Saturday, January 29, 2011

Friday, January 28th, 2011

With only a few days until surgery, Mommy snapped a before view from the side that you can use to compare later during the distraction process.  I am not going to sugar coat it, this surgery will be difficult, but there is no denying how dramatic the results will be.  You can actually still see the small scar from my last jaw distraction.  Since this will be external rather than internal my parents aren't sure what scars I will be left with this time.

Thanks to everyone who offered up their space heaters and their homes.  We are very grateful that the furnace was replaced yesterday. 

We received a call this evening from Primary Children's and I am the first case up Monday morning.  We are checking in at 6 am, I am supposed to head back at 7:30 am and surgery is scheduled for three hours. 

Everyone please cross their fingers that I will wake up a little more slowly than usual after surgery. I have not been willing to participate and have not had an echocardigram for two years.  Although my aortic valve disease is considered mild to moderate it is always a little concerning when it comes time for surgery.  My cardiologist is sending a technician to the PACU so hopefully when I am out of surgery they will have time to complete the echo before I start waking up.  Although it will be after the surgery is over, it would still be nice to have a recent one.  This is espescially important to Mommy right now as one of her co-workers passed away unexpectedly Thursday morning and there is a possibility the death was as a result of something with her heart.  Mommy hasn't worried too much about my surgery up until now but the news of Nicole's passing has shaken her up.  Because I will be inpatient for most of the week, she will probably not be able to attend the funeral but she will be thinking of Nicole, her family and everyone at work. 

I may get a chance to meet up with my cousin, Gavin at Primary Children's on Thursday if I haven't been discharged yet.  Thursday night he had surgery to place three pins where he broke his elbow.  He is in a splint now but he is coming back on Thursday of next week to have the cast placed.  

Mommy will try to update the blog quickly with information on how I am doing, where I am staying (PICU or regular floor) and if I am up to receiving visitors since I know many people want to stop by and say "hi".  

Peyton Nicole Smith

Wednesday, January 26, 2011

Wednesday, January 26th, 2011

A note from Mommy:

A Yahoo group I belong to were discussing ultrasound photos recently and so I am posting a few of Peyton's here. We thought they looked a little strange and it wasn't until weeks later that someone explained that her jaw was very small. What is really weird is we can actually tell her hand anomolies based on some of these photos - but after multiple ultrasounds by multiple technicians not one of them ever identified them. In addition, you can clearly see the cord wrapped around her neck. I read the operative report later from the C-section and found out it was actually wrapped around her neck twice which explained the decelerations in her heart rate and the emergency C-section.

Monday, January 24, 2011

Monday, January 24th, 2011

With the long cold weekend hanging out in one room in the house, my parents saw how much I enjoy puzzles. I had gotten one for Christmas from Grandma and Papa Smith. Than my night nurse, Michelle brought over two more after cleaning out her son's room. Each night I can spend hours taking them apart and putting them back together. As you can see when I fell asleep last night I hadn't quite finished it!

Mommy stayed home from work today to meet the HVAC technician. He showed up around 9:30 and after about 20 minutes let Mommy know that there was indeed a problem. The heating unit was cracked and it was a good thing Daddy had turned off the gas as it would have been leaking. The technician said there were three options - the warranty company could request a 2nd opinion, replace just the part of replace the entire furnace. He expected we would hear back from them with an answer within about two hours. About four hours later, Mommy got a call from the HVAC company and she sent them Daddy's way. He called back a few minutes later with the good and bad news. The good news is the warranty will cover the cost of the furnace. The bad news is it won't cover any of the costs associated with replacing the furnace - new duct work, removing the old furnace, etc. to the tune of $1200. In addition, it will take 3-4 business days for the new furnace to come in which places the day to replace it smack dab on the day of my jaw distraction (and also means a long week without heat). The HVAC company said they would try their best to have it by Friday so that we could get it replaced before my surgery but it's not looking so good.
So let's all collectively cross our fingers that the furnace arrives in the next few days and the pipes hold out!
On an interesting note, a few days ago Daddy spelled out my name with my magnet letters. Tonight I decided to mix them up and try to spell my name on my own - as you can clearly see - I am obviously brilliant because I figured it out. Then Daddy spelled out my last name for me and once again I mixed them up and put them back in the right order. Who needs Your Baby Can Read?

Peyton Nicole Smith

Sunday, January 23rd, 2011

A note from Mommy:

Kids say/sign the darndest things! On Saturday, Peyton had a small incident of vomiting. I was pretty sure it was related to her not pooping as regularly as she should (her current response when I ask her to try to poop is, "no, I will poop tomorrow"). So I decided to go the suppository route. Since Travis was running errands, I knew this would be tricky - one parent to one very strong and angry child was a pretty even match. I finally got her down, got the suppository in and within a few minutes Peyton stopped sobbing and signed "potty". She got right up and within about 10 minutes had pooped twice. With tears still in her eyes and wet on her cheeks, she gave me a huge bear hug. Then she proceeded to sign to me:

"Put In"

Although I thought it was pretty funny, I also realized without knowing the context that could be seriously misinterpreted! In the past after a suppository Peyton would sign:


Again - without the full story we could be paid a visit from the local police department!

Sunday, January 23rd, 2011

So the first picture shows you two things:
1. How early I wake up on the weekend (sorry Mommy)
2. How cold the house was this morning when we got up - yep 51 degrees!
Mommy and I had the space heater in my room and stayed pretty toasty. Daddy had my two furry brothers and I think the did just fine as well. When I woke up at 6:30 this morning, though, Mommy and I got a blast of cold air when we left my bedroom. It was down right icy. Mommy sat me on my Dora couch with several blankets and set the space heater directly in front of me to help warm me up while she got some coffee going.
When Daddy got up a short while later everyone agreed it was too cold for cooking breakfast. So while Daddy, me and my brothers went back up to their bedroom with a space heater to watch some TV - Mommy went to get some fast food breakfast and thoroughly enjoyed blasting the heater on the way there and back!
Mommy called the agency mid-day to warn my nurse, Michelle, of the conditions. She called right back and said she was still up for working the night shift. She then called a few minutes later to offer the services of a friend who worked in HVAC. Mommy explained the predicament with the warranty and Michelle pointed out a concern that had occurred to both my parents first thing in the morning - the potential for the pipes freezing. Mommy decided to call the warranty company back and after a few minutes of checking, the representative verified we weren't kidding about the temperatures overnight and said they would try to get a contractor out by the end of the day. She wasn't hopeful but if they didn't make it today they would come first thing in the morning.
Not long after that call, Grandma Glenda called after reading the previous blog posting concerned that her granddaughter was a frozen popsicle. My parents assured her I was fine but they promised to head right over with another space heater. Not only did they bring a space heater, but they also brought Pandy and Coco too! I had fun chasing after four dogs as they chased each other around the house!
After they went home, I tried to take a nap but was just too wound up. Mommy had told me that we were going over to Grandma and Papa Smith's for dinner and I couldn't wait. My parents were happy to thaw out for a few hours over dinner and dessert and I got to play with Pandy and Coco.
When we got home, my parents got me in bed and without a nap I was asleep around 9:00 pm. Daddy set up one space heater with me and one downstairs for my nurse, Michelle. He also got out our queen size heated blanket for her too. Mommy and Daddy figured that with the two of them and the two dogs in a bed together they would stay plenty warm.
Peyton Nicole Smith

Saturday, January 22, 2011

Saturday, January 22nd, 2011

Can you read that? 59 degrees. When we woke up this morning it was pretty clear that something had happened to the furnace during the night. I immeadiately signed "cold" and asked for a blanket. While I snuggled under a blanket watching Caillou, Daddy checked out the furnace and discovered that it was blowing properly but wasn't lighting.

With the house still covered under a warranty, Daddy went online to notify the company that we had a problem. It wasn't considered an emergency (no water, no fire) so later in the day we got a call and an appointment was made for Monday evening. That's right - Monday evening! Guess what the high was today in Salt Lake - 43 degrees! And the low overnight will be 18 degrees since a storm is headed in.

Most people would just spend a lot of time somewhere with heat but since I am still officially under quarantine with my surgery just days away - there weren't a lot of options. Mommy tried to convince Daddy to go to a motel for a few days to wait it out but he wasn't biting so at the prospect of a long cold weekend, Mommy went to the store and got a little space heater to keep in whatever room I happen to be in so it will stay warm. Good thing for my furry brothers they don't like to be cold and they like to cuddle. On the weekends one parent sleeps with me in my room and the other sleeps in the master bedroom so tonight they will each take one dog. Mommy calls Chili because the is bigger than Henry!

Peyton Nicole Smith

Friday, January 21st, 2011

For long time readers you already know that my name sign is Princess using the "p" sign for Peyton. When Mommy bought The Princess Primer she was still 5 long months away from delivering me. But even then she suspected I was going to be a princess. I have enjoyed reading through the book for several years - mostly because it has fun things to touch - but now I am really starting to investigate what this princess thing is all about. I have sat at the kitchen counter the last two nights asking my parents over and over - what's that? A tiara. A crown. A fairy godmother (I called her an angel). A prince. A castle. A carriage. And on and on and on. I got to say this princess thing seems right up my alley - what's not to like?

Peyton Nicole Smith

Thursday, January 20, 2011

Thursday, January 20th, 2011

Meet Buddy! A week ago, Mommy, Grandma Glenda, Aunt Kristin and I met up at Primary Children's Medical Center for their pre-surgery class. Now neither me or Mommy is new to surgery but when Mommy heard that the class was directed at children as well as parents she signed up. It has become clear that as I get older I am not forgetting my hospital experiences like I used to. Since the jaw distraction will be a longer hospitalization and then weeks of pin turning at home, she had asked Child Life at Primary Children's several weeks ago if there was anything she and Daddy could do proactively to prepare me for this upcoming surgery. They suggested the pre-surgery class as a first step.

Once we all arrived we all watched a video about the hospital and surgeries. Then the parents were moved to one side of the room where a nurse went over some basic instructions and then answered questions. Meanwhile, a Child Life representative sat on the floor with me and the other kids and showed us all kinds of things we would see on the day of surgery and then we got to play with them. We also got a "hospital buddy" in it's own hospital gown to take home and bring back the day of surgery if we wanted. My hospital buddy was quickly named "Buddy" and has a special place in my bed every night.

Peyton Nicole Smith

Wednesday, January 19th, 2011

So Mommy was on the other day and a headline caught her eye - Don't Die Waiting in the ER. Since we are frequent flyers of the ER (or were before I got asthma meds) she was curious and then horrified. Can you guess why? That's right, the hospital mentioned in the article is the one I was born at (and transferred from within hours of my birth) and also the site of my first ER visit (and after 10 hours eventually transferred from again). Based on the fact that my only two visits to the hospital resulting in me being transferred from it - my parents never went back and from the sounds of it - they made a wise decision!

Don't die waiting in the ER
By Sabriya Rice, CNN Medical producer
January 13, 2011 4:45 p.m. EST
(CNN) -- When 2-year-old Malyia Jeffers developed a fever one Sunday afternoon in November, her parents gave her a children's Motrin and kept a cautious eye on her throughout the night. By the following morning, Malyia's fever had jumped to 101 degrees, and other concerning symptoms also started to appear. "I noticed bruising on her right cheek. She was really weak and could hardly walk," says her father, Ryan. He and his wife, Leah, drove Malyia to the emergency room at Methodist Hospital, five miles from their Sacramento, California, home. According to Jeffers, a triage nurse briefly examined his daughter and said Malyia most likely had a virus and a rash, and told the family to wait. They waited -- and Malyia got worse. After two hours in the ER waiting room, Malyia couldn't walk or even stand up. "I tried to stand her on her feet, but her knees buckled," her father says. Malyia's fever went from 101 to 103 degrees. Then, Jeffers says, the bruising on his daughter's cheek, once the size of a marble, covered most of her face and ears. Jeffers says he returned to the emergency room nurse, who repeated that Malyia had just a virus and a rash. "I told him, 'This isn't normal. Look at her ears,' " Jeffers recalls saying to the nurse. "'A rash isn't black and blue!' The nurse kept telling me, 'You'll be next, you'll be next.' But we saw other people going back before us." Jeffers says he carried Malyia around with him while constantly complaining to the staff while his daughter continued to grow weaker in his arms. The couple discussed switching to another hospital but thought they would be seen soon and they didn't want to lose time. They continued to wait. After what her father says was nearly five hours of waiting in the emergency department, Malyia's body went limp. For Jeffers, the wait was over. This time he bypassed the desk where the emergency room nurses sat and pushed through the doors behind them. "I asked to see someone different," Jeffers says. "I showed another nurse the bruising and said, 'Does this seem like a rash to you?' The nurse said, 'No' and put us in a room right away." Jeffers says blood tests showed Malyia's liver was failing. She was sent by ambulance to a nearby hospital with a pediatric intensive care unit, which diagnosed a strep A infection. Also called the "flesh eating bacteria," strep A had sent Malyia into toxic shock. Malyia was transferred once again, this time to Lucile Packard Children's Hospital at Stanford University. By this time, the prognosis was more grim. "It was hour to hour, sometimes minute to minute. We had a roller-coaster ride trying to keep her alive," says Jeffers, who for two weeks thought his daughter might not pull through.
"She deteriorated quickly in front of us," says Dr. Deborah Franzon, the pediatrician who treated Malyia when she arrived at Stanford. "She needed life support and blood pressure medications to help her heart functioning." While the doctors managed to save Malyia, not enough oxygen was getting to her limbs. Because of that, Franzon said, three weeks after she arrived at Stanford, surgeons had to amputate her left hand and some of the fingers on right hand. They also had to remove her legs below the knees. Methodist Hospital said it could not legally comment on the Jeffers' case. "At Methodist Hospital, patient care and safety is always our top priority" said communications manager Bryan Gardner. "Patient privacy laws do not allow us to discuss specifics of this case. We were sorry to hear about the eventual outcome for this little girl and our thoughts and prayers are with her and her family."

Tuesday, January 18, 2011

Tuesday, January 18th, 2011

Jennifer and Elizabeth had a great question for me:

If she can breathe w/o the trach for extended periods of time, why does she still have it?

There are two big reasons I still have a trach.

The first reason is that I have a lot of surgeries in my future and with a smaller than normal airway to begin with, having a trach in place is an anesthesiologists dream. My surgery coming up on 1/31 to distract my jaw should hopefully increase my airway but it will always be smaller than what the doctor's would like. The fact that even with my small airway I am able to tolerate wearing a cap for hours at a time is a good sign though.

The second reason is that my airway stability is unknown when sleeping. When I was born, if the doctor's turned me on my tummy then I didn't have to work so hard to breathe since my tongue was not falling back and covering my airway. Since I have never had an official sleep study, it's unknown if while sleeping the same thing will continue to happen. If so, then it's possible I may never get the trach out since I wouldn't be safe to breathe without it while asleep even though I would be fine while I was awake. That leads us to my jaw distraction. The best case scenario is that after the surgery they have me in for a sleep study and I can prove that I can sleep safely with my trach capped. Mommy did a short test of her own with my cap a few months back and in the few minutes I wore the cap my saturations dropped initially by a few points but quickly came back up. That's good news - but I'd have to be able to sleep safely all night capped - not just a few minutes.

So the next year will hopefully give us the answer to this question - can the trach come out? If the answer is yes then the next question my parent will be faced with is do they want it out or do they want to get through a few more surgeries first with the trach still in place.

I can already tell 2011 is going to be an interesting year!

Peyton Nicole Smith

Thursday, January 13, 2011

Thursday, January 13th, 2011

A note from Mommy:

Over the years I have watched a number of blogs that I follow go "private". Most times it is because the bloggers have things they want to say but don't feel they can. Since most people start their blogs so they can speak freely about their thoughts and feelings, it is usually only after much deliberation (and unfortunate comments from others) that they choose to go private.

I started the blog to provide family and friends with information about Peyton and her life. As it progressed it then became a way for me to record Peyton's life so she could read about it later. If other people have gained information, knowledge or comfort from it over the years then it has been just an added bonus as far as I am concerned. There have been several times I have considered going private to prevent one person from reading the blog but decided against it. By keeping the blog public there is always the voice in my head preventing me from writing things that are too controversial or might hurt someone's feelings. Maybe because of that I haven't had issues with people being angry or offended about something I have written (if they have been they haven't told me). So I'll keep my rants to a minimum and stay public as long as it makes sense to do so.

Wednesday, January 12th, 2011

The count down begins... 1/31/11 is the date of my next jaw distraction. Since my last two jaw distractions (Spring of 2010 and Fall of 2009) were cancelled due to upper respiratory infections, my parents are attempting to prevent a third cancellation. Today was my last day of preschool until after the surgery. Today was also my last official therapy/doctor's appointment until after the surgery.
Mommy and Daddy met Grandma Glenda and I at preschool today for my IEP meeting. After hearing how all of my test scores are at age level or above Mommy wasn't surprised when the topic of an appropriate placement for me came up. As my parents learned this summer, the only area where I am having difficulty is articulation. Since the school feels that most of my articulation issues are related to the structure of my mouth and not my hearing loss - I no longer qualify for the Utah Schools for the Deaf and Blind preschool program since hearing loss is not the issue. A representative from Canyons School District (my home school district) was there and the suggestion was to let me finish out the school year at Upland but next fall to begin at Quail Hollow - the Canyons preschool program. There are definately pros and cons to the change. I will be in a "normal" preschool program with typically developing peers without any type of hearing loss. In the long run, the goal was always to mainstream me but my parents weren't quite prepared that it would happen so soon. Obviously, my articulation is not where anyone wants it to be, so I would continue to get speech therapy at Quail Hollow and PT and OT consults if needed for any physical issues related to my upper extremities and balance issues.
The hope was that after the surgery when I was feeling up to it that I would go back to preschool with the hardware still on for several months. Not surprisingly, the school is a little concerned about liability should I fall and knock out the hardware with my history of falling. Apparently the other child in another program who returned with the hardware was wheelchair bound and not a falling risk. So when we left today it was with a lot still up in the air about when I may be returning.
After the placement bombshell, I had my speech therapy appointment with Courtney. We spent some time using the Dynavox communication system. It is definately an "old school" communication device but it does give me some practice using something to be my voice when my speech is difficult for others to understand. After the surgery, my parents will probably look into having an augmentative communication evaluation done. Although my parents don't want it to be a crutch and prevent me from trying to be verbal they also want me to have another option for communication.
With surgery just a few weeks away, my Mommy has been tucking things away for me to take to the hospital to keep me entertained. Hopefully, I will only be inpatient for 3-4 days but from past experience the more I have to do the easier it is for everyone. There were quite a few Christmas gifts that I have yet to play with because Mommy put them in my "hospital bag" immeadiately so they will still be new to me. Mommy is also putting a few things in the bag for her and Daddy as well - tissues, snacks and coffee.
For the next few weeks I will be sticking close to home and away from pretty much everyone except my parents and my Grandma Glenda. So don't be offended if I don't see you for a while - my parents are hoping the third time really is the charm!
Peyton Nicole Smith

Monday, January 10th, 2011

OK you have to ignore my messy face but in case you have ever wondered what my trach stoma looks like I had my parents snap a few pictures so you could see it. Now during trach changes I usually am singing or talking constantly. It definately makes trach changes a lot less stressful knowing that I can breathe without it in for an extended period of time.

Peyton Nicole Smith

Sunday, January 9th, 2011

What do you get when you mix a 2 year old, a 3 year old and an airport? You guessed it - complete chaos. Thursday morning Mommy, me, Aunt Kristin and Jackson got on a plane in Salt Lake to head to Portland, Oregon. This trip was a long time coming. Although Great Grandpa Gil has visited several times and Great Grandma Joyce had come to Sacramento for a visit - I still had never met Great Grandpa Larry!
On the flight out, Jackson and Aunt Kristin sat in the row in front of us but he wasn't much fun because he fell asleep before we ever left the ground. Luckily, it is a short flight but then we had to gather all our luggage (5 carry on's and 5 suitcases between the four of us) and get the rental car. After finally wrangling the two of us and all the luggage to the car, Mommy and Aunt Kristin were more than a little frustrated when they realized the car seats they had rented weren't already in the car. After lots of swearing, Mommy got them installed (incorrectly she's sure) and off we went. We didn't get far before the car sounded awful and started to smoke and smell. Aunt Kristin pulled off the freeway and Mommy pulled out the manual and discovered that the Altima was in the manual mode vs. the automatic mode. Once that little problem was resolved off we went to the hotel in Vancouver.
Over the next few days we divided our time between visiting great grandparents on both sides of the Columbia and time in the hotel to unwind. We both slept well and had lots of fun playing with each other.
When it came time to head home on Sunday morning, we got to the airport a little early. Initially sitting and watching the planes come in and out was interesting but as time went by Mommy and Aunt Kristin were doing their best to keep us from tearing down the place. When it was finally time to board, I discovered Jackson wasn't sitting anywhere near me and I was more than a little disappointed. Once again, though, he managed to fall asleep almost immeadiately so Mommy had to keep me entertained. Luckily, it is a short flight and I got to watch cartoons on the tv on the back of the headrest.
We had a great time although it was much too short a trip. Hopefully we can head back again soon.
Peyton Nicole Smith

Wednesday, January 12, 2011

Monday, January 3rd, 2011

To start off the new year, I went back to Shriner's so they could check on my hand. It was strangely quiet and I got right into a room. The doctor asked to look at my hand and had me demonstrate how I was using it. She seemed pretty pleased and didn't even send me for an xray - I love this woman! She told Mommy that most surgeries involving a digit are a one shot deal but when it comes to thumbs they are a little more tricky. For the moment they don't want to see me again for another year but this may not have been my final surgery depending on how my hand grows and develops. On my way out I got to pick out a stuffed animal (seriously, does a doctor's appointment get any better than this?) and then I was on my way.

Peyton Nicole Smith

Monday, January 3, 2011

Sunday, January 2nd, 2011

After much anticipation, I was well enough this weekend to go to the Unified Fire Department in Salt Lake for my own personal tour. My night nurse, Michelle is dating Tom at Unified Fire. Because they knew how much I loved firefighters, they arranged to have me come by for a visit. Last weekend I wasn't feeling good enough to go so we held off until today when I was feeling better. To add to the fun, my three cousins (Jackson, Traiton and Gavin) came along too! When we pulled up in front of the big doors I was so excited I could barely contain myself! The doors opened to reveal two fire trucks, an ambulance and five EMT/firefighters washing their beautiful Harley Davidson's and..... I quickly decided I hated the fire station. OK, hate is probably too strong of a word. Actually, I went back and forth between being shy and crying in fear. Jackson is 9 months younger than me and he looked unimpressed the entire visit. He was more interested in his ring pop sucker than anything he was seeing. In fact, the answer to every question asked of him was "no." Do you want to go sit in the fire truck? Do you want to get on the stretcher? Do you want to put on the fireman's hat? No, no and no!!! So while I was crying or hiding and Jackson was yelling "no" at least Gavin and Traiton were having a great time! They got to climb in the fire truck, go up and down on the stretcher, get their pulse and blood pressure taken on the ambulance. Meanwhile, I stayed as far away from everyone as possible! At one point, I did agree to let Mommy sit on the stretcher (most of the time I was clinging to her leg or hiding behind her) and I would take her picture. As you can see, I'm pretty good at running the digital camera. Tom and Michelle had a special gift for me and while my other cousins talked to the other firemen, Tom took Mommy and I for a private tour of the building. I got to see where they ate, watched TV and slept. I also got to see the fireman's pole (yep they have one just like my fire station) and I met the captain and the engineer. And best of all I got a pink Unified Fire t-shirt and hoodie. Super cute!
While she had a captive audience, Mommy also took the time to get some questions answered on the things she could do to help EMT's if they ever have to pay a visit to our home. Tom had some good suggestions that Mommy will put in place right away.
Thanks to Michelle, Tom and all the other firefighters for letting us come by! (Tom even said I could come back in the summer and we could pull out the truck and put up the ladder!) Of course, as soon as I left I couldn't stop talking about my visit. Can't wait till summer!
Peyton Nicole Smith

Saturday, January 1st, 2011

With the vomiting yesterday (and sub freezing temps) I wasn't able to go sledding as Daddy had promised. But with a stable tummy (and still sub freezing temps) we got to go sledding today!
Now my parents have pulled me around on the sled a few times but this was my first official ride down a hill on the sled. After a few times I was just as content to have Daddy pull me around the parking lot and eventually I decided I might as well just pull the sled myself!
Peyton Nicole Smith

Friday, December 31st, 2010

With both my parents home from work today, we were planning to spend some time at home during the day and then heading to a friend's house to ring in the New Year. Unfortunately, the first two feedings of the day I vomited up so Mommy ran to the store to get some Pedialyte and she spent the rest of the day trying to keep food in my tummy.
With all my new Christmas gifts, though, I found lots of things to do but as you can see I spent time with my old standby - paints!
I was asleep long before midnight as were my parents!

Peyton Nicole Smith