Friday, June 6th, 2008

Today there were times I was happy and then other times not so much. Marianne left at 7 and Mommy got up about 6 to see how I was doing. I spent a little time in my walker but wanted to be held most of the time. Marianne said I did just fine on the Pedialite and only woke up twice - about 15 minutes each time. Lucille showed up at 8:30. She was so happy to see me, although I didn't want much to do with her this morning. Mommy rocked me to sleep about 9:30. At 10 am while I was still sleeping, Daddy gave me my Tylenol. After 30 minutes it takes effect so my parents can turn the screws. A little after 10:30 I woke up and it was time to turn the screws. I was definately not happy but after about 30 minutes I calmed down enough that Mommy could give me to Lucille. Then, my parents and Papa went to get something to eat and pick up my brothers from boarding.

Henry and Chili were so happy to see my parents and each other! It's the longest they have spent apart. When they all got home Lucille let them know I had done just fine while they were gone. About that time, Sherry from the home health agency showed up to review my new plan of care. She was there about two hours. During that time, I was playing on the floor where she could see me. As Mommy explained all of my symptoms, Sherry asked a question - when was the last time I had a dirty diaper? Mommy said it had been sometime Saturday. A few minutes later, I threw up a little and it was orange. Now my parents had given me my Tylenol almost five hours earlier but it obviously wasn't moving through too quickly Also, when they changed my diaper, the area around my button was soaking wet and also orange. Sherry was pretty sure that I was constipated. She recommended that Mommy call my pediatrician to see what she would say since my GI never ended up calling back.

After Sherry left I went down for a short nap and then it was time to turn my screws again. I was pretty upset so Mommy walked me outside as Lucille left for the night. The rest of the evening I was fussy off and on. When Mommy didn't end up hearing from the pediatrician, she put a call into the oncall pediatrician. Dr Chang called back and recommended adding prune juice to my regular formula feedings. Mommy and Papa made up a big batch for the next 24 hours. I went to sleep pretty quickly but was very restless and ended up waking up right before Marianne showed up at 11 pm. She was also concerned that I hadn't had a dirty diaper in so long so she thought it would be best to discontinue the formula feeding and change it back to Pedialite but add prunce juice to it. That would allow me to stay hydrated and get the prune juice but prevent me from getting more constipated from the formula. I was crying as my parents went off to bed but it only took a few minutes and Marianne had me back to sleep.

Peyton Nicole Smith

Thursday, June 5th, 2008

I had a pretty good night for Mommy last night. Although Mommy was awaked about six times or more by nurses coming in and out to check on me and give me meds, I slept until 4:30 am. About 7:30, Dr Looby came by to turn the screws with Mommy. Daddy and Papa were on there way but missed it by just a few minutes. Mommy did one side and Dr. Looby did the other. I wasn't really happy but I calmed down pretty quickly.

Within an hour or so, Dr Schendell came by and said I was free to leave! My parents had to wait for some paperwork and my medications to be filled so they went and got some breakfast while Papa stayed behind with me.

The next four hours were very frustrating for my parents and Papa. My morning nurse was MIA. Although my parents and Papa kept checking the nurse's station to see where it was and why the paperwork was taking so long the nurse never came by. Another nurse sent the medication order down to the pharmacy so Mommy could go pick them up. Finally, the nurse came back with the discharge papers. My Daddy had just signed them and we were ready to leave (just moments before the picture in the yellow outfit above) and I threw up all over Mommy and the floor. When Daddy asked the nurse, "Should we be worried about that?" The nurse replied, "Oh no, maintenance will take care of it." Now that is not what Daddy meant but my parents were so frustrated at that point that they decided it was better to just head home.

On the drive, I threw up a little more once and then some time later when my Mommy adjusted my seat belt I started dry heaving. Mommy was kind of worried that maybe something was wrong with my Mic-KEY button. After we got home, my parents hooked me up to Pedialite but about an hour later when Mommy picked me up, I threw that up too. My parents decided to call my GI, Dr Davies and Lucile Packard Hospital. Dr Davies and Dr Looby thought it might be an upset stomach from the medications. Dr Looby recommended reducing the Tylenol codeine to half the dose. Dr Davies said not to give me anymore antibiotics and she would call in the morning. To rule out the Mic-KEY button, my parents changed that too. They put me on straight Pedialite for the night to see how I would do. Marianne showed up at 10 pm so it was off to bed for everyone.

Peyton Nicole Smith

Wednesday, June 4th, 2008

It was a day of ups and downs. First off, the night went pretty well. I only woke a few times but upon seeing my Mommy I would go back to sleep pretty quickly. Mommy didn't get much sleep - there were a few times she needed to suction me but the nurses also came in and out a few times to check my blood pressure, change my feedings and give me medication. Mommy noticed a pattern that when I was given anything through my IV (antiobiotics, pain medication, flushes) that I got really upset and started crying. After several times of this happening it was decided that there was probably an issue with the IV and a new one should be started elsewhere. The night nurse had a call put in to have that happen during the day shift.

Bright and early it was time for my screws to be turned. Since Daddy and Papa were still at the hotel, Mommy watched the resident turn them. I didn't like it that much but after crying for a little while I eventually fell back asleep. The resident said that my parents will need to turn the screws twice a day - three turns each time. If I can tolerate it twice a day it reduces the total distraction time from 24 days to 12. Mommy asked when I might be discharged and he said it wouldn't even come up for discussion for a few more days. He said most parents refuse to turn the screws and want the baby to stay inpatient the whole time so the doctors do it instead. Not that my parents want to turn the screws, but they would much rather have me home then in a hospital.

When Daddy and Papa showed up, Mommy hopped in the shower and then Mommy and Daddy ran to get some food in the cafeteria while Papa entertained me. Mommy asked my nurse if she could hold me and he didn't think that was a good idea. When a social worker stopped by, Mommy told her how disappointed she was that she couldn't hold me and the social worker put a call in to my doctor to see if it would be okay.

Mid-morning, Papa read me a story while we waited for the folks to come check out my IV. When they did show up, Mommy made sure to leave right away since she can't stand needles and blood. When she came back a little while later and they were gone she was all excited - but too soon. The lab folks had just looked for some potential spots and were going to return in about an hour. Meanwhile, the nurse gave me some medication for pain since he said the doctor was on the way to do some type of procedure.

Sure enough, the lab folks and Dr Schendell and his nurse, Elena all showed up around the same time. When Dr Schendell found out they were trying to move the IV to another spot he said not to bother. I can get my pain meds and antiobiotics through my g-tube and he was planning on discharging me tomorrow anyway. My parents were pretty surprised! Dr Schendell and Elena had showed up to turn the screws and show my parents how - thus the reason for giving me pain meds ahead of time. Elena turned the left side once and then Mommy turned it two more times. Then it was Dr Schendell and Daddy's turn. I started crying but calmed down pretty quickly afterwards. Elena said ther was no reason I couldn't be held and taken out of my crib so Mommy picked me up right away! Mommy held me in her lap and eventually I calmed down and was much happier then I had been most of the day. Dr Schendell said that instead of morphine and tylenol with codeine they are going to give me motrin every six hours and then tylenol with codeine every four hours. Instead of waiting to get it when my parents ask for it - they are going to keep me on a dosing routine going forward and when I am home as well to prevent me from getting too uncomfortable.

A short time later, someone came by to give me a mobile for my crib and a fun drum to play with since I couldn't go to the outside play area. That kept me entertained for a long time. I tired myself out and fell asleep. My parents and Papa took advantage of my nap to go get some dinner. They got back a little after 7 and found out I had awoke for a little while but had gone back to sleep. Pretty quickly I was awake and it was time to play again. Mommy held me for awhile and then it was Daddy's turn. I was very happy tonight and almost back to my old self.

A nice lady came by and wanted to know what movies Mommy wanted for the night. She had a long list to choose from and decided to (finally) watch Finding Nemo. We all got to watch some of the movie together before it started to get late and Daddy and Papa headed back to the hotel. Mommy and I watched most of it but the DVD must have had some scratches because it stopped working so well. Mommy turned it off and watched some TV instead while I drifted off in my crib.

It was a very long day, but a pretty good one. I found out my Aunt Kristin was well enough to go back home today. She beat me by one day!

Peyton Nicole Smith

Tuesday, June 3rd, 2008

I had a pretty good night last night and my day nurse, Lisa, told my parents and Papa so when they got here in the morning to visit me. In fact, in the time it took my parents to have breakfast and get to the hospital this morning a lot had happened. (You'll have to ask my Mommy about accidentally playing footsie with Papa at breakfast, oops!) You can see in the pictures above that they had removed my bandages and turned my screws for the first time. Lisa assured Mommy that they gave me a dose of morphine before they did it and an extra dose afterwards to make sure it didn't hurt too much. My family could tell immeadiately that I was going to be a different girl today. My eyes were opened and as soon as I saw my parents I started crying and trying to reach for them so they could pick me up. Unfortunately, with all of the tubes they can't do that right now so they tried to calm me down instead by rubbing my head and talking to me. I had been able to keep my lovie with me and I started rubbing it against my face and bringing the tags to my mouth. I also tried to chew on the rubber string from the trach mist mask just like I do at home. I was "playing" just a little with my familiar objects which was a good sign. I would spend time sleeping while my family was hanging out around my bed.

Mid-morning, Papa and my parents went to get some coffee from the cafeteria and then headed up to the roof of the hospital. You have to get a special code to get to the roof and it is only open during daylight hours. My family wasn't able to go up last night because they had already closed it for the day. Although the day started out overcast, when they made it up to the roof it was a beautiful sunny morning. They had a great view of the area around the hospital and there was a nice breeze blowing. The roof area has been planted with lots of flowers and trees so it is a nice, quiet place to relax and get away from the hospital atmosphere. The hospital is designed like a circle with a courtyard in the middle and you can see a view from the roof of the courtyard down below. After a little walk it was time to come visit me again.

I slept alot during my family's second visit. My parents were happy to see that I seemed a lot more comfortable then I did last night, they upped my dose of morphine to make sure I wasn't in as much pain. You can see the screws from my distractors in the picture above. I know they look kind of scary but they aren't too bad. In fact, I was sleeping most of the morning against one of the screws and it didn't bother me too much. The hospital chaplin, Scotty, came by to say hello to my family and check if they needed anything. They have a prayer request book in the chapel that Mommy will try to add something to later for me and for my Aunt Kristin as she isn't feeling so hot. She is going to go back to the hospital tonight so both she and I will be hospitalized at the same time : (

My parents and my Papa left me sleeping and headed back to the hotel for some downtime of their own. When they came back to see me a few hours later I had been a busy girl. My nurse, Lisa, gave me a bath, put me in a nightgown and put my hair up in a ponytail. I was completely alert watching the TV above my head - and ignoring my parents and Papa. After a few hours I got kind of fussy, though, and had a few incidents of spitting up. After that, my night nurse gave me some pain meds. At 7 pm my parents and Papa had to leave for 1/2 hour because of the shift change. They decided to grab some dinner. My nurse told them that when they got back I would be able to move up to the 3rd floor to the step down unit. They were very excited. When they came back about an hour later and reported to the 3rd floor, I wasn't there yet. So they headed back down to the PICU. It took another hour before the 3rd floor was ready for me. Then, two nurses pushed my crib down the hall and into the elevator with my parents and Papa following. They took me into room 25 on the 3rd floor. What a difference. I'm such a big girl that now I have a room all to myself. There is a bathroom with a shower for my parents and a sleeping area for one of my parents to stay with me. My room has a nice big window and lots of storage space for my things. Although my parents were very happy that I could stay in the big girl room, it also means that there is only 1 nurse to every 4 patients. In the PICU it was 1 to every 2 patients. Also, the privacy of my own room is nice but it also means no one is really watching me very much. Mommy decided she would stay with me tonight so that she wouldn't spend all night worrying about me.

Once we got all set up in the room, it was play time. I was feeling so good that I wanted to play with Papa trying to get his nose and pulling his hair. Before long, it was getting late and I was getting sleepy so Papa and Daddy kissed me goodnight and then it was just me and Mommy. She turned on "Cars" for me to watch from my crib and it was off to sleep (at least for me)!

Peyton Nicole Smith

Monday, June 2nd, 2008

Last night I was allowed to have formula until 2:30 and then Pedialite until 5:30. Despite me sleeping like a log and my alarm only ringing off once - there wasn't much sleep in the cards for my Mommy (and as a result my Daddy). Mommy decided at 3 am that she might as well get in the shower since they planned on getting up at 5:30 anyway to get ready. Daddy wasn't so happy about that though since he had been sleeping okay!

Around 6:15 my parents finally had to wake me up to get me changed to go. My hair was out of control! Mommy put me in my pink flamingo jammies to go to the hospital. Then my parents, Papa and I got loaded in the car and we were on the way to the hospital by 6:30 for my 7 am check in. Check in went pretty quickly and by 7:30 my parents and I were in the preop area. There was a bunch of people asking my parents lots of questions. My Mommy dressed me in my hospital gown and then wrapped me in warm blankets since it was so chilly. So that I wasn't sad when they took me away for surgery, they gave me some medicine in my g tube that made me kind of loopy. (Mommy asked me if I would mind sharing some of the medicine with her). Then they let Papa come back and before I knew it, we were all walking down the hall. When we got to the surgery doors, Mommy handed me over to the anesthesia doctors and the waiting game began for them. You would all be very proud of Mommy, although her eyes were wet, no tissues were needed. She was trying very hard to be a big girl like me!

They took my parents and Papa to a special waiting area and gave them a pager. They said about 45 minutes before the surgery was over, someone would call the receptionist from the operating room so the parents could be paged. That would give the parents time to get back to the waiting area to meet the doctor. Once they had their pager, my parents and Papa went to the cafeteria to get something to eat and some much needed coffee. They wandered back up to the waiting area. Time passed by pretty slowly for them I am sure. Daddy left after a few hours for a bathroom break. Sure enough, as soon as he walked away Dr Schendell came walking down the hall to talk to my parents. Daddy returned pretty quickly and Dr Schendell explained that I had done very well and everything had gone as expected. He said I was in recovery and that when the nurses had everything set up they would come get my parents - probably in about 20 minutes. Mommy was so relieved she finally broke down and started crying. When Papa saw her start crying then he started up too! I think Daddy needed some tissues as well! The receptionist said to plan on 45 minutes and not 20 but about 15 minutes later the nurse arrived to lead them back to see me.

I am staying in the PICU so there can be kids of all ages. However, the little area I am in there are four beds and all are little kids around my age. My nurse said that I was starting to open my eyes just a little. My parents and Papa spent about an hour with me. Every now and again I would open my eyes to look at them and cry a little and then go back to sleep. When the lab had to come get blood, Mommy had to leave the room as usual. Luckily, they just had to draw it out of my IV and they didn't have to poke me again. The nurse gave me some Tylenol with codeine for the pain. She also started me on IV fluids before I get formula later on tonight or early tomorrow. My parents and Papa were ready for something to eat and a nap, too. They gave me kisses and promised to be back soon.

Sure enough, after sleeping for awhile my parents and Papa returned. My nurse tonight is Megan. She is very nice. My day nurse had said that she thought I wasn't getting enough pain meds so Megan promised to talk to the doctors tonight about ordering more for me. She said she would make sure to keep me comfortable tonight. She is also going to talk to the doctors about putting me on medicine that will help calm me. While my parents were gone, the nurses had started me on a little of my soy formula and will continue to increase it throughout the night.

The pediatrician came by and told my parents that if there had been a bed available they would not have moved me to the PICU today - instead I would be in the step down unit where I would have my own room. The plan is to move me there tomorrow. They will remove my bandages tomorrow and probably turn the screws for the first time as well.

Karen, the hospital social worker came by for a visit as well. She wanted to check to see how my parents were doing. She was going to call Ronald McDonald House tomorrow for my parents to see if there has been an opening.

When my parents were at my bedside they noticed that my trach mist didn't have a drain bag so they had the RT come by and set it up correctly.

Even though surgery is stressful on all of us and my parents don't like seeing me in pain they still feel very fortunate. There was a little girl in the bed next to me - probably about 3 0r 4 years old. She was on a ventilator and my parents overheard the doctor calling her parents to get a phone consent to do surgery tonight to put a trach in. Mommy had a flashback to when my trach was put in. She knows how worried those parents must be. She hopes they will come to the PICU so she can talk to them about what it is like to have a child with a trach. It's scary but they will adjust.

Throughout the beautiful summer day, the sound of the LifeFlight helicopter taking off and landing from the roof was another sobering moment.

Then, as they were leaving, a child coded in a room just as they were passing it. The nurses were rushing in to the room just as they were headed out the door for the night. A grim reminder that there are children at Lucile Packard that are very sick and my parents feel very lucky that I am doing so well. Thanks for all the prayers and good wishes - I am so lucky so many people love me.

Peyton Nicole Smith

Sunday, June 1st, 2008

It's the day before the big day. After a great night for Lucille, I was up bright and early and ready to play. Unfortunately, my brother Henry had a terrible night and was in alot of pain. Mommy put him in his bed in the living room, gave him his pills and he slept all morning. Chili went back to bed with Daddy. Mommy and I played this morning while she continued to organize my machines and luggage for the trip. Mommy also took some side-view preop photos so they could do a before and after.

Mid-morning, Daddy took Henry to the vet to drop him off for his "medical" boarding. Basically, he will be stuck in a cage all day long except for potty breaks. That's fine, actually, it is the best thing for him so he can rest until his back heals. He will have the doctor and vet techs close to keep an eye on him so my parents feel a little better about leaving.

Later, Daddy left for a few hours. Mommy told me that when he got back he would have a surprise for me. Sure enough, Daddy walked in with my Papa Smith! He came to be with my parents during my surgery. I got to spend some time playing with him while Mommy went to the store to get snacks for the car ride and some lunch. After lunch and packing the car it was time to leave.

Mommy, me and Chili were in the back seat. Chili sat in his bed until we got to Camp Bow Wow just a few miles away. Papa and Daddy took him in to Camp and then we were on the road to Palo Alto. Unfortunately, I did not get my last nap of the day. I was fussy and fell asleep for about 20 minutes but was awake for most of the trip - and not very happy about it! Mommy tried to keep me entertained as much as possible.

It was about 6 pm when we finally made it to Palo Alto and our hotel. We got settled in our rooms and I checked out the hotel bed. It was nice and soft and fun to roll around on. Daddy and Papa went to go get some dinner while Mommy bathed me and got me ready for bed. I was very tired and not in the mood for bathing in the bathroom sink so Mommy ended up with more water on her then I did!

Daddy and Papa got back just as Mommy put me in the bassinet to sleep. Although my parents had bought it before I was born, this was my first official time sleeping in it. It doesn't allow much room to roll around. After about 20 minutes though I was off to dreamland. My parents definately need a good night's sleep tonight!

Peyton Nicole Smith

Saturday, May 31st, 2008

Sarah came to play with me today from noon-6, allowing my parents to get some prep done for leaving tomorrow. Daddy got a hair cut and some new shirts and the oil had to get changed on the car. My parents also got me some sleep and play one piece outfits to wear in the hospital - since hospitals tend to lose clothes sometimes.

So as not to have to do it tomorrow night in the hotel, my parents changed my trach tonight instead and then sent me off to bed while they started doing some packing. There will be more packing tomorrow for eveyone - including my brothers. Tonight they are just hoping for a good night's sleep with no whining or crying from my brothers.

Mommy found this and thought you might like to read it:


Mothers Lie

By Lori Borgman

Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close. The doctor’s words took your breath away. It was just like the time at recess in the fourth grade when you didn’t see the kick ball coming, and it knocked the wind right out of you.
Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news. It didn’t seem possible. That didn’t run in your family. Could this really be happening in your lifetime?

There’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery. Mothers of children with disabilities live the limitations with them.
Frankly, I don’t know how you do it. Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one-salutingyou, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, “Choose me, God. Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of the draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.

You’re a wonder.

Lori Borgman is a syndicated columnist and author of All Stressed Up and No Place To Go

Peyton Nicole Smith