On my back

Where to begin....I've been pretty sleepy the past few days probably trying to catch up on the sleep I have lost the past few days.  My fever has been off and on but my oxygen has stayed on good levels and my heart rate hasn't gone to high except when I'm trying to cough up some congestions or trying to poop.

I've also been tolerating my feedings and even been able to sleep on my left side and...my back!  I haven't slept on my back in such a long time so Mommy and Daddy are trying to get me to lay on my back as much as possible to see if we can re-shape my rib cage and head but that isn't going to happen overnight.

Mommy took a picture of me tonight on my back with my head turned to the side.  I still don't like to sleep with my head facing up in case I need to cough up some congestion.

Open eye strike is over!

I had a tough first half of the night last night with Daddy mostly because I had two big poops.  As you know by now, the poops really stress me out and they usually come along with coughing up lots of congestions, seizures and ups and downs with my heart rate and oxygen stats.  I finally settled down with Mommy and we slept pretty good for the rest of the night.

I was tired this morning and Mommy and I just chilled out eating breakfast while Brody and Daddy went to pick up the new hamster for Brody's classroom.  I started to wake up and open my eyes so Mommy decided to pick me up and hold me and boy did I cough up some more congestion.  I was coughing so hard I even pooped again.  We got out a bunch of thick mucus up and I was finally able to relax with Mommy...that is until my Brother and the new pet came home!

Then this afternoon I got some extra special time with my Daddy!

He decided to hold me too and boy did I give him a rough time!  I coughed, coughed and coughed up lots and lots of congestion.  Just when he thought I was done, I would cough up some more and then....I pooped!  Luckily Mommy was nearby to help the situation and believe me, it was a big situation.  I was able to get all cleaned up and I took some pictures with Daddy!

Hopefully I don't have any more poops tonight and I am done coughing.  I haven't tried to lay on my left but my nurse Heather is going to make me give it a try again tonight.  I have been able to tolerate laying on my back most of today, slightly twisted to the right with my head to the right.  If that continues we may need to further investigate that next week,

As you can tell I have been opening my eyes much more the past two days.  My right eye is still a little swollen but it has gone down a lot in the last few days.

Another surprise

Today was another surprise for everyone....I had another great night and day!  I spent last night with my nurse Heather and we had a good night together.  I must be finally waking up more from my increase in medications last weekend because I was having some seizures last night but my heart rate and oxygen numbers were great.  I still couldn't lay on my left side but boy did I sleep on my right side:)

Today I spent the morning with Mommy while Daddy took Brody to soccer practice.  I tolerated my breakfast and then it was off to the bathroom for a nice steam bath.  I even opened my eyes and gave Mommy the "don't move me" look but she didn't listen to me.  My steam bath helped me bring up some congestion but not as much as I am normally able to get up.

Then I spent the day out in the family room so Mommy could give my room a good scrub.  I heard lots of scrubbing and vacuuming going on while I slept soundly in the other room.

I got to hang out with Daddy this afternoon while Mommy and Brody went shopping for a house and accessories for a new hamster...and no, not for our house but a new pet for Brody's classroom.  They will pick up the actual hamster tomorrow and I hope he doesn't want to sleep in my bed.

Tonight, Daddy moved me back to my room and was able to keep my on my back and a little on my left side for a little over an hour.  Once my oxygen kept dropping he had to turn me back on my right side.  My right eye is very swollen from laying on that side so we will try and twist me a little so I am on my back and hopefully that will help the swelling go down.

Overall, I had a really good day with very little secretions, an oxygen level that averaged 95% and a heart rate that was less than 130 most of the day.  No one can believe it, but we are still cautiously optimistic.

Left side troubles

As usual, when everyone thinks I've had the worst day possible, I have a great 24-hrs.  I slept most of last night and needed very little suctioning.   My oxygen was fine and my heart rate stayed in the 130s which has been low compared to the last few days as long as I stayed on my right side. 

Pretty much the same thing happened today except I had a few big poops which Mommy is still finishing cleaning up from.  My nurse Ines tried to switch me to my left side again this morning but my heart rate soared again and my oxygen dropped pretty low so for now we will just stick to the right side.  

After my bath today I was able to cough up some congestion which is a big change from the last few days since I barely even woke up during my other baths this week.  I even opened my eyes, very briefly, a few times today.

My Hospice nurse Carol stopped by to check on me and she said both my lungs sounded "junky" and are equally the same which still puzzles us as to why I can't lay on my left side.  She could hear some crackling in both lungs and my heart sounded good with no extra beats.  Carol thought my stomach looked swollen and thought it could be pushing on my left lung which may explain the drop in oxygen when I am laying on my left side.  But unless we go into the hospital I think this left side mystery will remain just that.

This evening when Mommy got home from work I needed some suctioning and she saw some bright red fluid come out in my suction catheter.  It is hard to tell if that was medication or blood since many of my meds are dyed redish colors to help verify which medications I am taking.  The only thing was it had been a while since I had taken any red medicines.  We will keep an eye on that tonight.

I pooped again tonight so that gave Mommy a chance to hold me while Daddy cleaned up my crib.  I changed into some new PJs and got some time with Mommy and Brody while Daddy took the pictures.  It was the best my heart rate and oxygen had been all day.

Tiger Tessa

That is what I have been the last 24hrs, a very strong girl with the will and power of a tiger!  My oxygen has really been a problem since Wednesday.  I have tried to lay on my left side multiple times since last night and each time my stats drop in the 60% and 70% range.  I recover quickly when placed on my right side but I still have to be on 3-4 liters/minute of oxygen to stay in the low 90% range which is not good.

I'm not coughing up as much congestion as I normally do, probably because my body is just worn out.  I still haven't opened my eyes today which means I am on day 5 of my "wake-up" strike.  I did make some noises when we tried to re-position me tonight on my tummy because I was trying to tell everyone that I only want to be on my right side!  They must have listened to me since that position only lasted a few minutes.  I'm still really swollen including my face, feet, hands and belly.

Mommy and Daddy talked to Dr. Gien again tonight.  We told him about our concerns with the low oxygen levels, the swelling and the issues of laying on my left side.  He said it is hard to tell exactly what is going on without and x-ray and other tests, but it could be fluid in the tissues around my lungs or maybe even some collapsing of my lung that is causing my oxygen to drop when I am on my left side.  He also said my drop in oxygen level is a big concern and gave us a few options to consider if we see that get harder and harder to control over the next few days.

I think for now we will continue to see how I do over the weekend since I am such a tiger girl and you never can tell what I am capable of getting through.  We try and take each day as a new one and never expect what is around the corner because I am known for going down the path least traveled.

I am in bed and snuggled up with my loyal BFF "Oinky".  Good night everyone!

Retro Wednesday

Last night I had a hard first part of the night.  Part of the problem was two BIG poops.  This seemed to make everyone happy since I hadn't pooped since last Friday but it really stressed me out!  My heart rate ranged between 150 and 190 until early morning.

Today was a busy day in the house today.  I had been wondering where my nurse Tiffany had been and she came to take care of me today.  She told me she was sick last week and didn't want to spread any germs to me so she decided to stay home.  It was so nice to hear her voice again today.  Then, this morning I saw my new Hospice nurse Carol again and we visited for a while.

A little bit later Haley (who orders all my supplies) showed up to drop off some bigger nasal cannulas.  After my visit with Dr. Gien yesterday, he noticed that my cannulas were for infants which explained my low oxygen levels.  So now we switched to the pediatric size and that seems to help at times.

Then my afternoon got a little bit crazy.  My heart rate started to soar and my oxygen dropped to the lowest levels we have seen in a while.  I scared Tiffany so much that she called back Carol because my oxygen would not get above 85% for a while.  She tried everything but nothing seemed to work.  Of course, right before Carol arrived I started to recover.  I always do that to Mommy and Daddy too.

Tiffany did notice that I am having trouble laying on my left side where my heart and stomach are.  We will keep an eye on that over the next few days and see if my heart rate goes up and my oxygen drops when I'm on my left side.  It could also be something to do with my left lung.

Since I really haven't opened my eyes again today (day 4 of the super sleepy state), Mommy decided not to take another picture.  Daddy said we should start retro Wednesday where Mommy posts an older picture of me.  Below is a picture just a few minutes after I was born with my Daddy.

Mystery

That is what my Daddy always calls me and it turns out to be true over and over again.  I had a very rough night last night with my nurse Beth.  I got multiple doses of my heavy hitting drugs like versed and morphine just before midnight along with some nebulizer treatments and I was finally able to cough up some thick congestion.  I went through the same episode around 3am and calmed back down around 5am.  I had a fever off and on all night along with low oxygen and a high heart rate.  Daddy talked to Dr. Gien this morning just to give him a report on Tessa's night.

This morning Mommy and Daddy talked to the Dr. again and discussed some of the options since we have been worried about my water retention, fever, increased heart rate, low oxygen, overall sleepiness and labored breathing.  We decided against some of the tests since nothing would give us any definite ideas on exactly how much time I have left with my family.

We did decide to have a special visit with Dr. Gien.  He listened to my heart since we thought I might be having signs of heart failure but he said my heart sounded strong and my lungs still sounded bad.  He was unsure if it is entirely from the pneumonia or maybe from ineffective breathing causing some collapse in my lungs.  My fever could be either from an infection or could be a side effect from my brain damage or a combination of both.  As for the swelling, that may be because I haven't been eating enough, so we are try to increase my milk intake to see if that helps.  Again, I am still a mystery.

So we continue on with our days.  I have yet to really open my eyes in two days probably because my medications have me very sedated, but the alternative is worse.  When I'm "in the throws", as Daddy calls it, it is awful so being able to rest is a much better alternative.  My evening so far has been pretty good.  My heart rate is still high and we started my fever reducing meds to try and prevent a fever tonight as recommended by Dr. G.  Fever always makes things more difficult.

Mommy was able to get some pictures of me today while I was sleeping.  You can see the puffiness around my eyes.  Hopefully that goes away with some food and doesn't get worse.

Thank you Dr. G for our visit today.  For some magical reason I am always on my best behavior when you are around.  I am truly blessed to have you in my life and appreciate all you have done for me.

Swollen

Things have become much harder for me over the past few days.  I wasn't able to open up my eyes all day today because I am so exhausted.  I had a difficult time this morning keeping my heart rate down and my oxygen up and I was struggling to breathe.  A new thing we noticed this morning is my hands, feet and face were very swollen this morning.

While no one can tell us for sure what is going on I appear to be getting sicker.  We spoke for a while with Dr. Gien tonight and he thinks maybe my heart is working harder to keep oxygen in my lungs so it is affecting the rest of my body functions.  It is hard to tell exactly what is going on without going in for tests.  Daddy will talk to the Dr. again tomorrow morning to let him know how my night goes.  

Mommy didn't get a picture of me today which is fine by me because I felt like the paparazzi was here the past week.  

Low O2

I had a rough night with Daddy last night.  We talked to Dr. Gien before bedtime and increased one of my medications and switched my dosing on another.  My oxygen was low and my heart rate was high so Daddy had to keep re-positioning me to see if he could get me to cough up some congestion.  He gave me all the medications in our bag of tricks.

This morning Mommy and I stayed home while Daddy took Nana Shea to the airport.  Thank you for all your help Nana Shea, we will miss you!

I got my NG tube taken out of my tummy and then enjoyed a nice bath with Mommy and didn't cough up as much congestion as I normally do.  I was very sleepy and slept through most of my bath and even my exercises.  I did decide to wake up pretty calm so Mommy decided to take some video.

It was more of the same this afternoon trying to fight a fever, low oxygen and a high heart rate.  I have been able to take a good amount of food today but it is still not as much as I was getting a few weeks ago.  My nurse Heather is here now to take care of me tonight.  Mommy and Daddy are tired so I hope they get a good night sleep tonight.

Auntie C

I had a great night last night snuggling in bed with Mommy.  I only had an hour or so when I was up trying to cough up some congestion. I got an albuterol nebulizer and some CPTs which helped me loosen up my congestion and I fell back asleep.

I stayed asleep most of the morning while Nana Shea watched me so Mommy, Daddy and Brody could go to Brody's soccer practice.  I started to wake up just around noon and had trouble calming back down.  We did a nebulizer treatment again and tried sitting up in my boppy to see if that would help increase my oxygen content.

Then we had a special visitor....Auntie Caryn!

It was so much fun to see her again.  It is great when she visits because she always takes pictures of us.

We visited for a little and then her an Mommy went out while I stayed home with Nana, Daddy and Brody.  My heart rate was up again and I was battling a fever but my eyes were closed.  It stayed like that all afternoon.

Then my respite care provider, Marsha came over so Nana could watch Brody and Mommy and Daddy could go out to dinner with Auntie Caryn, Uncle Cayce and his family.  Marsha brought me a snuggly bear for my birthday.  Thank you Marsha!

 I was a great girl for most of the evening but decided to wake up in repiratory distress just before Mommy and Daddy got home.  After some CPTs and Mommy moving me around I finally coughed up a big glob of congestion but that didn't seem to help.

Then, all of a sudden,  Mommy smelled something stinky and asked Daddy if he "tooted".  Nope, and then she felt the wetness.  Yup, I had another HUGE poop.  After getting cleaned up, the doctor called and we decided to increase a few more drugs.  I did pretty well yesterday with my med changes by we are trying to get me in a much more peaceful state.  We will give it a try tonight and tomorrow and see what happens.

Good night!

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.