was very thankful that it’s so close. This place is a must for anyone coming here to have a surgery at Barrows Neuro.  Tomorrow is a big day with starting rehab but also packing up two hotel rooms with a 22 month old in tow and setting up at Tom and Rebecca’s house.  Thanks so much Tom and Rebecca for everything including your house!
Elizabeth is set to move to the rehab wing at Barrows which obviously is the place you want to be for this. She should be over there by mid day tomorow (Tuesday). She will have her own room at this facility and will be there for at least 10 days and would then continue at home… at least that is the tentative the plan. We’ll obviously know more in these first 10 days of rehabilitation.
Elizabeth continues to ask me to tell you all that she is so grateful for all your support and positive energy. I continue to read her all the comments on the blog left for her and I. She hangs on to every word as I read them to her! I see in her eyes how much it means!!!!
 I’m am pretty worn out as could be imagined. These days are so tiring and go by so fast I often can’t remember what day it is or what time it is...  I will try to sleep now…
Thanks so so much everyone!
John

15 comments:

  1. Dear Elizabeth,
    I am not sure if you remember me, but this is Juanita, Juliet's old high school friend.

    Just wanted to let you know that I am praying for your full recovery. Also to tell you that, the brain's capacity to re-heal itself is amazing.

    My 2nd daughter Taylor who is 3 now, was born premature and suffered a lot of brain damage, it will be a very long road for her, but everyday she does something new, and with a lot of therapy she continues to make progress. Out of this whole experience with Taylor I can tell you one thing...Love and faith can move mountains.
    And, being thankful for each moment is truly a gift that so many don't have.

    All the best to you and your family,
    Juanita

    Please say hi to your mom! She is a wonderful cook and I am sure she will be whipping you up some great recovery meals!

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  2. I an so happy to hear about the improvements. My jaw was cuts well during my surgery. This was the most painful part for me and took the longest to heal. My suggestion is drink lots of ensure. It helped me keep my strength up since I could not eat many foods with nutrional value.
    Rachel

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  3. Elizabeth and John, We are happy to hear of your daily progress! God is with you every step of your journey. Keep up your faith, and know we love you very much. You are in our prayers, Aunt Cathy & Uncle Joe

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  4. Elizabeth and family,

    You are in my prayers daily and I wish all of you a successful outcome. Take lots of rest and keep the faith. I hope you have a speedy recovery.

    May Gods Blessing be with you Elizabeth and the family as well.

    Henk (vandy from AA)

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  5. Rick G. and Patti G. say
    Good morning John. That's really good Elizabeth could walk. we're sorry to hear she is having so much pain with the jaw muscles. Just a few days post op I would expect lots of pain involved with the muscles that got damaged in the surgery.

    That's great that you are doing this blog to keep friends up on events and progress. My wife Patti G. and I went thru a cav-mal surgery in March of this year. I kept people updated with e-mails and it was good to have something to occupy my mind.

    Oh! And Patti says that Elizabeth can't have that 'head transplant' till Patti gets hers. Patti has requested a brain transplant numerous times but the insurance refused so we are waiting approval for the 'head transplant'

    Keep up the good work. You are all in our thoughts, our hearts, and our prayers. Rick G.

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  6. Elizabeth and John-
    As we read these daily updates, we are just amazed at how strong you both are. We admire your strength and determination as you get through this difficult challenge life has thrown at you. We want you both to know that we think about you guys everyday and pray for a healthy speedy recovery for Elizabeth. Elizabeth continue to stay strong and GOD will lead you through this. John, we tip our hats to you for being such a great husband and father. I know we live miles away but please let us know if you need anything at all!

    Love Always,
    Stephen, Tiana, and Kaydyn Brooks

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  7. I continue to think about you often and am so happy to hear that you are making some progress even before you begin rehab. Keeping your sense of humor will be your strongest asset other than your family and friends and, of course, the wonderful care at Barrow. I hope that your rehab goes well and that you will soon be able to return home to your wonderful family.

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  8. We are praying for strength for both of you, Elizabeth and John.
    I remember when I got married(not the great accomplishment that you are doing), but someone told me "Your wedding might not go exactly as you planned it, but YOU WILL ACHIEVE THE GOAL." I truly believe you will get there. " It is by living courageously - daily - with a deep belief in your personal vision that you will achieve true success"
    I'm so glad you have so many people surrounding you. I hope can both find time to rest and continue the race to the finish line. I will also pray for some extra energy for you. Thanks for keeping us informed. Peace.
    Liz, Michael, Sydney and Danielle

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  9. Elizabeth,
    I just wanted to let you know I am praying for you and your family. It's been forever since I've talked to you but it seems like just the other day we were laughing at Adam and Nick across the room at Similac training (one of the best times I've ever had). I feel honored to know you as a friend and please let me know if I can do anything. God bless.
    Josh Gwin

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  10. Hi Elizabeth:
    It's your cousin heather, I really never got a chance to thank you and John for coming out and supporting us as a family when my Mom was sick. With that being said, I just want to let you know that I'm praying for you all the time and am sending you plenty of positive energy and beautiful healing light. I have faith and recognize that this is part of a bigger plan. I believe in you and the team that is behind you. I know that you are strong and love you very much.
    - heather

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  11. Hang in there Elizabeth! Good for you for walking and the shower! The more you walk, even if you don't feel like it the better!! Make sure to put your ICE packs on!! Those will help you out!!

    Praying for you!!

    HUGS!
    beckyinaz

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  12. Hi Elizabeth and John! I love being able to read these updates and I am so happy to hear of the little victoriesyou guys are having. Take it one day, one hour, one minute at a time! And try to keep laughing....this should give Elizabeth a laugh ...I am in Columbus in the freezing cold at a training! I am actually leading about the new ensure and juven which could maybe help you! My roomie and friend has the account of the hospital you guys are at and says they are great. If you want I will email you the info on the products that may help Elizabeth. Get your rest and John keep the updates coming! Xoxoxo, Elizabeth

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  13. Elizabeth and Jon-
    I think about you everyday - my thoughts and prayers are with you. You are so amazing Elizabeth - stay strong!! Thank you for the blog and thank you for the updates!!
    xoVal

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  14. Am so glad to hear she's doing better stay strong and I love you and John you amazing...
    Melina

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