Some more Communication Book Notes.....

(10/7/97) A new nurse working with me wrote this: "Thank you for the welcome note Pat-it felt great. (Primary nurse) Mom & Dad were very welcoming also. I'm usually a little apprehensive the first night on a new job-I don't think it has ever been so pleasant. I think I'll fit right in "Jared's team". (My note: These kinds of things is what makes the nurses taking care of me in our home so worthwhile. This is one of the things I loved about life.....genuine KINDNESS!)

(1/14/98) Mommy wrote a note that said: "Jared loves his new toy he got for Christmas. It's the TV Teddy. If you play a video, play TV Teddy's videos once in a while. TV Teddy interacts with the video. Jared likes to watch Teddy and the video....huge smile on this boy's face." (My note: I remember Mr. Teddy...he really made me laugh...he was another good friend!)

(6/6/98) Daddy wrote a note that said: "Hi. It's Dad, this is my bimonthly note. Jared and I had a great time alone tonight. Jared got the slow tour of the house tonight instead of hanging out in the dining (Jared's) room. First, we checked out his other room (upstairs). He loved it. Then to the bathroom and back room. Then he got his first waterbed experience. He realized he could make the bed move by kicking-he didn't stop. (Sorry about the sloppy writing, but frankly I don't care.) Dad" (My note: Oh...just thinking of me and my dad together gives me so much JOY inside....that's what it was always like for me with my dad around.....HAPPY, HAPPY, JOY, JOY...Daddy showed me that also.....REN & STIMPY!)

(7/2/98) Mommy wrote a note that said: "Be careful putting Jared in his new wheelchair. I almost dropped him tonight when I stuck him in it." (My note: MOMMY"S CRYING CUZ SHE"S THINKING.......Awwwww Mommy....its OK.....you always did try your best with me....I know right now that I'm not physically with you and I see that you beat yourself up for all the times you tell yourself....IF ONLY I TRIED A LITTLE HARDER......I hear you say that all the time now....YOU DID YOUR VERY BEST AND I LOVE YOU SO MUCH FOR THAT. I WILL ALWAYS BELIEVE IN YOU....YOU WERE AND ARE MY MOM WHO BELIEVED IN ME TOO....IT WORKS BOTH WAYS. I LOVE YOU...STOP CRYING OVER ME MOMMY....I'M REALLY OK....YOU SHOULD SEE IT.....IT'S BEAUTIFUL UP HERE!)

(9/11/98) Daddy wrote a note that said: "Hi. Dad here. Mom's out for the the night but will be back before 3 tomorrow. Jared had a good night. He spent about an hour and a half outside and then he relaxed with me for the rest of the night. See ya. Eric." (My note: LOVE LOVE LOVE Daddy and I time!)

(1/10/99) Mommy wrote a note that said: "Jared out in recliner until about 8pm. Earlier, Jared pulled his tubing off of himself and threw it on the floor. Could it be that he doesn't want it anymore?! Little Stinker!" (My note: Yes Mommy....and No Mommy...I didn't want it and I did...but I enjoyed PLAYING THESE GAMES with you!)

(2/3/99) Mommy wrote a note that said: "Jared has been disconnecting himself a lot lately. He pulls the tubing off and waves it around like it's nothing---and laughs about it! Keep an eye on him now, more than usual, because he will pull a fast one!" (My note: HAH...Gotta love it!)

(4/20/99) Mommy wrote a note that said: "Jared out on recliner until 6:30pm, and then he sat in Daddy's lap on recliner and then he was on the floor with me sitting between my legs with very nice head control! Also, Jared will be starting school on Tuesday, May 11th. He will go 3 days a week (Tuesday, Thursday and Friday's) from 9am-2:30pm. We are trying a full day with him for at least a month just to see how he tolerates it. If it's not for him, we will take it down to half a day (from 9-11:30). He will have Music Therapy on Thursdays at school. Eric and I will be going with him on his first day. Thanks Mom & Dad." (My note: What a time that was...a NEW chapter in my life....SCHOOL...and I was so glad that Mommy and Daddy came with me for my first school experience!)

(5/11/99) Mommy wrote a note that said: "Jared tolerated his first day of school very well. However, the last hour of the day, he started getting fussy. He also didn't like the "pudding painting" that he did while there. He didn't like putting his hands in the pudding and he definitely didn't like rubbing his hands in it. Once he gets used it (stuff like that), it may not be so bad for him. He also sat on the bean bag chair for awhile and it was relaxing for him-so he was kind of lazy in it. We put him in his wheelchair and he went outside the school and we put him in the wheelchair swing. After that, he started getting tired. Overall, good day, but somewhat long for him." (My note: I still loved trying new things.)

OK...there are still more notes I want to tell you about...I know there are so many of them.....but these are the days of my life...they need to go somewhere so I think this is the best place for them right now.....come back soon!

Communication Book Notes written by my Nurses.....

(7/19/96) Supervisor that came out to the house wrote: "Jared's weight was 16 lbs. Mom had no concerns. Mom told me how good of a job we're all doing. Gerard is as cute as ever!" (My note: My name is J-A-R-E-D....not G-E-R-A-R-D......I don't like that name, but it's okay, you all were just getting to know me...so thank you anyway.)

(7/20/96) My primary nurse Pat wrote a note saying: "How about this "classy little guy" listening to classic station for sleep. (My note: Thank you Pat for loving me so much....I will always love you....you were my very first homecare nurse and you did a GREAT job taking care of me....I took that to HEAVEN and I'm holding you here with me now....Love you so much.)

(8/1/96) Supervisor Holly wrote: "Jared has been home for 1 month! He looks great and is really growing. Mom is very happy with all the nursing care. Thank you all." (My note is the same...Thank you all.)

(8/23/96) (I just came home from my first admission to DuPont) Supervisor wrote: "Informed Mom & Dad that there is no nursing coverage available until Monday morning. Mom was aware of this when Holly spoke to her yesterday prior to discharge. Mom & Dad feel comfortable with caring for Jared and child is at no harm or risk without nursing coverage." (My note: It's okay if you all leave me alone with my mom and dad...THEY know just what to do and when I need it.)

(9/30/96) Supervisor wrote: "Jared is a lot of care-anything the nurses do helps the nurses on all shifts. Please help to make it easier for the day nurse so she can spend more time with Jared and less time on stocking supplies, cleaning and maintenance." (My note: I know some of those night nurses were becoming a little lazy as Mommy told me once...especially one specific nurse as Mommy also said.)

(NO DATE) Primary nurse Pat wrote a note to a new nurse orienting to my case: "Welcome! Jared's mom will be home on Saturday-but we let her sleep in the morning as she does a full shift 3-11 besides her regular job. Mom is very good about any questions and doesn't mind if you ask. She's a great help if you get stuck. Bedroom upstairs-1st door on the left. Bathroom straight ahead. Neither she nor Dad mind helping to get Jared into his swing or stroller. Both parents are very knowlegable and always ready to help. Have a good day and welcome to the group." (My note: My nurse Pat always made everyone who came into our home so welcome like this and it always made me feel so good to know a person like her. Thanks again Pat.)

(NO DATE) A new nurse (Diana) working with me wrote: "Dear Karen and Eric, thank you for the honor of taking care of your little cherub. We had fun today. I read 3 stories to Jared that I brought with me and he watched the book with interest." (My note: Yes....I remember how much FUN I had with you then....Thanks for reading to me Diana.)

(4/16/97) Nurse wrote a note that said: "Grammie brouught over a small piano for Jared. He loves to play with it. He bangs keys with another toy." (My note: I loved the toys that my Grammie always brought over for me when she came to visit...Thank you Grammie..I love you.)

(4/21/97) Nurse wrote a note that said: "Jared likes his new snug seat. He also likes to sit in his stroller by the front door to look outside and the back door also." (My note: Although it was hard for me to do new things...my family and nurses always found something NEW for me to do anyway....thanks everyone.)

(5/2/97) Nurse wrote a note that said: "Jared is nice and healthy with beautiful cheeks and thighs. Keep up the good work everybody!" (My note: What a team you all were with me...No wonder I lived a good life!)

(6/25/97) Nurse wrote a note that said: "Jared tolerates being in his chair for up to 1 hour now. You all should be getting him out of bed and in his chair or swing daily. If you use bean bag chair, use the stroller ventilator so he's able to have change of scenery. He likes to sit at front door and he also loves to watch his Toy Story and other videos in his swing." (My note: Toy Story was definitely one of my favorite videos to watch. Thanks for getting it for me Mom & Dad.)

(6/27/97) Nurse wrote a note that said: "Jared was very happy today, kicking and dancing around in his crib and chair. He is also giving high 5's and blowing kisses, as well as throwing his toys out of the crib. When OT (Occupational Therapy) came @ 2:15, Jared ACTIVELY particpated with the therapist." (My note: Yes, I was becoming (as Mommy called me then) a "little stinker". Mommy said that's when I got an ATTITUDE!)

(9/6/97) Nurse wrote a note that said: "Jared was out of bed in the bean bag chair watching Toy Story and playing with nurse, kicking his feet on floor." (My note: I just realized that I did have a little MUSCLE anyway!)

Well...there's a few more notes that I want to tell you all about...Nurses and Mom & Dad's....so come back soon for more of them. Thank you for visiting me today, everyone.

Communication Book Notes by Mom & Dad...

Well, as I was saying in a previous post, Mommy and Daddy and the nurses use to write notes back and forth about what my day was like for that person or how many diaper changes, meds given, activities we did, or just whatever someone wanted to write to another about my care. Here are a few notes Mommy & Daddy wrote (mostly Mommy did the writing):
-(7/19/96)Mommy wrote "Jared was watching his videos today. He really enjoyed them. He should watch them more often. He also came out to the recliner in the living room with me for about 30 to 35 minutes." (My note: I'm so glad that Mommy and Daddy showed me those videos because they brought so much joy to my life til the end. I couldn't do much because of my muscular disease but I could see that Mommy and Daddy ALWAYS gave me just what I needed to make me happy and that will always be something that I carried back to HEAVEN with me.)
-(8/6/96)Mommy wrote "Jared had a good day. His cousin, aunt and grandfather came over to visit. Jared loved the company. He was out in the swing, on the floor and in his stroller." (My note: I was born a month after my cousin, Marissa, and I always looked up to her. I remember how she use to sit beside me on the floor and she would brush my hair and I was just glad for her company. She made me smile a lot, but so did many of those who knew me and that is just another piece of my life I carried with me to HEAVEN.)
-(9/1/96)(UH-OH!)Mommy wrote: "Someone keeps leaving hardly any formula in the container. It's always half empty when I go to get it. Please make it up if it's almost gone. Don't leave it empty just because it's the END of your shift." (My note: Hmmm, who was doing that?...Mommy told me that she always got mad at the little things like that because she was at a time in her life when she was depressed because of my disease and it hurt not being able to do ANYTHING about it. I say to Mommy now....Oh, but you and Daddy gave me so much and NEVER really knew it until I was gone.)
-(10/21/96)Mommy wrote: "Jared is content with his new toys. He loves Donald Duck and his Musical Dream Screen. He also likes to watch his Tickle Me Elmo vibrate." (My note: This was the day after my first birthday and I LOVED all of my gifts you all brought me. I couldn't ever really say Thank You but I am now...Thanks everyone!)
-(10/24/96)Mommy wrote: "Jared went for a walk outside. He enjoyed the fresh air and the outside environment. He was very happy and awake the whole time. He didn't miss a thing!" (My note: I just enjoyed the walks with my Mom and Dad. I think we all enjoyed just being with each other. Mommy and Daddy did whatever they could to make our not so normal life a NORMAL one.)
-(NO Date-Daddy didnt write dates)Daddy wrote: "TO ALL NURSES, I'm not writing in red because of my mood, I'm writing in red because it's the only pen I could find. Get the point. If you don't, you will. As far as Jared goes, he had a rather pleasant night. All meds and feeds were given timely and he had 3 diapers, all saturated, 1 heavy, 2 medium. That's about it for him; now for the rest of you 1 2 3 4 5 These, my friends, are numbers. We put these things on cans of formula. We do this to keep order. This is called numerical order. When delivering feeds, you will follow this order. The even numbers have fiber. The odd numbers don't. I'm explaining this quite simply because a few of you just don't get it. My son will not be constipated because a few of you are being lazy. What this comes down to is please do it properly or please take a walk. Thank you, men & women. I fully appreciate everyone's help---really. Eric" (My note: Daddy didnt mess around, what he says goes, he's my one and only DADDY! Always looking out for me!)
-(2/9/97)Mommy wrote: I had a rough evening with Jared. He was out in the living room on the recliner. Later, as I was carrying him back to bed, I tripped over a cord and Jared & I fell to the floor. (It scared the life out of me!)Luckily, Eric was here. He helped me get Jared back to bed. I should have waited for Eric to get him like he said, but no, I liked picking him up because that was really the only time I had him that close to me. It took a little while to calm Jared down. His saturation levels kept dropping in the low 80's. We put ice under his head for a little while just to be sure he was okay. Finally, after about an hour later he was calm and watching a movie." (My note: I still love you Mommy for trying to lift me all those times you did. After all, you were only 50 pounds more than me!)
Well those are just a few notes that Mommy and Daddy wrote in the Communication Book...come back again to see what some of the nurses wrote. See ya soon!

Good to be back...

Hi everyone. It's good to be back here. Mommy and Daddy have been on vacation so that's why I haven't been here to post anything. Mommy said that she will be posting something this week when she puts all of her notes together for me. Look for Communication book Notes in the next few days. Thanks for sticking around for me. See ya's soon.

From hospital to HOME!

When I was born, Mommy & Daddy were living in an apartment. They were living here above this Century 21, next to the dance studio:
They knew that now they had to find a house before I came home, because I needed the space with all the medical equipment and room for the homecare nurses and things like that. After a little bit of time househunting, Daddy and his realtor friend (who we met in Delaware County Hospital NICU), found our family a good home to live in. (Thanks Daddy and Jeff) This was our new home: Mommy always stayed with me in the hospital while Daddy took the time to find a good house. She wanted to get the best learning she could in order to be a good mom as well as nurse.
Well, it was at the end of June 1996 when I was finally ready to get out of this hospital and home to my family. (Mommy said she was waiting for this day to come for many LONG months!) Specialists came out to make sure our home passed inspection to have a homecare patient on life support reside here. There was also a nursing agency there at my house as well as a medical equipment company. There was a lot of people at my house for my homecoming. There was even a company called the Pennsylvania Ventilator Assisted Children Home Program. (They were a group of medical professionals that offer many ways of assisting patients on ventilators and their families to make living a little easier.)
Mommy was so excited as nurses and staff were getting me ready to go. Of course, I was just a baby (8 months old)and I didn't know at the time what was going on but I did know that my mom was there and it was going to be okay because she was sticking by me. Daddy was at home with all the people in our new house getting last minute things set up there. Mommy rode in the ambulance with me. We pulled up to our house and my grandpop Joe was holding a videocamera as Mommy got out of the ambulance and then came ME. I WAS FINALLY HOME! Mommy said that I was looking all around, and probably wondering what was going on (I was) She said that she knew that I was very happy. (She called it a heartwarming moment.)Mommy said she was a little nervous for me because the only home I ever knew was the hospital.
When the EMT's got me all set up in the house, everyone that was there came over to my crib to look at me and welcome me home. Here is a picture of me a couple of days after I came home: They all wanted to see my reaction to my new environment. Mommy said that I was smiling every couple of minutes. She said that there was nothing like this moment and that she felt so much JOY for me.
My room became what would have been the dining room to a 'normal' family home. Mommy and Daddy said that my room had to be easily accessible for medical equipment and we had to have space for nursing, so that's why they chose to make the dining room my room. Mommy said that nurses could watch me if they were in the living room. Mommy and Daddy just used the coffee table in the living room as their eating spot. Mommy and Daddy did what they had to do to make sure that everyone was comfortable. Mommy said that it worked out well, even though it was a little awkward having people in our house all the time. Mommy never really did get used to it, but right now she misses it so much and she said that you never really know what you have until it's gone. She said she would do anything to have that back again.
Some of the medical equipment that I came home with were 2 ventilators (1 was for my bedside and the other was for going places in my wheelchair), 2 oxygen tanks, a feeding pump, a pulse oximeter, 2 suction machines (1 for my bedside and 1 portable), and a few other things as well as medical supplies (syringes, catheters, gloves, trach ties, tubing for the ventilators, saline, sterile water, and so much more). Here are my supplies, upstairs, where they were kept when I came home: We got supplies brought to our house every month and someone from the medical equipment company came out once a month to check all of their equipment to make sure that everything was working the way it was supposed to for me.
Well it was really good to be in my nice quiet home with my family. Nurses were usually always good with me, if not Daddy would give them a hard time because they were there to do a job and my life depended on them when Mommy and Daddy weren't around. I had a homecare nurse with me for 16 hours of the day. Their shifts were during the day at 7am to 3pm....Mommy and Daddy had me all to their self from 3pm to 11pm...and a night nurse came in from 11pm to 7am so Mommy and Daddy could get some sleep. Mommy said that every now and then a nurse would call out and she hated it because she was always really exhausted. Daddy and Mommy always 'split the shift' so they both could get a little sleep, even though they had to be at work the next day.
The nursing agency came up with the idea to have 'communication books' for everyone to write anything that they wanted others to know regarding my medical care or whatever else they wanted or needed to say to others for whatever reason. Most of the time, Mommy would write how my day went or how many diaper changes I had and things like that so nurses could keep track of it in my homecare chart. Mommy said that most of the time that she was writing my book, she used all of those books to 'remember' things that she might have forgot otherwise. She told me that she never knew why she wanted to keep all those communication books, but she always knew there was a reason and now she found that reason.....for writing the story of my life! Well, Mommy said that she is now at the spot where she left off in my book before she started my blog, so it may take her some time to do some writing, but she will continue updating my blog chapter to chapter. She said to come back and read some of the communication book notes that were written by her, Daddy and some of the nurses...because some of the notes were sometimes mean, but good, because now she just laughs at some of them. Come back soon!

More to come....

Hi readers of my blog....Mommy said that she apppreciates all of you...we know that it's been a while since we've posted anything. She had a busy weekend....now she has to go back into her word processor....(Mommy is writing a book about my life but the book is based on Mommy's thoughts of raising me...so she needs to edit some of her words to make some words mine....she said bare with her.) Please come back soon for my journey to HOME!

My New NICU Home....

So,Mommy and Daddy got to the new hospital where I already arrived with the EMT's. Mommy said that when she and Daddy got up to the desk...they said that I wasn't there yet, they couldn't find my name. After a little searching, they found me, I was under Jared Smith, (Mommy's maiden last name) instead of Jared Griffin. The insurance had me as Jared Smith Griffin. Mommy and Daddy told them to leave it that way for now...so that was what they called me here.
I was up on the Eighth Floor in the NICU waiting for them to come. The nurses were setting me all up when they came in. There were all kinds of people here...a lot of tiny babys who looked like they all just needed some loving. Mommy said that the whole time that we were in there some of the mommies never even came in to see the tiny babies.
Mommy called this hospital her home away from home because this is where she spent most of her days. She told me that she rode the train up in the morning while Daddy was at work and then Daddy came to see me after work. Mommy said that her and Daddy put some music on(lullabies)at night and they put a blanket over my eyes to block out the lights in the hall. They would sit in the chairs next to my bed and wait for me to fall asleep and then they each gave me a kiss goodnight and then they rode home together on the train. Mommy said that now she wouldn't trade it for the world. She told me that on some weekends her and Daddy's friends would pick them up a little early and they would all go out to eat at a place called Doc Watson's in Philadelphia. She said that was their "couple time" and that they needed it once in a while because even though they loved me so much....the hospital surrounding was a little depressing and that everybody needs a little time for themselves. Mommy said that she always came in the next day refreshed....she was ready to take on the world.
My uncle Dave (my Mommy's brother)was being seen by a neurologist at A.I. Dupont Hospital in Wilmington, DE for a disease that he had called Charcot Marie Tooth Disease. Since the hospital that I was in was affiliated with DuPont, Mommy and Daddy wanted this neurologist to examine me to see if the disease I had was related to what Uncle Dave had. Mommy contacted the doctor and he agreed to come down and examine me. It ended up that what I had was not at all related to what Uncle Dave had. Uncle Dave's disease was more of a nerve disorder, and this neurologist said mine was a muscular disorder.
Mommy said that while I was in the hospital, I had 2 muscle biopsies done and neither one of them showed what I had. Doctors just told Mommy and Daddy that I had a 'rare' muscle disease. Mommy said that it got to be 'nerve-wracking' when people asked what was wrong with me and she didn't have any idea. After 2 months, doctors still didn't have a diagnosis.
Mommy said that days just came and went over the next few months and there were a lot of ups and downs. She said that she was sitting there with me one day and I just started having seizures and then I started getting them a lot. The doctor put me on medicine to control them. Mommy said that it was scary when I had a seizure, so she was glad that the medicine was calming them down a little.
Over the next few days, doctors were talking to Mommy and Daddy about me getting a tracheostomy (that was an operation where they would cut a hole in my trachea for insertion of a breathing tube)and a gastrostomy (an operation to create a small opening in my stomach for feeding and nutrition). They would do both of these surgeries at the same time. Mommy and Daddy agreed to the surgery which was done on February 8, 1996.
While I was in the NICU, I also got a lot of infections that were really contagious. When I got an infection, Mommy and Daddy and everyone else who came near me had to wear hospital gowns, gloves and masks. Usually, I had to be in a room by myself which they called an isolation room. It protects other people from getting the infection that I had, and to make sure that the infection wouldn't be carried to another patient.
Every now and then, the hospital would call for "family meetings" for the patients and their families. Mommy and Daddy had a few of those with the doctors. They would talk about my medical care. Mommy said that they told her and daddy that since they still didn't have a diagnosis, they couldn't tell them how long I would live. They told Mommy and Daddy that I probably would always need life support and special medical care. They even asked Mommy and Daddy if they wanted to "let me go". They both told the doctors that they loved me and that they weren't giving up on me. I love Mommy and Daddy. I think I was born to love them back and I plan on staying longer than those doctors think. The doctor told mommy and daddy that they would need to learn all of my medical care so they could take me home from the hospital. So, that's what happened next, they made plans to move me to another floor in the hospital called the Rehab Unit and that's where Mommy and Daddy would learn all my hard work. Mommy said that it took a few months for them to learn. Mommy said that the nurses told them to "take over" my care while I was here in the hospital, that way there is always someone around to help them or answer their questions, and to make sure Mommy and Daddy were comfortable taking care of me. They even had to take and pass a CPR class before I could come home.
Well...the day arrived that they were comfortable taking me out of the hospital and to MY HOME that I have never been. If you want to hear about my journey HOME, you have to come back here to my blog....thank you for reading and I'll see ya soon!