Please forgive yet another post about the past. I am trying to get my memories written down before I forget them forever.
I had been given a few tentative release dates from the hospital. They had all been cancelled due to pneumonia, sepsis, feeding tube problems, etc. My first one was early January but I was still there In March. I was given a target release date of March 17, 2008. I held on to this idea with all my might and my therapists, nurses and other staff all cheered me on. On one of my daily visits from the Doctors, I casually remarked that they would have later rounds on Thursday because of their weekly meeting. Dr. Edgley laughed and said that if I knew their schedule, it was definitely time for me to go home! My wonderful therapists, Libby and Rachel, had done a home visit to my moms and my feeling was, if they say it's okay, it IS okay. A couple of days before my release, I got really sick and my heart rate was high and we were worried about pneumonia again. My dear nurse, Terrie, sat in my room nearly the whole night, just taking care of me and trying to keep me from, once again, heading to the ICU. Unfortunately I was worse by early morning and was transferred. My mom was sent there when she came and we both prayed and hoped that this wouldn't ruin my hopes of leaving. (On a side note--that day my therapists came to visit me in the ICU and even brought gifts. That memory still warms my heart and makes me smile.) I was only in the ICU for a while and was back in Rehab by that night. Everything was still a go!
The day finally came! Many hugs were given and tears shed. The people there had become like family. They had seen me at my most vulnerable, had given me care, love, and compassion, offered me encouragement, treated me like a friend, and laughed and cried with me. They taught me what true charity was. One CNA even fell onto my bed with me. I still laugh about that, Amy!
I was really excited to go home or rather, to my mom's house. I knew it was a huge step and I could have more freedom to go, do, and see people. But I was scared to death. The hospital was home. I was secure there. I knew that if something bad happened I would be taken care of. I was not at all sure I was ready for real life. More tears were shed out of fear.
Right before I left, Terrie gave me a snow globe music box that has the word hope in it. Around the bottom are various words of encouragement and the inscription reads, "Find the light in every day, Jodi."I still keep it in my front room where I can see it every day.
My mom left early and Robert got to be the one to actually take me away. It was so strange to see the world again. Just driving from Salt Lake to Riverdale was totally foreign to me.
When we finally pulled around the corner to my moms house, I couldn't believe it. Family and friends all crowded into the drive underneath a huge sign welcoming me home. People obviously had taken off or raced home from work and there were about 40 or 50 aunts, uncles, cousins, siblings, nieces and nephews, and friends. I still can't believe they had come for me!
After greeting some but not all, I went inside where there was another sign on the mantle to welcome me home (my temporary home).
It had been a very long day and I was both emotionally and physically exhausted. All I did that evening was lie on my moms bed and watch T.V. and as soon as I could, I had my mom give me my sleeping pill.
In that home, with my saint mom, feeling my dad's strong presence, and surrounded by the love of family and friends, I was right where Heavenly Father wanted me.
Saturday, June 9, 2012
Thursday, June 7, 2012
Belly Buttons
Today, Jain again approched me, pulled up my shirt a little, and counted my belly buttons. Little does she know they are scars. Good grief!
Wednesday, June 6, 2012
Christmas etc.
I spent a few holidays in the hospital, and while I have good memories of them, they weren't the picture of happy family time. Wonder why!?
My first holiday was Christmas. I wouldn't allow any decorations. If I couldn't be home then I was going to ignore it and hope it ignored me. It didn't. First, my friend, Gillian, brought up a small tree that was way too cute to banish. Christmas Eve was really fun. Therapy, therapy, and more therapy. But I got a break for Christmas day. Family and friends made sure the day included visits, walks for them, rides for me, cards, and fun gifts. I love the pictures of the kids done my sweet photographer friend. The gift from Robert was a different story. It was a camera that I had wanted for months and Robert and I had spent weeks choosing and we ordered it just days before my stroke. Annoyingly, my hands now shake so much that I have never even used the thing! Robert sure likes it, though :)
My anniversary is December 29. It was extremely romantic. Picture Robert and me squished together on my little bed, trying to avoid all my tubes, watching a movie (which I could barely see), and only a thin curtain seperating us from my sweet roommate, Dee. Talk about a recipe for romance!
New years eve was much the same as Christmas Eve with no break from therapy. I was exhausted and asleep by nine. My nurse did come by at midnight to give me a beautiful, plastic, 2008 necklace before I fell fast asleep again.
Other holidays were hardly noticed. I was transferred out of Rehab because my feeding tube had become dislodged, causing it's contents to spill all over inside of me. I had a severe infection which required numerous surgeries and a 3 week stay in the IMCU.
But I was back in Rehab by Valentines. Again, regular schedule of therapy fron 7:45 until 4:00ish. My sister-in-law, Lisa snuck in to decorate my room with a ton of hearts on which were written notes from my siblings. I loved it! That night Robert and I had another romantic evening. His big gift to me? I couldn't swallow so no treats, I didn't have any need for jewelry or clothes, we couldn't go out anywhere...so...socks! Very cute socks with skulls wearing bows. Seriously, I couldn't love diamonds more.
All in all my holidays were fun and memorable. I mean as fun as they could be in the hospital. Thanks to my family, friends, mom and Robert!
My first holiday was Christmas. I wouldn't allow any decorations. If I couldn't be home then I was going to ignore it and hope it ignored me. It didn't. First, my friend, Gillian, brought up a small tree that was way too cute to banish. Christmas Eve was really fun. Therapy, therapy, and more therapy. But I got a break for Christmas day. Family and friends made sure the day included visits, walks for them, rides for me, cards, and fun gifts. I love the pictures of the kids done my sweet photographer friend. The gift from Robert was a different story. It was a camera that I had wanted for months and Robert and I had spent weeks choosing and we ordered it just days before my stroke. Annoyingly, my hands now shake so much that I have never even used the thing! Robert sure likes it, though :)
My anniversary is December 29. It was extremely romantic. Picture Robert and me squished together on my little bed, trying to avoid all my tubes, watching a movie (which I could barely see), and only a thin curtain seperating us from my sweet roommate, Dee. Talk about a recipe for romance!
New years eve was much the same as Christmas Eve with no break from therapy. I was exhausted and asleep by nine. My nurse did come by at midnight to give me a beautiful, plastic, 2008 necklace before I fell fast asleep again.
Other holidays were hardly noticed. I was transferred out of Rehab because my feeding tube had become dislodged, causing it's contents to spill all over inside of me. I had a severe infection which required numerous surgeries and a 3 week stay in the IMCU.
But I was back in Rehab by Valentines. Again, regular schedule of therapy fron 7:45 until 4:00ish. My sister-in-law, Lisa snuck in to decorate my room with a ton of hearts on which were written notes from my siblings. I loved it! That night Robert and I had another romantic evening. His big gift to me? I couldn't swallow so no treats, I didn't have any need for jewelry or clothes, we couldn't go out anywhere...so...socks! Very cute socks with skulls wearing bows. Seriously, I couldn't love diamonds more.
All in all my holidays were fun and memorable. I mean as fun as they could be in the hospital. Thanks to my family, friends, mom and Robert!
Monday, June 4, 2012
More Answers
As I have stated so often, I LOVE questions! I live with this every day so I forget details that I want to always remember. So, here is more Q and A.
Q. How did your children do with the changes? Everything from not having you there, to looking different, to strength differences?
A. Aleq took it the hardest by far. He awoke that first morning to flashing lights outside his window and raced down the hall to see me being carried out by two strangers and daddy speeding off behind us. The boys were only 5 and 2 and the confusion the unknown must have been really tough. We have wonderful friends who stayed with all my kids until my in-laws arrived. They then saw them rush out of the house when that same friend delivered the message that I was being life flighted. In the following days they couldn't see me because kids are not allowed in the ICU. When they finally did see me, I was dressed different, looked different, just lay there, didn't talk, and there were wires, tubes, lights, and sounds that probably frightened them. They saw daddy only a few minutes every day, their brand new baby sister moved out, and (thankfully) Papa and Naya, Robert's parents, moved in to our house. They were so sweet and loved my kids like no one else could but they weren't mom and dad. There were times when Aleq would just break down and cry and even told my brother that he just wanted things back the way they were.
We tried to make the rare hospital visits less scary with wheelchair rides, treats, visits to the gift shop, and even trips to the therapy gym where they were spoiled rotten by the saintly therapists. When I got to my moms, visits happened almost daily but they mostly ignored me and played with the house full of toys and often visiting cousins.
When I was able to spend a whole weekend at home, it was as if it were Christmas the whole time. We didn't even do much of anything but the happiness they showed was incredible!
But they showed remarkable resilience.They seem to have very few negative effects. Quite the opposite. When Ana Jain came home, everybody had to adjust. She was totally confused. If you throw a rock from my mom's front door, you would probably be able to hit my sisters house so we were with Jain every day. Still, coming home was very hard for all involved.
I am convinced that all 3 of my kids were taken care of by our Heavenly Father. They all went through difficult times but they came through it with flying colors. They are more compassionate, appreciative of small things, responsible, and MY SWEET CRITTERS! That's not to say there isn't wildness or naughtiness in our home:)
As far as my looks and strength, Jain and Tommy never seemed to notice. Aleq did and at one point he and his friend, very seriously, decided that I look like Harvey Two Face. It's just not a big deal to them. I find that my reaction has a huge impact on how they view it all. We often laugh at things and our favorite word is strokey. "I cant open that because my hands are too strokey. " "I'm feeling strokey so I need to sit." " Mom, stop singing with that strokey voice." " Don't bug me, I'm strokey." This last one is my personal favorite and I often use it whether or not it has to do with my stroke. Robert and the kids just roll their eyes and shake their heads and often tell me to "come off it, Mama!"
Q. If you had a suction machine when you went home but didn't have the trach...did your mom suction through your mouth and nose?
A. I could not swallow, not even my own saliva, for many, many months. So I used the suction machine like a dentist would, to clear out my mouth.
Q. How was your peg tube different than a G-tube? How long did you have it?
A. Really no difference. A Peg tube is just the generic term for all feeding tubes. I had a G-tube for quite a while, until my stomach stopped working, then I got a JG-tube. Explanation. One more blessing was that my stomach started working again!!
About 9ish months after my stroke, I had worked long and hard on my swallow and I was finally told by my speech therapist that I could try small bits. My first treat? 1/2 of a McDonald's fry. It only took me about 1/2 hour for that huge meal. It took me almost another year to be able to swallow medication and be able to get enough calories orally. I kept the tube for months after tat just to be absolutely sure I didn't need it.
Once on one of my numerous trips to the ER, some doctors were talking right outside of my room. Sadly, I understood EVERY WORD! Gotta love the unsolicited education.
Q. How did your children do with the changes? Everything from not having you there, to looking different, to strength differences?
A. Aleq took it the hardest by far. He awoke that first morning to flashing lights outside his window and raced down the hall to see me being carried out by two strangers and daddy speeding off behind us. The boys were only 5 and 2 and the confusion the unknown must have been really tough. We have wonderful friends who stayed with all my kids until my in-laws arrived. They then saw them rush out of the house when that same friend delivered the message that I was being life flighted. In the following days they couldn't see me because kids are not allowed in the ICU. When they finally did see me, I was dressed different, looked different, just lay there, didn't talk, and there were wires, tubes, lights, and sounds that probably frightened them. They saw daddy only a few minutes every day, their brand new baby sister moved out, and (thankfully) Papa and Naya, Robert's parents, moved in to our house. They were so sweet and loved my kids like no one else could but they weren't mom and dad. There were times when Aleq would just break down and cry and even told my brother that he just wanted things back the way they were.
We tried to make the rare hospital visits less scary with wheelchair rides, treats, visits to the gift shop, and even trips to the therapy gym where they were spoiled rotten by the saintly therapists. When I got to my moms, visits happened almost daily but they mostly ignored me and played with the house full of toys and often visiting cousins.
When I was able to spend a whole weekend at home, it was as if it were Christmas the whole time. We didn't even do much of anything but the happiness they showed was incredible!
But they showed remarkable resilience.They seem to have very few negative effects. Quite the opposite. When Ana Jain came home, everybody had to adjust. She was totally confused. If you throw a rock from my mom's front door, you would probably be able to hit my sisters house so we were with Jain every day. Still, coming home was very hard for all involved.
I am convinced that all 3 of my kids were taken care of by our Heavenly Father. They all went through difficult times but they came through it with flying colors. They are more compassionate, appreciative of small things, responsible, and MY SWEET CRITTERS! That's not to say there isn't wildness or naughtiness in our home:)
As far as my looks and strength, Jain and Tommy never seemed to notice. Aleq did and at one point he and his friend, very seriously, decided that I look like Harvey Two Face. It's just not a big deal to them. I find that my reaction has a huge impact on how they view it all. We often laugh at things and our favorite word is strokey. "I cant open that because my hands are too strokey. " "I'm feeling strokey so I need to sit." " Mom, stop singing with that strokey voice." " Don't bug me, I'm strokey." This last one is my personal favorite and I often use it whether or not it has to do with my stroke. Robert and the kids just roll their eyes and shake their heads and often tell me to "come off it, Mama!"
Q. If you had a suction machine when you went home but didn't have the trach...did your mom suction through your mouth and nose?
A. I could not swallow, not even my own saliva, for many, many months. So I used the suction machine like a dentist would, to clear out my mouth.
Q. How was your peg tube different than a G-tube? How long did you have it?
A. Really no difference. A Peg tube is just the generic term for all feeding tubes. I had a G-tube for quite a while, until my stomach stopped working, then I got a JG-tube. Explanation. One more blessing was that my stomach started working again!!
About 9ish months after my stroke, I had worked long and hard on my swallow and I was finally told by my speech therapist that I could try small bits. My first treat? 1/2 of a McDonald's fry. It only took me about 1/2 hour for that huge meal. It took me almost another year to be able to swallow medication and be able to get enough calories orally. I kept the tube for months after tat just to be absolutely sure I didn't need it.
Once on one of my numerous trips to the ER, some doctors were talking right outside of my room. Sadly, I understood EVERY WORD! Gotta love the unsolicited education.
Sunday, June 3, 2012
Baby Aubrie
Today I was lucky enough to go see the blessing of my niece. It was beautiful. She was beautiful. I always feel lucky to see babies be blessed but her parents and so many others waited so long for her to finally get here that today was extra special. As soon as the Sacrament was finished, her mom, Shanae, let me hold her for the rest of the meeting. I loved it! I felt that familiar weight as I cradled her. Aleq and I giggled at the sounds she made in her sleep and Tommy was just in awe that "it" was moving.
Jain was not blessed in our church building but in my moms home with family and close friends present. I had to have Wendy help me dress her and holding her unassisted was out of the question. But the joy I felt that day could not have been greater. I felt truly blessed to be alive, to have my little family all together, and to see my wonderful husband bless our miracle. It was small and personal and I loved every minute of that day!
Last night Jain spent the night at Wendy's and came to Aubries blessing with their family. Just before the meeting started, Jain ran over to where we were sitting to say hello and show us her lovely new outfit (Wendy spoils her a tiny bit). She then ran right back to be with Wendy's fam. When her 2nd family is around, we quickly fall in importance on her list. This doesn't bother me in the least. I know she loves us with all her heart. I feel so happy that she has another family who she loves, and knows they love her. Plus they have a hot tub so we could never compete!!
Why do LDS folks bless babies? Go here.
Jain was not blessed in our church building but in my moms home with family and close friends present. I had to have Wendy help me dress her and holding her unassisted was out of the question. But the joy I felt that day could not have been greater. I felt truly blessed to be alive, to have my little family all together, and to see my wonderful husband bless our miracle. It was small and personal and I loved every minute of that day!
Last night Jain spent the night at Wendy's and came to Aubries blessing with their family. Just before the meeting started, Jain ran over to where we were sitting to say hello and show us her lovely new outfit (Wendy spoils her a tiny bit). She then ran right back to be with Wendy's fam. When her 2nd family is around, we quickly fall in importance on her list. This doesn't bother me in the least. I know she loves us with all her heart. I feel so happy that she has another family who she loves, and knows they love her. Plus they have a hot tub so we could never compete!!
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| I got to hold baby Aubrie... |
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| But this is my all time favorite girl!! |
Saturday, June 2, 2012
Dear Tessie,
Dear Tessie,
I don't mind your questions at all! In fact, I like having people ask questions, especially children. A few weeks ago I was visiting teaching and the lady had her kids there. Her little boy whispered to her, "Mommy, what's wrong with her face?" The mom knows but said, "I don't know. Why don't you ask her?" I LOVED this! It allowed him to talk directly to me and to hear my explanation. We laughed together at how silly I look and I let him touch my face. He knows now that I may look different but that doesn't make me scary. And I'm so thankful to his mom for not being embarrassed and instead used this to teach her son.
Also, those of us going through these hardships have to stick together!
Here are my answers:
Q. If you were fine mentally to go to your home, why did you have to stay with your mom for so long? A. I had all my mental faculties but I had been a patient for so long that every bit of "grown up Jodi" was gone. One therapist calls it learned helplessness. My whole identity of wife, mom, neighbor, adult, had been stripped away as I was at others mercy and had to rely on them for everything. Yes, everything. Getting "me" back was a very gradual thing. I remember when I first spent a full day alone with my boys I felt like a little girl playing house. When I finally moved home and my in laws moved out, and it was just our family, the process had only started and is honestly still going on. Having my mom leave on her mission was a giant push in the right direction. I am sure I have been blessed by her service.
Q. Where were you at in all aspects when you were released from the hospital or rehab or wherever you were last at?
A. I was in an in house rehab center at the University of Utah. After too long in the ICU and then Neuro Accute, I was wheeled down to the rehab wing. While there, my peg tube came out inside my abdomen, causing sepsis and three additional surgeries. My stomach stopped working at all so I had an NG tube for a while. All of this required a three week stay in the IMCU. After I returned to Rehab, I was there for a long time, monitored closely, but three days before my release date, I aspirated after throwing up and landed back in the ICU. I went home but was VERY fragile. I had a portable suction machine (Don't you love their noise?), peg tube, my eye was still damaged so I had a patch, my voice was uncontrollable and monotone, I was still too weak to move a lot on my own, couldn't even attempt standing, and even a little cold was life threatening. After a few months I had surgery on a foot contracture. He put a "halo" contraption on my leg that had bars that hooked into three points of my bone and had smaller pins going into muscles all over my leg and foot. You should see the scars! Every day my mom had to turn each pin according to a schedule to slowly stretch my leg. It was very painful so in addition to the many many meds she was already managing, she had to administer high doses of oxicodone every few hours. I was totally non weight bearing for 3 months for that. So while I was well enough to leave the hospital, I needed around the clock care. I was still faaar from going home. :(
Q. How long did you have the trach for? At what point were you able to get a speaking valve to talk with the trach?
A. I got the trach just a couple of days after the stroke. It was a big, inflatable kind so I couldn't have a speaking valve. After a few weeks, I got it replaced (fun) with a smaller one and then I got a valve. That thing was super hard so I had to do only a few minutes more each day. I would often pull it off in my sleep. I hated it but it was just one of a million things I hated. About a week and a half before I was to be released, my therapists and Doctors had heard (or seen) enough of my complaints and finally put in a trach button. This was a really small button that kept the opening for a real trach and allow me to try out breathing on my own for a few days before doing anything permanent. That very night I coughed and it came out but none of us caught on until my trach cleaning. By then the hole had already started to close and my Doc just smiled and said to leave it. HOORAY! So I was trach free before leaving the U.
Please feel free to ask away! Others may be private about this, but I want to share it with everyone. The Lord has chosen me to show what he can do and I feel a responsibility to share!!
I don't mind your questions at all! In fact, I like having people ask questions, especially children. A few weeks ago I was visiting teaching and the lady had her kids there. Her little boy whispered to her, "Mommy, what's wrong with her face?" The mom knows but said, "I don't know. Why don't you ask her?" I LOVED this! It allowed him to talk directly to me and to hear my explanation. We laughed together at how silly I look and I let him touch my face. He knows now that I may look different but that doesn't make me scary. And I'm so thankful to his mom for not being embarrassed and instead used this to teach her son.
Also, those of us going through these hardships have to stick together!
Here are my answers:
Q. If you were fine mentally to go to your home, why did you have to stay with your mom for so long? A. I had all my mental faculties but I had been a patient for so long that every bit of "grown up Jodi" was gone. One therapist calls it learned helplessness. My whole identity of wife, mom, neighbor, adult, had been stripped away as I was at others mercy and had to rely on them for everything. Yes, everything. Getting "me" back was a very gradual thing. I remember when I first spent a full day alone with my boys I felt like a little girl playing house. When I finally moved home and my in laws moved out, and it was just our family, the process had only started and is honestly still going on. Having my mom leave on her mission was a giant push in the right direction. I am sure I have been blessed by her service.
Q. Where were you at in all aspects when you were released from the hospital or rehab or wherever you were last at?
A. I was in an in house rehab center at the University of Utah. After too long in the ICU and then Neuro Accute, I was wheeled down to the rehab wing. While there, my peg tube came out inside my abdomen, causing sepsis and three additional surgeries. My stomach stopped working at all so I had an NG tube for a while. All of this required a three week stay in the IMCU. After I returned to Rehab, I was there for a long time, monitored closely, but three days before my release date, I aspirated after throwing up and landed back in the ICU. I went home but was VERY fragile. I had a portable suction machine (Don't you love their noise?), peg tube, my eye was still damaged so I had a patch, my voice was uncontrollable and monotone, I was still too weak to move a lot on my own, couldn't even attempt standing, and even a little cold was life threatening. After a few months I had surgery on a foot contracture. He put a "halo" contraption on my leg that had bars that hooked into three points of my bone and had smaller pins going into muscles all over my leg and foot. You should see the scars! Every day my mom had to turn each pin according to a schedule to slowly stretch my leg. It was very painful so in addition to the many many meds she was already managing, she had to administer high doses of oxicodone every few hours. I was totally non weight bearing for 3 months for that. So while I was well enough to leave the hospital, I needed around the clock care. I was still faaar from going home. :(
Q. How long did you have the trach for? At what point were you able to get a speaking valve to talk with the trach?
A. I got the trach just a couple of days after the stroke. It was a big, inflatable kind so I couldn't have a speaking valve. After a few weeks, I got it replaced (fun) with a smaller one and then I got a valve. That thing was super hard so I had to do only a few minutes more each day. I would often pull it off in my sleep. I hated it but it was just one of a million things I hated. About a week and a half before I was to be released, my therapists and Doctors had heard (or seen) enough of my complaints and finally put in a trach button. This was a really small button that kept the opening for a real trach and allow me to try out breathing on my own for a few days before doing anything permanent. That very night I coughed and it came out but none of us caught on until my trach cleaning. By then the hole had already started to close and my Doc just smiled and said to leave it. HOORAY! So I was trach free before leaving the U.
Please feel free to ask away! Others may be private about this, but I want to share it with everyone. The Lord has chosen me to show what he can do and I feel a responsibility to share!!
Friday, June 1, 2012
Party!!
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| He says it's a water whip |
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| Keeping his brother warm. Sweet boy. |
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| Like I said, camera shy. |
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| Bribed her to show how good the cookie was. |
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| Swing, Sito! |
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| Go Sito! |
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| That pinata is bigger than she is! |
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| Playing in the bubbles. |
The whole day my sweets kept checking on me, bringing me water, holding my hand while I walked, and carrying everything, even if it was only a napkin. In a way I wish they didn't have to, but I love that they take care of me!!
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