Sunday, November 30, 2008

Saturday, November 29th, 2008

Not sure how many steps in a row make me a walker but I got to 4 or 5 steps on my own without falling so I must be pretty close! I have the "more" sign down to a science now. More milk, more water, more ice cream, more Cool Whip - it's hard to say no to a baby signing more with a big smile on her face!

Peyton Nicole Smith

Saturday, November 29, 2008

Friday, November 28th, 2008

Mommy has been doing most of her shopping online, so Black Friday came and went without any Christmas shopping in our house. Instead, I spent time terrifying my parents by continuing to try to cruise on any upright object. In the last picture you can see the concentration on my face as I contemplate trying to walk away from the chair. I stick out my tongue when I am focusing really hard just like my Daddy. Someday Mommy is going to try to get a picture with both of us doing it at the same time - it is pretty funny.
At some point during the day, I developed really bad diaper rash so Mommy gave me several doses of Tylenol to help with the pain while using lots of diaper rash ointment to try to get rid of it. It made me a little whiny but it didn't slow me down much. In the evening, my parents were doing my nightly trach and g-tube care. When Daddy went to take out the trach tie I started to pull on the trach. He laid me down on the changing table as usual and I decided to be helpful and pulled out my trach. Yes, our first official accidental decannulation! Mommy wasn't sure what to do so was running to get a new trach but Daddy just reinserted the old one. Mommy is so thankful for Daddy - he manages to remain calm in these types of situations! As for me, I didn't see what all the fuss was about anyway. They take me trach out - why can't I?

Peyton Nicole Smith

Friday, November 28, 2008

Thursday, November 27th, 2008

Happy Thanksgiving! It was nice to have my parents home with me all day today. I played quietly this morning while Mommy did some of the prep work for the traditional holiday feast. At noon, "Uncle" Jeff came over with some wine and a cheesecake and a few movies. For the next few hours we watched football while Mommy worked on the turkey. By 3 pm it was time to eat and time for my nap. While Daddy, Mommy and Uncle Jeff ate, I watched from my crib. With all the excitement it took me a long time to fall asleep but I was a very good girl - mostly just playing in my crib. While I slept, they had some yummy cheesecake from The Cheesecake Factory. When Daddy woke me up about 5:30 I got to play a little longer before it was time for Uncle Jeff to head back home. Before he left Mommy made sure to get a shot of us together for the blog. Hope everyone had a nice Thanksgiving, we certainly have much to be thankful for.
Peyton Nicole Smith

Wednesday, November 26, 2008

Wednesday, November 26th, 2008

This is what Mommy calls my frowny face - and I make sure my parents see it a lot in the course of the day. It's almost like is my normal expression and every once in a while they may get a smile or laugh out of me. Mommy doesn't think I am really that unhappy all the time, but I am definately a drama queen and this just feels more natural to me : )

Peyton Nicole Smith

Tuesday, November 25th, 2008

Mmmmmm milk. I like my formula so much that I will suck on my g-tube extension just to get some. I have even been known to pull it out of my button while it is running to get a taste!

Peyton Nicole Smith

Tuesday, November 25, 2008

Monday, November 24th, 2008

Today I had my second flu shot. This will be the only year I have to have two, going forward I will just need one a season. I was a trooper and then while we waited in the waiting room to make sure I didn't have a reaction I watched a little boy play as if nothing had happened.
My great grandpa Gil in Vancouver, Washington sends me cards every week. Mommy has tried to scan them to show you but hasn't had any luck. She reads them to me and lets me see the pictures. She is saving them for me for when I am older and wants to bind them into a little book. It might have to be a few books because there are so many!
Peyton Nicole Smith

Monday, November 24, 2008

Sunday, November 23rd, 2008

Yes, that is a Cheeto in my hand and yes I should not be eating it since we don't have the swallow study results back yet. I am not really "eating" it though, mostly just licking off the cheese which is great by the way! Sorry, Daddy was eating some and I started crying when I saw them on his plate and I couldn't have any - so Daddy caved (and yes, I am filing that information away for future use).
Today I have learned to master standing up from sitting if I have something to pull up against. I will also take 2-3 steps unassisted to something (like the fridge or couch). I haven't yet figured out the landing (or as Mommy calls it my dismount) so I take a few good steps until I run into something and that stops me. Mommy now lives in fear because one moment I am sitting quietly playing and the next moment I am standing up against the couch, the chair or some other large object. Since I am an expert at standing I now stand up in my crib as well even with the mattress lowered as much as it will go and the bar raised as high as possible. I can just barely see over the top but I am standing! Therefore bedtime is even less about sleeping and more about playing then ever. Daddy said, "Peyton lay down" last night after all my antics and I dropped to the crib and laid down. But, he didn't say how long so I immeadiately got back up and gave him a big grin. Got to be a little more specific Daddy!

Peyton Nicole Smith

Sunday, November 23, 2008

Saturday, November 22nd, 2008

Because Daddy had inventory at work today, he left early to head to work so it gave Mommy and I a lot of alone time together. I took a nice long morning nap for her and then we got to spend a lot of time working on my standing from sitting and cruising. I am getting very antsy to want to walk - it won't be long now!
When Daddy came home in the afternoon, Mommy and I both took long afternoon naps and then we got to play together in the evening as we watched Chicken Little. It was a fun movie and I got very excited whenever it would come on after a commercial.
Peyton Nicole Smith

Saturday, November 22, 2008

Friday, November 21st, 2008

I hadn't seen Karen, my OT in a few weeks because I have been sick. So when she came to visit me today she was very impressed with my progress. I am cruising much better and I am much more stable on my feet. I am also starting to bend my new thumb when holding on to things. In the action shot above, you can see me cruising between two of my toys while I watch TV. Mommy thinks it is pretty cute because I over exaggerate my stepping right now as I am learning to transfer weight from one foot to the other and lift my leg really high!
In the afternoon, Mommy was back working when Lucille came to get her. While I was napping my Mic-KEY button fell out. It had only been in about a month so Mommy checked it and sure enough the balloon had a leak. Mommy is really not sure why this keeps happening so she is going to ask my GI at the next appointment if there could be something contributing to the button failure (besides me pulling on it all the time).
Peyton Nicole Smith

Thursday, November 20, 2008

Thursday, November 20th, 2008

It was supposed to be a surprise, but last Saturday, we went to the park so we could get family photos taken. Since several people have already found out Mommy decided to let everyone know now. Trina did a great job and has posted a few on her blog as a preview for us to look at and we get to see them all in a few weeks. As a preview to you, Mommy has a few above so you can see them plus a link to Trina's blog to see the rest (we are the third family from the top right now). Now Daddy hates getting his pictures taken but these were just too cute not to pass up. Just so you know, I was in no mood to want to smile in the photos so the smiley pics are few and far between. Mommy is just happy to have our first family photos completed! She planned this several months ago and when I ended up in the hospital the week before she was scared we may not be able to get them done.
Peyton Nicole Smith

Wednesday, November 19th, 2008

So Big is my favorite book. I like books pretty well, but I will search through my piles of books to find this one so Mommy can read it to me. At the very end, the pages open and out pops a really big Elmo! Mommy is able to use quite a few signs with me while reading it which is one of the reasons she thinks I like it so much.
In the afternoon, Kiersten came by to teach me and Mommy some new signs. Mommy had a list ready of Christmas signs she wanted to learn like Santa, Christmas and gift.

Peyton Nicole Smith

Tuesday, November 18, 2008

Tuesday, November 18th, 2008

Today was my modified swallow study at UC Davis. The last swallow study I did focused more on how long food stayed in my tummy and if I had signs of reflux. The modified swallow study focuses on what happens from the time the food enters my mouth until it goes into my tummy. First we met with a speech pathologist to talk about my prior eating history (not much to this point) and any concerns my parents had about my eating to this point. Then they took me to another room and sat me on a chair and had Mommy feed me a few little bites of food with barium mixed in. I took a few bites of liquid that was pretty thin, a few bites of liquid that was a little more thick and a bite of liquid that was the consistency of a really thick pudding. By then I was done eating and just wanted to go take a nap. Although I didn't get a lot down, the radiologist thought there was enough video to get some information. Now my parents have to wait until mid-December to get back in and watch the video and get a written report from the speech pathologist about what they saw. Until then, to be safe, my parents are going to hold off doing any oral feedings.

Peyton Nicole Smith

Monday, November 17th, 2008

With my physical therapy appointment, skipping my afternoon nap and Daddy working late, Mommy didn't get a photo in of me. Each day I cough a little less and my sats creep up more steadily to normal. I'm not quite there yet but getting closer every day.

In the afternoon I had my physical therapy appointment with Michael. It had been several weeks since the last one, and he was happy to see that now I get up on my knees on my own but like to spend time there dancing and playing. He said that when most kids start "cruising" around furniture walking is usually a few months away. My parents are hoping that I am walking by Christmas so I can show off to family and friends in Salt Lake - but we'll see if I go along with the plan.

Peyton Nicole Smith

Monday, November 17, 2008

Sunday, November 16th, 2008

Happy Anniversary Mommy and Daddy! It's been two years since they were married at Churchill Manor in Napa. There lives are so much different now, mostly because of me! Some anniversary in the future they would like to get to Hawaii since they never made it for their honeymoon but for now they are content to stay close to home and spend some time together. Sarah came to play with me so they could get a little alone time. They ran a bunch of errands and had a nice late lunch together. After they got home and Sarah left we got to play with the bubbles again. I refused to go to sleep tonight and when Marianne arrived at 10 I was awake and smiling at her from my crib. I'm so cute it's hard for Mommy to get very mad at me for staying up late and wanting to watch TV!

Peyton Nicole Smith

Saturday, November 15, 2008

Saturday, November 15th, 2008

Because the weather was so great today, my parents and I spent some time at the local park enjoying the sunshine. I showed off my "water" and "duck" signs to anyone who would pay attention. I also had a great time playing (and trying to eat) the leaves. A grandfather playing with his son asked Mommy if I had a tracheostomy. Mommy was pretty impressed he knew the technical term! They talked for a few minutes and Mommy was really happy that someone felt comfortable enough to ask questions in a respectful way. While they were talking I checked out his 17 month old grandson, Elijah. What a cutie!

Peyton Nicole Smith

Friday, November 14th, 2008

It's been a slow road to recovery for me this week, but today I was able to make it an entire day without vomiting and off of my trach mist. Mommy was thrilled and Daddy was pretty happy too. I still have moments of coughing but they generally don't last as long don't result in gagging and throwing up. Slowly, my saturations are inching back up and my heart rate is coming back down. I do eventually fall asleep, but often it is after several hours of playing and watching TV as I peek over the crib!

Now that I am feeling better, I am back to thinking that night time is play time, espescially now that I can get myself up to sitting and standing in my crib.

Peyton Nicole Smith

Friday, November 14, 2008

Friday, November 14th, 2008

A note from Mommy:

We are mid-day here and so far Peyton has been off the trach mist all day and no vomiting yet either. For those of you who have traveled with us through her vomiting adventures over the last 14 months, you have probably wondered why I worry so much about it. All kids throw up right! Absolutely. It always upsets Peyton and I hate to see her upset. For three other reasons, though, it gets me all worked up.

1. If Peyton throws up then she is losing valuable calories she needs to grow. Since she is so small for her age already, any ongoing episodes of vomiting will probably result in the inability to gain weight or possibly start backsliding on her weight. (see her stomach virus that led to lactose intolerance in the spring, it took us months to get her back to where she had started from).

2. If Peyton throws up it could end up in her trach and into her lungs where if it is aspirated it could turn into pneumonia. If it turns into pneumonia, it could result in damage to her lungs. Currently, Peyton is trached (as far as we have been told) only because the of the small jaw that resulted in a compromised airway, not because of lung disease. So if we can just keep her lungs healthy and clear then we expect that decannulation is still a possibility for her in the future.

3. After a week of being vomited on every day at least once if not more - I am tired of changing her clothes and mine each time! The washing machine has been working overtime this week!

Yes, I am a little bit over the top with all of this but at least I have some valid reasons to be. So bear with me!

Thursday, November 13th, 2008

Mommy is starting to get so frustrated that I can't seem to get past the vomiting and coughing, espescially now that a week has passed since I was admitted to the hospital. Mommy is going to see how I do through the weekend and if there is no improvement try to get me in to the pediatrician. Unfortunately, she didn't have any appointments tomorrow so we'll have to wait until then.

Peyton Nicole Smith

Wednesday, November 12th, 2008

Thanks for the bubbles Aunt Kristin! In between coughing and vomiting today it gave me something to take my mind off of being sick!

Peyton Nicole Smith

Wednesday, November 12, 2008

Tuesday, November 11th, 2008

There were more ups then downs today, at least during the day. My parents are giving me steroid breathing treatments twice a day. I am also getting Benadryl every 4-6 hours. I didn't cough much today which was great, but I started doing some weird gagging without any throwing up a few times. Mommy thinks it may be a side effect of the steroids. When it was time for bed tonight, my sats had climbed a little (94-95) but I did have a big coughing fit. Mommy is remembering from my last URI that after my day coughing had improved the night coughing hung on for a while so she is trying to be patient. She is anxious to see my well!

Peyton Nicole Smith

Tuesday, November 11, 2008

Monday, November 10th, 2008

Mommy was sad to learn that although I slept a little better last night, when Marianne went to disconnect my feeding this morning, I vomited up a little of my feeding. When I woke up for Mommy a little after six, I just wanted to lay in her arms and eventually went back to sleep because I was so tired. After my 9:30 feeding, I started coughing while Mommy had come out to check on me and vomited up my entire feeding. Mommy called my pediatrician to see if there was anything else that could be done to help the coughing and increase my oxygen levels and decrease my heart rate.

Luckily, Dr Emge called back quickly and got to work. She had Mommy pick up some Benadryl for me to help with some of the symptoms - sneezing, runny nose, etc. She also called in prescriptions for a steroid to help reduce the inflammation in my airway and Xopenex to help open my airway so I could breathe easier. Dr Emge worked with a DME supplier to have a nebulizer delivered so my parents could start giving me breathing treatments with the medications. She also recommended that until I am past this URI, that I go back to continous feedings during the day so when I did cough there wasn't as much in my tummy to throw up - less mess and less likely to dehydrate so quickly.

Mommy started the continous feeds and Benadryl right away and that seemed to prevent any more vomiting and reduce the coughing. Daddy picked up the medications in the evening and Apria dropped off the nebulizer at 9 pm. I had already been asleep for about an hour but was having trouble keeping my oxygen sats above 90, so my parents went ahead and woke me up to give me my breathing treatments. First up was the steroid followed up with the Xopenex a 1/2 hour later. Within minutes of the Xopenex I was getting very smiley and then by the time Marianne showed up I was a crazy girl! I couldn't stop moving - I was all over my crib - sitting up, standing up shaking the blinds, throwing myself around. It was all very strange and kind of funny. I am going to give Marianne a run for her money tonight!

Peyton Nicole Smith

Monday, November 10, 2008

Sunday, November 9th, 2008

Despite coughing fits last night for Daddy, when Lucille stayed with me I slept through the night with very little coughing. I slept until 7 this morning and then I was ready to play. Through most of the day I did very well, rarely coughing and just a little throwing up once. But by the time it was bedtime tonight, the coughing fits started back up again. Mommy is going to call my pediatrician in the morning to see if there are other things that can be done to help me.
Peyton Nicole Smith

Sunday, November 9, 2008

Saturday, November 8th, 2008

I broke out of the PICU today! My parents came in the morning to get me hoping I would be discharged today. Unfortunately, Mommy has caught what I have so she had to wait outside a few hours until they released me. While I was with Daddy I kept signing Mommy wondering where she was. I had a little coughing fit before discharge and vomited a little of my feeding but not too much. They released me without any meds or restrictions on my activities so my parents just try to have to get me to rest and get better.
I was very excited to get home and wanted to play right away but my parents made me get into my crib to try to rest a little. I just played with my toys there instead. They are keeping me hooked up to my trach mist 100% of the time right now to try to keep my throat nice and moist so my coughing is productive and prevent me from those coughing spells. I did well all afternoon but early evening Mommy took me off my trach mist for a few minutes to get me ready for bed and a big coughing fit started back up. I ended up vomiting a little bit of my feeding and it took me quite a while to stop coughing so I could get to sleep. Daddy sent Mommy to bed so she could get better while he waited up for Lucille.
Peyton Nicole Smith

Friday, November 7, 2008

Friday, November 7th, 2008

It was a day of ups and downs for me and my parents. When my parents arrived at the hospital this morning, I was sleeping. Daddy went ahead and went on to work and Mommy stayed with me. After awhile I woke up and seemed to be in a pretty good mood. My day nurse told Mommy that she thought I would probably be discharged today. My fever had gone down but my heart rate and respiration rate was still higher then usual. For the next several hours, I played in my crib and watched some tv while we waited for the doctor's to round. They came by and said that although I was doing a little better and most of the tests had come back negative there were still some additional tests they were waiting on (RSV, flu) and they wanted to keep me overnight. Before the doctor's had moved on to another patient, I started coughing and vomited up most of my feeding. Mommy cleaned me up but I was still very upset. A few minutes later I vomited twice more - but this time on her! After that, I calmed down and dozed for a little while in my crib. After I woke up, the respiratory therapist came by to give me a breathing treatment. Because I was so junky, he suctioned really deeply. It helped clear my trachea but it was already very irritated and I started coughing up some blood through my trach. Eventually, I fell back to sleep. At this point Mommy was starting to smell pretty bad so she had Daddy come pick her up so they could get something to eat and she could go change.

While they were gone, the RT came back and did chest percussions to help me cough up what was left in my lungs. This got me all wound up again so after he left I fell back asleep again. When my parents got back in the late afternoon I was still asleep. The nurse told my parents that my flu and RSV tests had come back negative so at this point it is probably something viral. I tolerated my 2:00 and 5:00 feedings without any problems but around 7 pm I had another coughing fit that would lead to gagging. Luckily, I was able to keep my feeding down. Despite the coughing, I was in a good mood and spent time playing in my crib and sitting on my parents lap watching Elmo's World. I even played with the doctor's kit Mommy got me in the gift shop - I really liked pretending to give shots! When the night nurse came in she told Mommy that I had a really tough night last night (not what the day nurse had relayed to Mommy!) because I kept coughing but she hopes I do better tonight. My parents left about 8 pm so they could get something to eat. I was wide awake and when they walked away they could see me peeking through the bars trying to see where they were going. I wasn't upset - just curious. They came back from dinner to find me sleeping again, and gave me kisses before leaving for the night to hopefully get some sleep. Poor Mommy seems to have caught a cold and she's hoping Daddy doesn't catch it too - it would be really bad if all of us were sick at the same time!

Mommy had a very special experience today. In the afternoon Eugene came by. He had come by earlier in the day too. He was responsible for taking out the trash and sweeping up the floor. One of the nurses was talking with Mommy about trying to find a more comfortable chair for her later when she had some time. A few minutes later, Eugene came back pushing a reclining chair. Apparently, he had overheard the discussion and took it upon himself to find a chair and bring it to Mommy so she could be more comfortable. Eugene is probably in his 60's and shouldn't be pushing anything around that heavy but he wanted to do what he could to make Mommy's experience in the PICU more bearable. Mommy gets a little teary just thinking about it. It reminded her that it can be something very small that can make someone's day. In our day to day lives we have the ability to do things for others that may seem very insignificant but are very meaningful. When life calms down, Mommy is going to contact UC Davis to let them know what a great employee Eugene is. Thanks Eugene!

Peyton Nicole Smith

Thursday, November 6th, 2008

Man I had a rough night last night! After my coughing spell with Daddy, I had another 1 1/2 hour coughing spell with Marianne. When Mommy came out this morning, I woke up and then coughed off and on for the next several hours until Lucille arrived. She called the pediatrician on call to ask if I could be having a reaction to the Synagis but he didn't think so. He told Mommy that if I started having difficulty breathing, wheezing or other symptoms to bring me in.

After a dose of Tylenol I perked up a little and then took a nap. The nap didn't seem to help much, though, because the next 3 hours Lucille rocked me while I cried. Nothing seemed to help. About 1, Mommy came to check on me and was concerned about how I was breathing. She called Karen, my case manager at her work, who thought over the phone it sounded like wheezing which could indicate my airway was getting swollen. She suggested Mommy hook me up to the pulse ox to see how much oxygen I was getting and then call the pediatrician. Mommy was shocked to see my heart rate was much higher than normal and I was only satting between 89-92 when usually I am between 97-100. Mommy called my pediatrician right away and got right through. While Mommy was on the phone describing what was going on, my pediatrician also thought I sounded like I was wheezing. She was planning on having Mommy bring me in for a nebulizer treatment but suddenly I coughed so hard I vomited up my entire feeding on Mommy. At that point, the pediatrician told Mommy to head to the ER.

Daddy came home so we could go the ER and I was able to sleep a little in the car until we got to UC Davis. They got us into a room pretty quickly and hooked me up to a pulse ox and my sats continued dropping and my respirations were much higher then they should be because I was working so hard to breathe. I was also running a pretty high fever (103) and my secretions were starting to turn from clear and white to green - a pretty good sign something was brewing. They had my parents take me to get a chest xray and while they waited for the results, hooked me up to a ventilator to give me some help so I didn't have to breathe so hard. They also took some blood, gave me two nebulizer treatments, put in an IV, got a urine sample and started me on IV fluids. The chest xray looked pretty clear so they are thinking it is not pneumonia. After 8 hours in the ER, I wasn't improving much so they moved me to a bed in the PICU where I will stay at least overnight. They are doing some tests to see if I have the flu, RSV, bronchitis or some other viral infection. By the time my parents were leaving for the night, the doses of Motrin and morphine had kicked in and I was starting to play some in the crib. In fact, I was showing off to the nurses my signs and how I can sit up in the crib and pull myself up using the bars. Mommy picked out some toys to play with and they got a mobile going to help me try to sleep. My parents never like leaving me alone in the hospital but they trust that UC Davis has great staff to care for me.

On the way home, they had just gotten on the freeway and came upon an accident that had just happened. Several cars were demolished and one was even on it's side. The first people on the scene had at least one person on the ground waiting for emergency medical personnel. It looked very serious. It reminded my parents of how lucky they are.

Peyton Nicole Smith

Wednesday,November 5th, 2008

Two appointments again today. Early this morning it was time for my synagis shot to protect me against RSV - the first of the season. I cried while getting the shot but as soon as Mommy picked me back up I was fine.

I came home for a good long nap and tolerated my feedings being reduced to 15 minutes. Before I had much time to play it was time for my audiology appointment. Just like before, they had me sit on Mommy's lap in a sound booth and measured what I could ear. Without my hearing aids, I was in the 80-90 decibel range (vacuum cleaners, dogs barking, etc). Today with my hearing aids I consistently heard about 20 decibels in tones and speaking which is in the normal range! The audiologist was very pleased with the results. She wants to see me back again in six months for another test.

After such a long day I should have gone down easily tonight but about 9 I started coughing uncontrollably for over an hour. My parents aren't quite sure what is going on but hope I feel better soon.

Peyton Nicole Smith

Wednesday, November 5, 2008

Tuesday, November 4th, 2008

I love the phone! I get very excited when I hear Mommy or Daddy on the speaker phone so I have learned how to hit the speaker button on my own. I also like to push the numbers - and unfortunately for my parents I like the number 9 - now they just have to teach me not to use the number 1!
I made it down to 20 minute bolus feeds today with no issues!

Peyton Nicole Smith