Med roller coaster

It has been a rough couple days, Mommy can't even help me remember what has happened.  I had an increase in my valium after a phone conversation with the Dr. on Wednesday night.  I had an ok day yesterday but everything seemed to hit the fan this morning.

My nurse Ines was here to take care of me and boy did I give her a workout.  The morning started out ok, but I woke up after my first feeding with a little distress and had to stop eating.  My heart rated started to increase slowly.  I got a nice steam bath which helped me get up some congestion and brought my fever down but that only lasted a little while.  

We tried everything to stop my heart rate from going up but it climbed up into the 160s to 210's and it stayed there until almost 4pm.  My therapist Siobhan came at 1:30pm today to do a little physical therapy.  That helped calm me down for a little but I was back up in the danger zone in no time.

After 4pm, I started to eat again since I had only had 50mls so far today.  Daddy and I got to snuggle and eat some food.

We talked to Dr. Gien again tonight and we are going to increase meds again.  It is so hard to keep track of all my medications and the amount of food I get.  At the end of September, we decided to keep a log of my medicines and food that I get each day.  At least every hour I am getting something so we found it easier to track everything in my journal. 

I am all changed and ready for bed.  I am still so tired from today that Mommy was able to get me dressed in my pjs lying on my back.  I usually get pretty stressed when lying on my back, but I was so sleepy that Mommy even had time for a picture.  We are all snuggled in bed now and getting a little more food to keep me hydrated for the night.

Good night!

Happy 1st Birthday to me

The house was bustling today with lots of people saying Happy Birthday.  Mommy and Daddy got lots of cards, calls, emails, skype's and texts from our friends and family wishing me a happy birthday.  Last night Mommy and Daddy talked to Dr. Gien and we decided to change my morphine from as needed to every four hours because that would tell us if I am in any pain.  It seemed to work well last night but this morning was a different story.  I was having some pretty intense seizures this morning and lots of secretions.  After an early dose of my valium and phenobarbital, I finally fell asleep.  I did open my eyes for a little while to see the pretty balloons that Nana Shea bought me and the pretty flowers, balloon and bear that Uncle Rich bought me.  Finnegan liked them too:)

I fell back asleep until about 6:30 and apparently, I woke up just in time to to enjoy cake.  I got out of my crib to enjoy cake with my family.

You may notice a piece missing from my cake.  I think my brother may have gotten hungry before singing happy Birthday...  I was going to put my kitty cat outfit on that Nana and Pop-Pop Reed bought me but I didn't wake up in time to get changed.

Then I opened a few gifts.  The Oxman's, a family from Brody's school made yummy marscapone with strawberry glaze cupacakes.  My neighbors, the Freedman's bought me snuggly burp cloths that looked liked cupcakes in their box.  

I got a few cards, some pjs from Mommy and Daddy, a fuzzy blanket from  my nurse Heather.  It was a great birthday but I am tired again so it is time for bed! 

We spoke with Dr. Gien again tonight and to help with my seizures, we are going to increase my Valium again.  That will hopefully help my more intense seizures I have been experiencing.  

Good night and thank you to everyone for making my birthday so special.

Hand Holding

It was another difficult first part of the night and a very peaceful day.  I slept most of the morning and early afternoon and then woke up this afternoon just in time for a bath with my nurse Joy.  Boy did I give her a surprise when right after my bath I had big poop!  Good thing she got my diaper on because it would have gone everywhere.  Then I gave her another surprise by pooping again.  Daddy's cousins Dorthea, Chris and Christina stopped by for a late afternoon visit.  I hadn't seen them since I was almost three months old so it was great to hear their voices again.

I hadn't pooped in a while since I wasn't able to take my feedings yesterday and Saturday so my nurse Joy was able to catch up today.  I fell back asleep after my big poop and then woke up again in time to see Mommy get home from work.   After a nebulizer, morphine, hyocyamine, versed and finally coughing up congestion I finally calmed down and fell asleep again.

I got to hold Nana Shea and Brody's hand this evening while Mommy took a picture.  

Shortly after my picture I woke up again and Daddy gave me another round of medicine and nothing seemed to work. My night nurse Beth is here now and hopefully she can get me to calm down.  

Relentless Fever

I've had a rough night and day today.  We have been battling a fever pretty much all night and all day.  I cuddled with Daddy the first half of the night and then snuggled with my Mommy.  It is amazing how I calm down when I have a hand on my head and hold Mommy or Daddy's hand.  I know it is not easy to do when you are trying to sleep but they suffer through the loss of feeling in their arms!

I'm still not tolerating my food very well so we have added Pedialyte to the menu.  My fever got pretty high this afternoon but it finally came down after a few doses of Tylenol and Motrin.  I am resting very peacefully with a cloth on my forehead.

Night off

Mommy took the night off helping me blog so her and Daddy could go out to dinner with my Uncle Jerry.  My nurse Heather watched me last night and Nana Shea took care of Brody so Mommy and Daddy could enjoy their night out.  I gave my nurse Heather a tough time last night.  My seizures, respiratory distress and just plain discomfort lasted from 9pm to almost 4am.  I had periods of restfulness but something always seemed to wake me up after a short time.  I finally gave in around 4am and slept soundly until 9am when the distress started up again.

Nana got up early with me today and let Mommy and Daddy sleep in until 8am for the first time in a long time.   Mommy and Nana gave me a bath while Daddy took Brody to his Saturday soccer class.  I coughed up a bunch of congestion and then I gave everyone a surprise by pooping in the tub - what a mess I made!  Mommy said she was happy I did it in the tub because if it happened after I was all clean that would have made her mad.

I was up and down all afternoon but did not have a fever all day.  My feedings have been getting very difficult because my heart rate soars and I wake up as soon as someone tries to put food down my NG tube.  Needless to say, I haven't got much food in my belly today.

After dinner I woke up and got to spend some one on one time with Nana Shea.

While I was spending time with Nana, Mommy, Brody and Finnegan were watching Cars 2 for the 5th time.  Finnegan is usually skittish with Brody but he sure did snuggle up on Mommy and Brody's laps! Every once in a while he will snuggle up with me too.

Cupcake

I have tried to wear the special outfit my Aunt Kathy bought me for Christmas but my fever has kept me from wearing it since it is too warm.  But today my fever was low most of the day so my nurse Tiffany got me in my pretty cupcake dress!!

I had another rough morning which included lots of medication, nebulizers and suctioning.  My heart rate was high all morning even though my fever was pretty low.  Our surprise guest arrived today too...drumroll please....it is Nana Shea!  She arrived after noon today and we got to hang out for a while.

My afternoon got better around 2pm when my heart rate started to drop back down to normal ranges and I finally fell asleep!  I slept soundly until just around now (8pm).  What a way to say hi to my nigh nurse Beth:-(  Nana Shea bought me a cute new stuffed horse to cuddle with while I sleep.  My brother came in to say goodnight while I was snuggling with my horse which was fun.

Worn Out

Mommy heard something she hadn't heard in a while from a night nurse, "It was her best nice yet"(a quote from Darlene).  Mommy thought maybe I was getting better, but when she talked to my nurse Tiffany this afternoon, she found out that I had an awful morning and it took me a long time to settle down.  My seizures seemed to really be effecting me, so she told Dr. Gien it was probably time for a medicine increase to help my seizures.  We increased my phenobarbital and versed doses.

I woke up again with seizures and respiratory distress this afternoon and two doses of the Versed seemed to help this time along with a little fever reducer.  I have now been sleeping soundly since 4pm which is a very long time for me these days.

I think my sleepiness is because I am totally worn out from this morning and afternoon!  Mommy and Daddy love to see me resting peacefully.  It is so difficult both emotionally and physically for everyone when I am having a rough time with the seizures and respirations.

My surprise guest arrives tomorrow and I can't wait to find out who it is....

I got some snuggle time with Mommy this evening.  It is often too difficult to hold me since I need lots of suctioning, medicine and attention when I'm in respiratory distress.  Mommy tried, but finally decided to put me down after about an hour of trying to get me to sleep in her arms.

Even after she laid me down in my crib, I would calm down enough for my heart rate to get below 120 and then for some reason would wake up again with seizures and a high heart rate.

My night nurse Darlene is here to take care of me now and hopefully I can fall asleep soon.  Typically it isn't until after midnight that I am able to sleep.  Mommy told me tonight that we have a surprise visitor on Thursday and I can't wait to find out who it is!

Same, not good

Today was pretty much the same as the last few days, not good.  Just after my first feeding of the morning I woke up with lots of congestion and seizures.  It took most of the morning for my nurse Joy to get me comfortable again.

My hospice nurse Lynda stopped by for her normal Monday morning visit.  It was the first time she had seen me in over a week and she said I looked relatively good but she could hear the difference in my lung sounds.  Lynda spoke with Mommy and they talked about what to expect in the coming days.  That seems to be the hardest part for everyone including myself, we just don't know what to expect.  I catch Mommy and Daddy just staring at me and they say they are trying to memorialize every moment in their heads.

I had another rough patch with lots of respiratory distress this afternoon, but a few doses of Versed and finally some morphine along with a cold rag on my head got me calm.  I am still resting comfortably now so Mommy decided to take my picture.

Snuggle time

I got to snuggle with Daddy during nap time yesterday and he helped to get me calmed down.

Then, I got to snuggle in bed last night with Mommy and she held my hand almost all night except for the short times when she had to get the blood circulating again in her arm.  I was a pretty good girl but was still fighting my fever and lots of congestion.

This morning was another rough one and I am now starting to really hate the suction machine.  I spent most of the morning coughing up congestion during and after my bath and would cough so hard my body was convulsing.  I would make my sour face every time I heard that awful suction machine turn on.

Here I am getting my daily exercises and Mommy even tossed in an Albuterol nebulizer treatment to try and help ease my labored breathing.  I was able to sleep and relax this afternoon probably because I was so worn out from this morning.

Mommy put my new sheet on my bed from Nana Reed.  So far every time Mommy has put the new sheet on my bed, I have a big poop that day and we have to wash the sheet so she hasn't been able to get a picture.  It has been on my bed for one day now so we set a record!

My nurse Heather is here to take care of me tonight so Mommy and Daddy can get a good night sleep.  We could all use a good night sleep tonight.