Rough Night, Good Day!

I had a tough night with my nurse Beth....another HUGE poop stressed me out!  It went all over the place so we had lots of cleaning and soaking to do again.  I was in respiratory distress for a lot of the night and finally settled down this morning for my day nurse Joy.  I really had a good day but woke up this afternoon with seizures again and so I wasn't able to get my afternoon feeding.

Mommy and Brody got home and I was just calming down after a dose of morphine and I was trying so hard to stay up to see Mommy - see the video below.

I finally kept my eyes closed and Mommy and Daddy were able to get a feeding in me.  I am still resting comfortable now while Mommy is scrubbing my blankets and clothes from last night's big poop.  Fingers crossed that we don't go through that again tonight:-)

Happy Halloween!

It was another tough night last night and I gave Daddy a very hard time.  I was up until just after midnight and then every few hours throughout the night.  This morning started out rough and then I fell asleep!  I slept and slept and slept!  I was able to get all my feedings in today and really had a great afternoon.

Then my brother came home and was very loud and excited for Halloween and Mommy was sure all the noise would wake me but I stayed asleep.  I even put on my Halloween headband and special outfit and I still didn't wake up!

I didn't get to go trick or treating but I did get to see some of the trick or treaters who came to the front door!  I just coughed up a lot of congestion that had been building up for a while and now I feel so much better!  I am all changed in my PJs and ready to get some sleep.  Hopefully I give Beth an easy time tonight.

All Hallows Eve....

It was another tough night in the Shea house.  I went to bed early with Mommy but we were up every hour or two trying to get me settled or comfortable.  I was having lots of seizures and much more mucus than normal so Mommy was doing lots of suctioning all night. 

This morning, Mommy and Brody went to his friend's birthday party so I got to hang out with Daddy!  I slept until about 9pm and then was up having problems again.  It is so hard to tell when I am sick because I always sound like I have lots of congestion, but I just haven't been myself the last few days.  Plus I woke up this afternoon with a slight fever.  Mommy and Daddy will be monitoring it to make sure it doesn't go much higher...it is around 100.6 now. 

Brody put on his costume again this afternoon to go over to the neighbors house and was modeling for me....

I will get to model my halloween outfit tomorrow.  Mommy wouldn't let me put it on in case I decided to had another HUGE poop:-)  Daddy got to finish carving his pumpkin today and I must admit, he gave Mommy a run for her money!  

I am asleep now but I'm sure I will give Daddy a rough time tonight.  Only two more Sunday and then my new night nurse starts!  I got to meet her on Friday and she seemed very nice.

 

Spooky!

It's been a rough day and night.  I had an awful night last night which started out with a HUGE poop that really stressed out Daddy.  There were wipes flying everywhere trying to control the mess but it still got allover the place.  I was up every hour or so with either seizures or respiratory distress so Daddy didn't get much sleep.

My brother was up early to play soccer so I stayed home with Mommy.  The morning started out ok but I was up again a bit later with seizures and lots of secretions.  Mommy tried giving me a bath but that didn't work like it usually does.  

During the bath, she did realize that I am getting too long for my baby tub!  Looks like a trip to the store for Mommy!

All these extra secretions today make Mommy and Daddy think I may be getting sick again.  It is so hard to tell, but I have definitely been acting differently.  This afternoon we got to carve pumpkins!  Mommy carved a cat in her pumpkin and Brody wanted a happy face, so when it was my turn, I asked for a T!  Daddy keeps talking about his carving skills so Mommy is going to let him do his pumpkin on his own.  We'll see what he comes up with.

  I haven't been able to tolerate my feedings today and I am at about half of my normal intake.  I am all set for bed with Mommy now and am having a very hard time falling asleep.  My fists are clenched so tight near my face that it looks like I'm about to enter a boxing match.  I think I may get my valium a little early to help calm me down.

As you may have noticed there is a theme to all my photos.  I am always laying down on my side because that way keeps the saliva from building up in my back of my throat since I still can't swallow.  I get very nervous and the seizures start-up if Mommy and Daddy put me on my back so I am only in that position when absolutely necessary!  I do like to lay on my tummy sometimes too but I can't always tolerate my feedings that way.

I am usually not being held either because it is so hard for Mommy and Daddy to suction me and give me my medicines when they have to hold me too.  Lots of movement makes me upset too which brings on the seizures so I am most comfortable snuggling on the couch or in my bassinet.  I do like to snuggle every once in a while but whoever I'm snuggling with must be prepared to "camp out" for a while:-)

I had a very busy day today with my nurse Tiffany.  First I met my new night nurse Heather who came to meet me and and learn the ropes.  Heather will be working Wednesday and Sunday nights so Mommy can get sleep before they have to go to work.  Then my hospice nurse Lynda showed up and weighed me - I am a whopping 15 pounds and 1.5 ounces!  That is almost half a pound heavier than my last weigh in.

My Brother spent the day at his friend Owen's house and he was wiped out when he got home!  We all had dinner (I'm still finishing mine) and are getting ready for bed.  We just spoke with Dr. Gien and we decided to up my Valium dose since I'm still having seizure episodes that are requiring morphine.  The goal is to not need morphine every day so we will give my new Valium dose a go this weekend and see if I stop having these seizure break throughs....

Snow Day

It was a chilly one today and boy am I glad I got to snuggle in the warm house with my nurse Tiffany.   I had a pretty good night but had a tougher time this morning and early afternoon.  I'm still getting morphine usually once or twice a day to help keep my seizures at bay.  We are also using Hyocyamine to help keep my secretions down that seem to really bother me once the seizures start.

Daddy got home this evening and was cleaning up all the branches that fell from our beautiful ash tree.  The tree still had most of its leaves and the heavy snow that fell today was just too much for the tree to hold so we ended up with lots of broken branches in our yard and the neighbors.

Hopefully the cold temperatures don't cause more branches to fall tonight.  Since we had so many trees down in our neighborhood it will probably be a while before the tree cutting folks will be able to get to the house to chip up all the branches.  Poor tree:-)

Then my brother Brody made Mommy take some pictures of his race cars....

And then I told Mommy to take a picture of me!

I woke up shortly after this picture and Mommy held me for a while.  I was having some seizures but eventually coughed up some mucus and was able to fall back asleep.  My night nurse Darlene is here tonight to take care of me and I am about to get another feeding since my rough morning set me back just a little.

Good Day - Good Night

I had a relatively good last night and good day today.  The phenobarbital and valium combination seems to be helping keep me calm.  I still have moments of seizures and anxiety but it usually is because I'm having trouble managing my congestion and sometimes it is because I have to poop!  I have really put my pampers to the test the past few days and boy did they fail.  I don't think any diaper could have handled that task I gave them.  Mommy said I might as well have been wearing nothing.

My nurse Darlene is here tonight to take care of me and we are all hoping that we don't get too much snow tonight.  I am all snuggled in my pajamas and resting with my blankies.  Now I just need some hot cocoa and a fire.

Bye Aunt Kathy!

It was a fun few days with my Aunt Kathy but I had to say goodbye today.  Mommy and Aunt Kathy did some shopping today before she left and they brought home some really cute stuff I can't wait to wear.  You will see me sporting some cute new outfits over the next few days.  I hope you had a great flight home Aunt K and I can't wait to see you again.  We will all miss you.

I had another up and down night last night and an pretty good day.  My nurse Joy left this afternoon and I of course started to wake up and give Mommy trouble.  Mommy was doing some work in the kitchen when she heard me cough and came running in.  She helped me clear out a bunch of congestion I had brought up and the n I had the biggest mushy poop ever.  It went everywhere but boy did I feel better.  After a pack of wipes, many ruined blankets and a change of clothes later I was finally settled down.   My night nurse Beth is here tonight.  Buenos noches!

Fall is in the air

My night was typical...up a few times with seizures and taking a half hour or so to fall back asleep.  I got to spend all morning and a majority of the afternoon with Daddy while Mommy, Aunt Kathy & Brody went to Anderson Farms to pick pumpkins and hang out.

My brother Brody brought me home a beautiful pumpkin but we didn't get a chance to carve it...maybe next weekend!   After everyone got home, Aunt Kathy watched me while Mommy, Daddy and Brody went to celebrate Celia and Isabel's birthday!  I was a really good girl for Aunt Kathy and didn't give her too much trouble.  They didn't stay out too long.

Once everyone got back from the party we made some dinner.  I was up and down this evening and it seemed like I was always trying to cough up some congestion.  I coughed up some brown stuff which made Mommy and Daddy a little nervous.  I've had so much drool recently that it has been hard to keep the tape on my face to hold down my NG tube.  It was getting pretty loose so we decided to to change the tube and noticed a brown discoloration on the bottom of my tube...we will have to check that out with the doctor tomorrow.

Family Fun

There was lots of bustling activity in the house today.  I got to meet my aunt Kathy for the very first time today which was so much fun.  She sounded just like Mommy and they even look the same too!  Then my special baby sitter Marsha came over so Mommy and Daddy could go out to dinner with Aunt Kathy and great Uncle John and Aunt Marie.  I was such a good girl for Marsha and slept the whole time she was here.

When everyone got back from dinner we got ready for bed and just hung out.  Brody got to read a couple of stories with Aunt Kathy while I hung out with Aunt Marie and Uncle John.  It was so nice to have my family around me.  Even though I was snoozing, I still love hearing their voices and feeling them grab my hands.