Thursday, December 30th, 2010

The mystery of vomiting. My parents, my nurses, my doctors and even my grandparents have spent countless hours analyzing why I vomit. Sometimes the answer is simple - violent coughing, stomach virus, constipation, volume. Many times nobody really knows why. Each of the last three days I have vomited once. Tuesday it was after my 3 pm feeding. Just stopped all of a sudden and vomited. Wednesday while sleeping and getting my 3 pm feeding I suddenly woke up and vomited. Today the vomiting was during my first feeding of the day. Violent coughing - nope. Stomach virus - possibly but since it is only one feeding a day probably not likely. Constipation - possibly but I have had numerous stools each of the three days so things seem to be moving. My parents did just bump me up 90 cc's a day to try to get extra weight on me ahead of surgery but that didn't happen until Wednesday and it is only a few cc's extra per feeding so it doesn't explain the vomiting Tuesday before the extra volume was added. There is also that small issue of my button placement. Several GI's later they are all unsure of why it was placed there to begin with and aren't sure what the pros or cons are of having it there. We have certainly figured out one con (button sucking in issues) but there is no guarantee if it got moved that that particular problem would be solved. Even if it was, there is the potential we would have other issues with the new placement. Many kids with a g tube also have the Nissen fundoplication procedure to prevent excessive vomiting and GERD. Luckily, my vomiting has never been serious enough to warrant the procedure but if my g tube placement is changed all bets are off. It certainly seems like there are a lot of kids with g tubes that have issues with vomiting but Mommy hasn't ever heard any strong indication that the g tube itself is contributing.

Within moments of vomiting I am usually off playing again so it is unlikely that I am sick but it is curious and very frustrating. Curious because Mommy doesn't like not knowing why something is happening with me and frustrating because those are precious calories that I really need to grow. Unlike most of America my fight is to keep weight on - not try and get it off! So my New Year's resolution is to gain weight folks!

Peyton Nicole Smith

Wednesday, December 29th, 2010

Mommy wasn't quite so sure that I really was into my fire set as much as she thought I would be. But over the last few days I have been playing with it. In fact, I prefer to play with it while wearing my fire hat from Unified Fire. Tonight I grabbed Mommy's hand and led her to it so she could play with me. When it was time to go downstairs to make dinner we turned off the light and headed out the door. We hadn't made it far when I insisted we go back to my bedroom. Then I put both of the firefighters to sleep on the bunk bed and headed down stairs. They needed some sleep!

Peyton Nicole Smith

Monday, December 27th, 2010

A note from Mommy:

In the last month there have been several times where the topic of another child has come up with someone. Travis and I have had this discussion many times and each time we come to the same conclusion - it's unlikely we will have another child. Until genetic testing is completed on Nager Syndrome, worst case scenario is that we have a 25% chance of having another child with the syndrome. Best case is that it was a genetic mutation and it will never happen again. As much as we would like to believe in the best case scenario, it is more likely that we fall into the worst case scenario. Miller Syndrome is very similar to Nager Syndrome and last year around this time they determined it was a recessive gene. Peyton's blood sample is one of several of children with Nager they are currently testing and we are expecting to hear at any moment that Nager will also be considered recessive.

On the Nager spectrum we have been told that Peyton is "moderate". Many children who are severe do not survive pregnancy or die shortly after birth due to airway issues. Neither Travis or I can even contemplate losing a baby.

If we were to have a "normal" baby the reality is that Peyton will always take more time and energy. We don't feel it is fair to either her or the other child to put them in that position.

There are other considerations as well, though. I have pretty good insurance through my employer but it has a lifetime maximum of $2 million. Peyton is 3 years old and has already met $1 million. Almost 1/2 of that was just from her time in the NICU but with all of the surgeries in her future she is going to meet that lifetime maximum with my insurance before long. In the end, she will be uninsurable for commercial plans and we will rely soley on Medicaid for her medical care.

When explaining our reasons to not have another child we have been called "responsible" or "good parents". So do I consider people who have a known risk of having a child with disabilities who get pregnant - irresponsible or bad parents? Peyton will be faced with the decision as an adult if she will have children of her own - her risk will be 50/50. Would I deny her that choice because should she have a child with Nager as well that would be a financial drain on the health care industry, school district and herself? How much money, time and resources are too much to spend on a child - or anyone for that matter?

We have discussed adopting - possibly a child with special needs. We have also considered adopting a child with Nager but with the syndrome being so rare it is unlikely that opportunity will ever present itself. Our truth is that we have had to make a decision that we could live with. Hopefully at some point Peyton will read all of these blog entries since I print them into a book every six months. When she does I want her to know that the decision we have made is no reflection on our love for her. She is worth every tear, every cent, every moment that we devote to her.

Sunday, December 26th, 2010

It took me until almost 2 am to fall asleep and I had a very restless night. Since Mommy was so tired and fighting a cold of her own, Daddy stayed up with me tonight. Aroun 7 am, Mommy heard the feeding pump go off and when it became clear Daddy wasn't going to wake up, she went in and turned it off and then sent him to bed. Within a few minutes I popped up in bed and initially seemed perky but then I started coughing and vomited. Mommy is getting pretty good at this and managed to catch most of it in a blanket to avoid getting it on herself.

We headed downstairs and Mommy started up the Pedialyte (see told you we should own stock) and I got my next dose of Tylenol and we proceeded to open every toy I had gotten over the last several days. When Daddy woke up about three hours later I had pretty much made it through everything once and was starting onto some toys a second time.

I played at home today to try to kick this cold and took a nap in the afternoon. Mommy had to wake me up to take me to Grandma and Papa's house so she and Daddy could go to dinner before Grandpa Gil heads back to Portland tomorrow. (That's him trying to catch some shrimp at the Japanese steak house).

I sure didn't act sick while they were gone and was hopping around the house when they returned. When we got home I had some quality bonding time with my new Dora chair/couch while watching some episodes of Dora on TV.

Tonight I took a bath and got to try out all my new bath stuff - alphabet soaps (I picked letter "p" of course), fizzies in the shape of a snowman, and Yo Gabba Gabba tub-stick ums. Mommy is hoping that for Michelle's sake that I have a more restful sleep tonight.

Peyton Nicole Smith

Saturday, December 25th, 2010

After the late night tantrum, it wasn't a big surprise that I was not the first one up Christmas morning. In fact, Daddy had to wake me up. Initially I wasn't so thrilled about that and kept giving him the elbow but when he whispered in my ear that Santa had come and brought me a surprise I gave a big smile and hopped out of bed. I was still a little sleepy on my feet as I stumbled into the living room and saw my fire set just like I had asked for. I didn't have much time to play with it, though, before I needed to start opening up all of my other gifts. After all the excitement, we had a nice breakfast together and then we headed home to shower and make our way to Karen's.

While Karen and my parents had some nice hot soup, I played with my favorite Hallmark Christmas toy (this is a perennial favorite). Then we settled in for the next round of gift opening. I was super excited for the horse and stable set (although I insist that it is a farm not a barn) and couldn't wait to get the horsies out to play. After some dessert it was back in the car to head back to Grandma and Papa Smith's for a yummy prime rib dinner (okay I didn't have any of the prime rib but I heard it was great). My parents didn't even make it to dessert before Grandma Smith told Daddy to get me and Mommy home. Mommy was about ready to fall asleep sitting up and I was starting to run a temperature again. While Mommy headed off to bed, I hung out with Daddy on the couch playing with my horsies. My temperature was climbing so Daddy knew he was in for a rough night. Despite being sick I had a wonderful Christmas holiday. Merry Christmas everyone!

Peyton Nicole Smith

Friday, December 24th, 2010

Despite the high fever, with a lot of Tylenol and Pedialyte through the night I slept like a log. But I was still definately in the throes of an upper respiratory infection so I stayed home and rested during the day intead of making cookies with Grandma Marilyn like Jackson, Traiton and Gavin got to.

Mommy, Aunt Kristin and Uncle Jason went to the nursing home to visit Grandpa Mike and I stayed home with Daddy. He tried to get me to rest as much as possible but that is easier said than done.

Early afternoon Mommy put me down for a nap and when I woke up I was feeling perky enough to head to Aunt Kristin's for Christmas Eve dinner with Mommy's side of the family. Aunt Kristin had saved some cookies for me to decorate for Santa. We had a good meal and time to play with the cousins before opening presents in the evening. I got lots of fun things but my favorites were the two horsies and my Dora chair/bed. Actually, cousin Jackson liked my Dora chair as well and showed me how to leap off the couch on to it.

As we started to get close to my bed time, we went to pick up my furry brothers and head to Grandma and Papa Smith's for the night. Everyone was there and it was just too hard to settle down. I put out the reindeer dust on the lawn, set out the keys (they don't have a fireplace) and my cookies and milk for Santa. Eventually, my parents wrangled me into the spare bedroom but I was too wound up to sleep and threw a tantrum (yes folks I ain't ashamed to admit there was lots of kicking and crying involved) for close to an hour before I finally fell asleep. There were no visions of sugarplums in my head but a fireset this year!

Peyton Nicole Smith

Thursday, December 23rd, 2010

That's right friends - I will be sick for Christmas once again this year! After a runny nose and sneezing late last week and then dry coughing fits every night for the last few nights the cold that was hanging around finally got the better of me and hit full force. This morning when I woke up I vomited. Daddy figured it was because I hadn't gone poopy like I should the day before and sure enough I pooped shortly after. During the day I seemed fine and then Daddy and I met his brother, sister, two nephews and mother at the Natural History Museum. I was having a great time but as we got ready to leave I threw up in his car. I ended up sleeping all the way home and once I got there when he got me in the house it was clear that I had a high fever. Upper respiratory infection here I come!! Daddy started up the Tylenol and Pedialyte (seriously we should own stock in these companies) and then the rest of the night my parents kept them coming. When my night nurse Michelle arrived at 10 pm I had just fallen asleep. My heart rate was in the 140's and my fever was 103.8. After my next dose of Tylenol and about 20 minutes I had dropped down the 120's and a fever of 101.3. Michelle kept the Pedialyte flowing and the Tylenol doses pushed through the night and I ended up sleeping great. But I am definately fighting a cold and with it being the trigger for my asthma, my parents are keeping a close watch to try to keep me out of the PICU at Christmas. Cross fingers!

Peyton Nicole Smith