Johnny,
It's so hard to believe November is almost gone. My anniversary is coming up...19 years...can you believe it? You were 19 when I got married.
Mom spent the day with you. She said that Dr. Thomas came to visit with and check on you. He's the doctor responsible for managing your pump. When you came out of surgery, they had you at a 125 dosage. Dr. Thomas bumped you up to a 175 dosage. He also checked your incision and said everything looks good. He will take off the bandage next week when he comes back and he will probably bump up the pump. That sounds funny! Bump up the pump. Reminds me of that song...pump up the volume, pump up the volume, pump up the volume, dance - dance ... Your welcome, now that song is stuck in you head...ha!
Mom said that she thinks the pain meds the nurses give you is making you sleepy. Your doing a lot of sleeping. They see you grimace or moan and their feeding you pain meds. They really care about you there and one nurse told mom that your a real gentlemen, she can just tell. She introduced you to her little girl (3 years old) one Saturday when Mickey and I had you out front. You told her little girl hi and then she acted shy. It was really sweet.
Love you Johnny! xo Jen
Friday, November 27, 2009
November 26, 2009
Johnny,
HAPPY THANKSGIVING!!!
Mom came up to see you pretty early and stayed until I got there around 1:30 pm. She said when she got there your head was straight...you've been keeping it turned to the left. Your left hand was at your waist and your legs were bending a little. She said you ate strawberry applesauce.
When I got there, you were asleep so I sat next to your bed and looked at the Friday sales papers for the crazy shopping day after Thanksgiving. You woke up and pointed for me to come here. You were mumbling something I couldn't tell what you were trying to say so I gave you the magnets and you spelled "I'm hungry". I gave you some of the pumpkin pie I made you and you ate a few bites and then just rolled it around your tongue. I finally wiped it out of the your mouth because you wouldn't swallow it. I gave you some apple sauce and you ate a few bites of it but then you weren't interested. We watched some tv and looked at the sales papers. I put music on for you and we held hands and listened. Eventually you fell asleep and I left...Cody had to do a clinical at the hospital and he was getting off at 7 pm so we could have Thanksgiving dinner. I really wish you could hear all of his ER stories. I know you'd really get a kick out of them and just to see how much he's grown...you'd be proud.
Well, Happy Thanksgiving little brother! xo Jen
HAPPY THANKSGIVING!!!
Mom came up to see you pretty early and stayed until I got there around 1:30 pm. She said when she got there your head was straight...you've been keeping it turned to the left. Your left hand was at your waist and your legs were bending a little. She said you ate strawberry applesauce.
When I got there, you were asleep so I sat next to your bed and looked at the Friday sales papers for the crazy shopping day after Thanksgiving. You woke up and pointed for me to come here. You were mumbling something I couldn't tell what you were trying to say so I gave you the magnets and you spelled "I'm hungry". I gave you some of the pumpkin pie I made you and you ate a few bites and then just rolled it around your tongue. I finally wiped it out of the your mouth because you wouldn't swallow it. I gave you some apple sauce and you ate a few bites of it but then you weren't interested. We watched some tv and looked at the sales papers. I put music on for you and we held hands and listened. Eventually you fell asleep and I left...Cody had to do a clinical at the hospital and he was getting off at 7 pm so we could have Thanksgiving dinner. I really wish you could hear all of his ER stories. I know you'd really get a kick out of them and just to see how much he's grown...you'd be proud.
Well, Happy Thanksgiving little brother! xo Jen
Wednesday, November 25, 2009
November 25, 2009
Johnny,
Your dedicated mother spent the night with you last night. She wasn't sure how you would handle the pump in your side and was concerned that you may try to rub it. She said she didn't get a whole lot of sleep but that you did. That's really good! She said that you woke up hungry and kept saying eggs over and over until the eggs came and then you wouldn't eat them. Mom said that she asked you if you wanted some orange juice and then she said want some OJ. She said that you said "o" and then real loud "J". She said it was funny. You drank all the orange juice. You weren't interested in doing much other than sleeping. Mom had to run an errand to another doctors office so Mickey came on his lunch hour to sit with you. He said that your speech therapist came in and you weren't interested in doing anything but she did ask you who was visiting you and you mumbled something so she said for you to write it and you wrote Mickey...the clearest you've written anything so far. Of course Mickey took a picture and he's been telling everyone, Johnny wrote my name. He's very proud of your progress Johnny, we all are. We are all so excited to see how you advance with the pump. Beth your physical therapist said that your left arm is very loose and your left leg is bending a lot better.
Mom got your achilles tendon surgery consultation moved up to December 3rd at 4:15pm. Once the doctor sees you, we will set the appointment for your surgery and the nurse said the doctor would work with us in getting it done before the year is up. That's really good news. Then, Janine with Baylor will get approval for you to be taken there post op. They will do the surgery and then cast your feet and the next day they say you'll be able to stand on them. The doctor that did the pump surgery said that he feels strongly that you will be able to walk soon. I just want to scream, I'm so excited for you!!!
I'll see you tomorrow, after lunch. I made you a pumpkin pie. Love you! xo Jen
Your dedicated mother spent the night with you last night. She wasn't sure how you would handle the pump in your side and was concerned that you may try to rub it. She said she didn't get a whole lot of sleep but that you did. That's really good! She said that you woke up hungry and kept saying eggs over and over until the eggs came and then you wouldn't eat them. Mom said that she asked you if you wanted some orange juice and then she said want some OJ. She said that you said "o" and then real loud "J". She said it was funny. You drank all the orange juice. You weren't interested in doing much other than sleeping. Mom had to run an errand to another doctors office so Mickey came on his lunch hour to sit with you. He said that your speech therapist came in and you weren't interested in doing anything but she did ask you who was visiting you and you mumbled something so she said for you to write it and you wrote Mickey...the clearest you've written anything so far. Of course Mickey took a picture and he's been telling everyone, Johnny wrote my name. He's very proud of your progress Johnny, we all are. We are all so excited to see how you advance with the pump. Beth your physical therapist said that your left arm is very loose and your left leg is bending a lot better.
Mom got your achilles tendon surgery consultation moved up to December 3rd at 4:15pm. Once the doctor sees you, we will set the appointment for your surgery and the nurse said the doctor would work with us in getting it done before the year is up. That's really good news. Then, Janine with Baylor will get approval for you to be taken there post op. They will do the surgery and then cast your feet and the next day they say you'll be able to stand on them. The doctor that did the pump surgery said that he feels strongly that you will be able to walk soon. I just want to scream, I'm so excited for you!!!
I'll see you tomorrow, after lunch. I made you a pumpkin pie. Love you! xo Jen
Tuesday, November 24, 2009
November 24, 2009
Johnny,
You got off the ambulance this morning like an old pro! That's so sad that you've been in one enough times to have down the routine! You were wheeled into a room right away and didn't waste anytime telling whoever would listen that you were hungry. I asked the nurse if you could have some lemon swabs and she said sure, that'll be fine. Then, we just looked at each other until I said...could you get me some? She said, oh, we don't have any but if you do, feel free to give him some. What? Crazy! You were all set for surgery and they wheeled you into the operating waiting room. Mom let me sit with you. I think she could tell how nervous I was. When I sat down next to you and took your hand, you were sweating all over and moaning a little. I said Johnny are you nervous? You gave me a thumbs up. I said your going to be okay, you'll go to sleep and when you wake up we'll get you something to eat. Not long after that the doctor came in and we were talking about where the pump would go and how skinny you were and he asked me what I thought about putting in a smaller pump and I said, hold on....I can't make that decision. I wanted to scream MOMMA but I didn't, I just went and got her as fast as I could. When I got back, you looked very nervous. I was really wishing they had given you a little something to relax you...maybe it was me that was nervous!
While you were in surgery, we sat in the waiting room for what felt like forever! Mom was Mrs. Timex, looking at her watch and giving us...it's been an hour...updates. Ha! We also could see inside the window through to the surgery office so she would say, oh here comes someone...never mind, it's not the doctor. Truth is, she was nervous too!
Your waiting visitors: Mom, Me, Mickey, Cody, Jackie, Dad, Diana, Robert, Brother Grady, Sandra.
Dr. Koneon came out and said that you did really good and that we could see you in about thirty minutes. By the time we got to your room, you were having your vitals taken and getting all situated. You were waking up from the anesthesia but it was definitely a slow process. To me you looked pale but by the time I left, you looked more like yourself.
Dr. Koneon decided to down size the pump for sure when he got into surgery and saw that you have absolutely no fat on your body. He said he's never seen anyone with so little fat. Hmmm, must suck...kidding! That's just the bitter sister with the other genes!! ha! The pump he put in was 20cc and half the size of the original one. This means that the pump will have to be refilled every 2-3 months instead of the 6 months we were originally told. But, it is the best thing for you. They put the pump on the right side of your belly button and ran the tube around your right side and along side your spine. He thinks he got the tube high enough to effect your arms. The pump sets under the skin like a blanket over a hockey puck, not like saran wrap, so the edges of the edges around the pump have room there. Any kind of rubbing or irritation can possibly move the pump although it is stitched to the fibrous tissue above the muscle. This is a concern and we will have to come up with a solution if you begin to mess with it. You did so good with the surgery, we could certainly feel the prayers that were being lifted up for you!
Shortly after Cody, Jackie and I left, the ambulance came and took you and mom back to Traymore. When I called to check on you, mom said that the nurse was hooking up your feeding tube...I'm sure that'll feel better, to get something in your tummy! I'm not positive, but I think mom is spending the night tonight because she's worried that you might mess with the pump because it's so new and it's starting to bruise. The nurse gave you some pain medication so that'll help you sleep, maybe if mom decides to spend the night, she can sleep too. Maybe I can talk her into spending the night at my house. In any event, you will see her smiling face when you wake up in the morning.
Love you Johnny! I'm so proud of you little brother!! xo Jen
Pictures of your Mary Stiles Visit:
Your ride...
Coming out of the ambulance
Before surgery
After surgery
The installed pump
You got off the ambulance this morning like an old pro! That's so sad that you've been in one enough times to have down the routine! You were wheeled into a room right away and didn't waste anytime telling whoever would listen that you were hungry. I asked the nurse if you could have some lemon swabs and she said sure, that'll be fine. Then, we just looked at each other until I said...could you get me some? She said, oh, we don't have any but if you do, feel free to give him some. What? Crazy! You were all set for surgery and they wheeled you into the operating waiting room. Mom let me sit with you. I think she could tell how nervous I was. When I sat down next to you and took your hand, you were sweating all over and moaning a little. I said Johnny are you nervous? You gave me a thumbs up. I said your going to be okay, you'll go to sleep and when you wake up we'll get you something to eat. Not long after that the doctor came in and we were talking about where the pump would go and how skinny you were and he asked me what I thought about putting in a smaller pump and I said, hold on....I can't make that decision. I wanted to scream MOMMA but I didn't, I just went and got her as fast as I could. When I got back, you looked very nervous. I was really wishing they had given you a little something to relax you...maybe it was me that was nervous!
While you were in surgery, we sat in the waiting room for what felt like forever! Mom was Mrs. Timex, looking at her watch and giving us...it's been an hour...updates. Ha! We also could see inside the window through to the surgery office so she would say, oh here comes someone...never mind, it's not the doctor. Truth is, she was nervous too!
Your waiting visitors: Mom, Me, Mickey, Cody, Jackie, Dad, Diana, Robert, Brother Grady, Sandra.
Dr. Koneon came out and said that you did really good and that we could see you in about thirty minutes. By the time we got to your room, you were having your vitals taken and getting all situated. You were waking up from the anesthesia but it was definitely a slow process. To me you looked pale but by the time I left, you looked more like yourself.
Dr. Koneon decided to down size the pump for sure when he got into surgery and saw that you have absolutely no fat on your body. He said he's never seen anyone with so little fat. Hmmm, must suck...kidding! That's just the bitter sister with the other genes!! ha! The pump he put in was 20cc and half the size of the original one. This means that the pump will have to be refilled every 2-3 months instead of the 6 months we were originally told. But, it is the best thing for you. They put the pump on the right side of your belly button and ran the tube around your right side and along side your spine. He thinks he got the tube high enough to effect your arms. The pump sets under the skin like a blanket over a hockey puck, not like saran wrap, so the edges of the edges around the pump have room there. Any kind of rubbing or irritation can possibly move the pump although it is stitched to the fibrous tissue above the muscle. This is a concern and we will have to come up with a solution if you begin to mess with it. You did so good with the surgery, we could certainly feel the prayers that were being lifted up for you!
Shortly after Cody, Jackie and I left, the ambulance came and took you and mom back to Traymore. When I called to check on you, mom said that the nurse was hooking up your feeding tube...I'm sure that'll feel better, to get something in your tummy! I'm not positive, but I think mom is spending the night tonight because she's worried that you might mess with the pump because it's so new and it's starting to bruise. The nurse gave you some pain medication so that'll help you sleep, maybe if mom decides to spend the night, she can sleep too. Maybe I can talk her into spending the night at my house. In any event, you will see her smiling face when you wake up in the morning.
Love you Johnny! I'm so proud of you little brother!! xo Jen
Pictures of your Mary Stiles Visit:
Your ride...
Coming out of the ambulance
Before surgery
After surgery
The installed pump
Monday, November 23, 2009
November 23, 2009
Johnny,
Mom has spent all day with you. I'm sure she feels like I do right now...we have waited so long for you to have the surgery and now that it's here, I'm scared. I know this is the best shot you have at furthering your recovery and I have faith that the right decision was made. I'm just scared...I don't want you to be in pain. You have been through so much Johnny and you deserve this! You deserve for it to go right! You deserve for it to be a success!
I'll be praying for you tonight and tomorrow. I've sent out prayer requests for you. I have faith that your name will be lifted by many. I'll be praying for the doctors and nurses performing your surgery and taking care of you. I'll be praying for the ambulance driver and the paramedics. I'll be praying that your body accepts the foreign materials in you. I'll be praying that your recovery is fast and pain free.
I love you Johnny! xo Jen
Mom said that she took you outside to do some birdwatching today. Then she took you to the 2nd floor for therapy. You ate chocolate pudding and strawberry applesauce.
Mom said that your not running fever so we're ago for surgery tomorrow. Mom also said that she gave you a spiral and pen to draw with and when you were done, you took your pen and stuck it into the spiral...that is absolutely amazing! We take the ability to do these simple tasks for granted! I'm celebrating with you Johnny...you are amazing!
Mom has spent all day with you. I'm sure she feels like I do right now...we have waited so long for you to have the surgery and now that it's here, I'm scared. I know this is the best shot you have at furthering your recovery and I have faith that the right decision was made. I'm just scared...I don't want you to be in pain. You have been through so much Johnny and you deserve this! You deserve for it to go right! You deserve for it to be a success!
I'll be praying for you tonight and tomorrow. I've sent out prayer requests for you. I have faith that your name will be lifted by many. I'll be praying for the doctors and nurses performing your surgery and taking care of you. I'll be praying for the ambulance driver and the paramedics. I'll be praying that your body accepts the foreign materials in you. I'll be praying that your recovery is fast and pain free.
I love you Johnny! xo Jen
Mom said that she took you outside to do some birdwatching today. Then she took you to the 2nd floor for therapy. You ate chocolate pudding and strawberry applesauce.
Mom said that your not running fever so we're ago for surgery tomorrow. Mom also said that she gave you a spiral and pen to draw with and when you were done, you took your pen and stuck it into the spiral...that is absolutely amazing! We take the ability to do these simple tasks for granted! I'm celebrating with you Johnny...you are amazing!
November 22, 2009
Johnny,
Mom came to visit with you after church. She said that Buddy and Stanley had been there to see you. Mom said that you had pudding today and that when she suctioned you she suctioned out cake. Then she found a note from your speech therapist that she had given you cake before mom got there. It sounds like she didn't suction you after she gave you cake...that's not good. With your surgery coming up on Tuesday, we need to prevent you from getting pneumonia. I'm sure mom will address that with her on Monday. Buddy called mom because he was concerned about how cold your room was. I'm praying along with everyone else that you get the surgery on Tuesday and that it's successful! There is no other option!
Love you!! Xo Jen
Mom came to visit with you after church. She said that Buddy and Stanley had been there to see you. Mom said that you had pudding today and that when she suctioned you she suctioned out cake. Then she found a note from your speech therapist that she had given you cake before mom got there. It sounds like she didn't suction you after she gave you cake...that's not good. With your surgery coming up on Tuesday, we need to prevent you from getting pneumonia. I'm sure mom will address that with her on Monday. Buddy called mom because he was concerned about how cold your room was. I'm praying along with everyone else that you get the surgery on Tuesday and that it's successful! There is no other option!
Love you!! Xo Jen
Sunday, November 22, 2009
November 21, 2009
Johnny,
Mickey and I came to see you today. When we walked in your room, you were sound asleep. I whispered in your ear, Hi Johnny and you eyes opened and you said hi. I took off your glove and got you all situated and then you acted like you wanted to write. I gave you pen and paper but couldn't understand what you were writing so I got your magnets. You spelled, my tummy hurts. I figured out that you were hungry. I'm not sure how true that is because you have a feeding tube but I know you enjoy eating. I fed you a whole jar of blueberries and apples and a whole small jar of turkey and gravy. You did really well because when I suctioned you there was nothing there.
A little later, you spelled, want pants. I said do you want me to put your pants on and you gave a thumbs up. Mickey and I put on your pants and you were ready to go for a walk. I think you associate your pants with the wheelchair and the wheelchair with Mickey and I. Anyway, it was very smart! We took you for a ride all downstairs and then all upstairs. You fell asleep. When we got back to your room, we put you back in bed but you wanted to leave your pants on.
We had a really good visit with you!! xo Jen
Right after we left, Buddy came by to visit. After Buddy left, mom came by. You had visitors all day.
Mickey and I came to see you today. When we walked in your room, you were sound asleep. I whispered in your ear, Hi Johnny and you eyes opened and you said hi. I took off your glove and got you all situated and then you acted like you wanted to write. I gave you pen and paper but couldn't understand what you were writing so I got your magnets. You spelled, my tummy hurts. I figured out that you were hungry. I'm not sure how true that is because you have a feeding tube but I know you enjoy eating. I fed you a whole jar of blueberries and apples and a whole small jar of turkey and gravy. You did really well because when I suctioned you there was nothing there.
A little later, you spelled, want pants. I said do you want me to put your pants on and you gave a thumbs up. Mickey and I put on your pants and you were ready to go for a walk. I think you associate your pants with the wheelchair and the wheelchair with Mickey and I. Anyway, it was very smart! We took you for a ride all downstairs and then all upstairs. You fell asleep. When we got back to your room, we put you back in bed but you wanted to leave your pants on.
We had a really good visit with you!! xo Jen
Right after we left, Buddy came by to visit. After Buddy left, mom came by. You had visitors all day.
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