Monday, June 20, 2011
What I thought was going to be a day being lazy around the house turned into lots of fun. First Daddy had to unload a truck at work. Mommy and I invited ourselves along. We packed my bike and while Daddy used the forklift to take pallets of wood off the semi, Mommy escorted me around the warehouse on my bike. Daddy even let me take a short ride on the forklift with him when we opened the gate for the driver of the semi truck.
I was a little distressed at having to leave so Mommy suggested we head to Gateway to view the Chalk Art Festival. It was already getting warm but we had a nice time strolling along checking out the works of art in progress. My favorites were the ones with Disney characters! When we reached the end of the art we had made it to the fountain. Although there were a few kids running through the water it was a little too overwhelming for me and I decided just to watch.
My shoulders were starting to turn pink from the sun so my parents headed to the Discovery Gateway which is an interactive children's museum. I had lots of fun playing in the water, shopping in the Peyton-sized grocery store and getting on the horse. I told my parents that the next time we would have to bring my cousin, Jackson with me because he would love it too.
Peyton Nicole Smith
Saturday, June 18, 2011
Peyton Nicole Smith
Peyton Nicole Smith
Tuesday, June 14, 2011
Monday, June 13, 2011
There were dinosaurs on display at the zoo and Jackson is currently a dinosaur fanatic. But because they were moving and roaring he was more scared than excited to see them. If he thought that was scary he was in for an unpleasant surprise when the elephant statue suddenly sprayed water at the precise moment he put his face in front of it! It's a pretty forcefull spray and probably stung a little but definately scared him! I caught a little too but I was more upset that Jackson was crying and started crying myself! A whirl around the carousel and we were in a better mood but hungry and tired. After a few snacks it was time to go.
Peyton Nicole Smith
Saturday, June 11, 2011
Peyton Nicole Smith
I'm not even sure where to begin after today's surgery consult about the placement of Peyton's gtube. OK actually I do know where to begin - for every other time the option of surgery was put before us we didn't really hesitate. This time around we don't have a clear direction and that is not something we are accustomed to.
For those who haven't followed her blog from the early days, Peyton's gtube was placed when she was three weeks old. Although we didn't know it at the time, the placement of the gtube was unusual as compared to most other children. When she was about 2 1/2 months old the switched out the gtube and put in the Mic-KEY button. Most of the time when I blog I still call it a gtube but it is actually the button. At the time that the Mic-Key was placed, Peyton had some granulation tissue growing around the stoma which is pretty common. At the time they measured her for the button they measured a little bigger to accomodate the tissue. A few months later Peyton was admitted for a pyloric blockage. The stem of the Mic-KEY button was too long and had migrated into her pyloris causing an obstruction. She went from a button that was like 2.3 to where she is now which is 1.5. We briefly tried out a 1.7 last fall but are now back to the 1.5. So in four years we have yet to truly upsize from the placement she had when she was a few months old and she is now almost four so that tells you the button they first put in was WAY TOO LONG!
When Peyton first came home she was on breast milk but when she was transitioned to formula she began to have more and more incidents of vomiting. At the time it was attributed to reflux which is common in non trached/non gtubed babies let alone kids with extra holes! There was no testing done, but she got started on reflux meds but even that did not seem to help much. At around 7 months old, she developed a short lived stomach virus that resulted in a long lived "lactose intolerance". Her GI at the time moved her to a soy formula and the vomiting virtually went away completely. In May of 2010 while hospitalized for an URI, they did a blood test and determined her "lactose intolerance" is actually a severe milk allergy which was probably the cause of all the vomiting all along.
After moving to the soy formula we spent the next year moving her off of continuous feeds to 5 bolus feeds during the day and eventually we even got her off of night feeds all together. We also did away with the reflux meds. In the summer of 2009 her night nurse started to notice that she would wake up in the middle of the night in pain clutching her stomach. This led to the infamous showdown in which the nurse said we were starving Peyton. Eventually, I witnessed the button "sucking" in after she woke up one morning before I could start her first feeding of the day. We contacted Peyton's GI but she had never heard of anything like it before. As the months passed, we noticed that as soon as we would put a little milk through the button when it was sucking in it would release. I did some research online and came across a few adults on some gtube forums who had experienced the same thing and they had also determined that starting a feeding was the only way to short circuit it. Although certainly not experts in anatomy Travis and I came to the conclusion that when Peyton's stomach was empty too long, the muscles of the stomach would start contracting and pull on the stem of the tube.
In late summer of 2010, we got into the dysphagia clinic at Primary Children's. We had just started back up with night nursing and had instructed the nurses that when Peyton would wake up in pain clutching her stomach to run a little water through the tube. Unfortunately, they were having to do it multiple times a night and it resulted in a lot of interruped sleep for Peyton. When Dr O'Gorman saw Peyton in clinic that day it just so happened that the button sucked in while we were sitting there. She was honest that she had never seen anything like it. With Peyton's jaw distraction looming on the horizon she didn't want to do anything at the moment except to get an upper GI study to look at the anatomy and determine if there was anything concerning about the placement in the meantime. When those results came back that yes it was not normally where a tube was placed but it didn't look to be causing any harm we agreed that we would keep things as they were until after the jaw distraction.
Post distraction we started seeing Peyton's speech therapist again. With Peyton now able to open her mouth and Courtney able to see in she mentioned that she saw some "cobbling" which could be indicative of reflux. Since we had dysphagia clinic coming back up, she recommended that we talk with Dr O'Gorman about it just to be safe.
With the distraction behind us, Dr O'Gorman felt that it was best to plan on moving the tube and during the surgery if the scope showed signs of reflux to plan on the Nissen procedure at the same time. And so that is how we got to Dr Downey's appointment today.
First off, Dr Downey had us go through the long history I just gave you above. He verified that Peyton doesn't have formula showing up in her mouth during or after tube feedings and that she doesn't have coughing fits (beyond what would be expected with a trach).
Dr Downey started off by saying that the reason for Peyton's unusual placement was probably not anything related to her specific anatomy (this would make sense since her first GI knew what surgeon had done Peyton's surgery based on where it was) but he would double check her upper GI that had been done last fall. He indicated that another surgeon had decided to do a different placement because he thought it would result in less reflux (more on that in a minute) but nothing had ever been proven to show that it did. However, there were other surgeons that got on board and started to put their tubes there as well - although they were far in the minority. I quizzed him as to why the sucking in problem wasn't happening all the time but I pretty much answered my own question when I realized that for the first few years she was getting night feedings and the first year she was getting continuous feedings during the day as well - her tummy was just never empty long enough for it to happen.
Then Dr Downey did a short explanation of the anatomy with us. In the first illustration you can see a normal tube placement. It is left of the midline and below the esophagus. Peyton's placement is on the opposite side (on the illustration next to the belly button). As you can see based on where that is it is very close to the pyloris and duodenum. In fact, Dr Downey said based on the length of the stem of Peyton's first button when she had the blockage we were very lucky it didn't blow out her duodenum!
Dr Downey also can't guarantee that moving it to the left side will prevent the sucking in problem but he is also highly suspicious that it would since he has also never seen or heard of the sucking in problem either. So that brought us to discussion of the Nissen procedure. The second illustration shows what happens during the Nissen fundoplication procedure - essentially the fundos (upper part of the stomach) is wrapped around the lower end of the esophagus and stitched in place. It prevents refluxing but it can also prevent vomiting. Now remember, Dr O'Gorman had said if there were signs of reflux that it would probably be a good idea to get the Nissen done. However, I have heard so many negative things about the Nissen that I wasn't on board. First off, Dr Downey doubts Peyton has reflux. And there is no chance he would do the Nissen without first having several tests that show severe reflux. As he explained once you do the Nissen there is no going back so it should only be used when everything else has been tried. So before he would consider it he wants a EGD, probe test and biopsies of the stomach. Although he is very cautious in doing the Nissen procedure he knows that not all his collegues have the same protocols and there are many children who have had the Nissen done without any diagnostic measurement to indicate reflux at all - let alone severe reflux. Some surgeons just standardly do the Nissen with the gtube.
Then came the second part of the reflux discussion. I have heard many parents say that after their child got a tube, they either started having reflux or previous reflux got more severe. Dr Downey again pointed to the anatomy. The normal tube placement is just below the fundus. Because of the weight of the tube it can somewhat change the shape of the stomach and it is possible that it results in reflux. This is just a theory and one that he does not put any stock in. He did say, though, that another doctor in the practice completely disagrees with him and does think there is a correlation between tubes and reflux.
Should Peyton have severe reflux and need a Nissen there would be no ability to have it done with her tube where it is now. They would have to close off the current tube, move it to the new location and do the Nissen at that time. It would be a 3-5 day inpatient stay. Should Peyton not have reflux and we choose to move the tube to try to correct the sucking in problem it would most likely be an overnight stay - although that is only because we are not tube newbies.
So the first step is to have the EGD, biopsies and probe test done. They can all be completed at the same time and my parents are hoping to have the ENT's throw in a bronchoscopy at the same time to look at her airway. Dr Downey is going to get back with Dr O'Gorman to start that process.
Meanwhile we have more questions than answers. When I went into this appointment it was with the thought of getting the tube moved so we could get rid of the night feedings. Travis didn't think it was worth another surgery. At the end of the appointment I am in agreement with him. If she has severe reflux then moving the tube is required to do the Nissen and we'll have to consider going down that road. But if the tests don't show reflux (and we are pretty sure they won't) we probably won't go any further. Although Peyton has to have night feedings, she is finally putting on weight, hardly ever vomits and is interested in eating orally. We don't want to jepordize any of that by moving the tube and potentially ending up with reflux - it's just not worth it.
Tuesday, June 7, 2011
So two things, my parents (and Chili) were very nice to sit still for me while I took countless photos of them. I was sitting on the changing table (yes, not very safe) and as Mommy has taught me in the past asked them to say "cheese" over and over again. Not a great photo with my foot in it but you do get a good idea of the size of the big, big bear in relation to everything else in my room!
So the other thing is the new trach change video. My parents are prepared for numerous comments wondering why the hell they would allow a 3 year old to take out her own trach (actually I am closer to 4 but who's counting). Actually, they have been letting me take my own trach out during trach changes for several months now. Although I need a little help getting it back in, taking it out is no big deal! OK so here is my parents philosophy on this - bear with me. This trach thing is probably pretty long term for me so the sooner I get involved in my own care the better. Obviously I am a pretty smart cookie so they weren't surprised when I wanted to participate in this weekly event. In addition, they figure if I get to take it out once a week with their permission I will probably be a lot less interested in taking it out on my own to try to irritate or scare them. Now if I was not stable without a trach in for a few minutes at a time my parents would never have gone down this path but as it is they really are not too worried since I can stay capped for hours at a time. So I should probably put the warning out there not to try this at home but there might be a few other trach toddlers out there who might want to give it a shot and some parents who are not currently having heart palpitations watching my video - to those of you have fun - let us know how it goes!
Peyton Nicole Smith
Monday, June 6, 2011
I just finished reading "Two Kisses For Maddy" a few weeks ago. If you aren't familiar with it, a woman gave birth prematurely to a little girl after several weeks of hospitalized bed rest. The next day when she got out of her hospital bed for the first time to visit her child in the NICU she passed a pulmonary embolism and died. "Two Kisses For Maddy" is the story of how her husband coped with the loss of his wife and birth of his child within 27 hours of each other. It was a book I knew I wanted to read but dreaded reading and I sobbed many times. And today I was horrified to learn that a fellow "trach mommy" passed away the day after giving birth to her second child. Her first child had Pierre Robin Syndrome and was trached (and later decannulated). Just hours after posing on the trach forum about the birth of her second child she also passed an embolism and was later declared brain dead and removed from life support. Karin was someone special - not just because she was a trach mommy - but because she could always be counted on to offer love and support to all the others on the trach forum. Even after her son was decannulated she still commented often - not forgetting the rest of us still on our trach journeys. Although a trach child's death is heart wrenching it isn't altogether unexpected with these kiddos. But the death of a trach mommy leaves the rest of the trach community stunned and numb. Bless her husband, bless her son Alex who got to experience her fight to get him to where he is today and bless her new baby Brycen.
It was a beautiful summer day and what better way to spend it then to support a good cause! Travis and I joined around 2500 other bikers to Ride for a Cure for MDA. It was actually the first time I had ever even gotten on the motorcycle we purchased a few months back. While Peyton was happily spending a day with her Grandma and Papa Smith, Travis and I rode down to the Salt Lake Harley Davidson dealership and then headed out to Wendover with the group. I still get chills every time I hear the sound of hundreds of motorcycles start their engines. As we rode down State Street to the freeway we had a police escort and a gigantic American flag flying above a Salt Lake fire engine.
It was a hot and windy ride and we made our first stop at a gas station in Delle, Utah. Although many riders were partaking of a cold beer, we were happy to stretch our sore muscles and snap a few pictures before getting back on the road. We made a final stop at the rest area 10 miles before Wendover. It just so happened that we were ready to get back on the road when the police escorts were transferring a person with MDA onto a motorcycle and then rode them in with lights and sirens flashing. If I had chills at the start of the ride, it didn't even compare with following just a few bikes behind this police escort for 10 miles. Amazing and emotional.
We had a few hours to rest and eat before getting back on the road and safely making it back home. From the news last night they believe they met their goal of raising $200,000 for MDA which will help to go towards research and sending children with MDA to summer camp.
Peyton Nicole Smith
Today was my last day of preschool for the year and my last day at USDB forever. End of August next year I will begin preschool at a school in the Canyons district - my local school district. I will be in a preschool program with mostly children who have IEP's like me but with a few "paying customers" from the surrounding area. Although Mommy was conflicted about the change, after seeing me fit right in to the preschool class when we went to observe it she is feeling good that I will do just fine. You can see the photo above of my last day of school as compared to my first day of school. What a big girl I am becoming!
Thanks so all the teachers and therapists at USDB for a wonderful year. Sarah you have been such a great teacher and best of luck with your surgery and master's program this summer. And a big thank you to my Grandma Glenda who was my "nurse" this year. Not only did I have to go to preschool - she did too!
Peyton Nicole Smith
Dr Morales and Mommy talked briefly about the future. Since Dr Morales doesn't want to do anything for six months we will be spending a lot of time just waiting for the bone to heal before deciding where to go next. In the meantime, there is a craniofacial panel appointment coming up in July so Dr Morales would like to see a panoramic xray of my mouth at the panel appointment so Mommy has that to schedule between now and then.
Peyton Nicole Smith
Wednesday, June 1, 2011
In the course of daily life it is easy to forget all the wonderful things about your spouse and concentrate on the 150 things they did that irritated you that day ; )
Tonight Peyton wanted to "swim like a dolphin" like she saw her cousin Jackson do a few nights earlier when she watched him take a bath. Now swimming like a dolphin in the bathtub would be no big deal were it not for that dang hole sitting in the middle of her neck that leads right to her lungs! So when Peyton asked tonight while she was in the bath to "swim like a dolphin" my safety conscious Mommy side immediately jumped in and said "no" (okay probably more like "hell no what are you thinking that could kill you"). Peyton immeadiately started sobbing and I sighed in exasperation. Really - it's not like I want to have to tell her no, it is more than a little challenging to explain to a 3 year old why her cousin is allowed to but she can't.
That's when Daddy stepped in. He went and got her cap and put it over her trach. Although it is not a surefire way to keep water from getting in, it does a pretty good job. Then he had Peyton lay on her belly across his arms and he made sure her neck and head didn't get in the water. And with Daddy holding her up from the bottom of the tub, Peyton swam like a dolphin! I like to invision her as one of those rare pink bottlenose dolphins - after all how many trach kids do you see swimming? It is moments like that when Daddy is willing to take a chance and say yes to let her be a kid and not no because she is a trach kid that stop me in my tracks. He loves her unconditionally and will do anything for her. He's been doing it all along - designing an "iv pole" for her walker, dying her trach ties girlie colors, adding a doorbell to her bed so she can get our attention when she can't get to our room. Instead of expecting her to change her life because of the trach/gtube he is finding ways to change the world around her so she can live life without compromising. Just one more reminder of why I love him - I think that moment gives him a pass for 150 irritating things in a day, maybe even 200!
The cake was yummy and super cute so if you are looking for a cake or cupcakes you can find her here:
Peyton Nicole Smith
When we arrived and got unloaded I got to jump in the bouncehouse with Jackson and Collin. Mommy, Aunt Kristin, Shannon and even Uncle Lonnie eventually joined in the fun too! Jackson was all about playing and not about getting his photo taken so he looks pretty grumpy (turning 3 is hard work)!
Peyton Nicole Smith