New Drug

After lots of discussion, note taking and analyzing we came to the conclusion that my Valium drugs are not working anymore.  We have been talking with my neonatologist, Dr. Gien a lot to try and come up with an alternative.  After weighing all our options, we finally decided on phenobarbital.

I had my loading dose today and have been sleeping ever since.  This is a really good sign so far!  Over the next few weeks, we will wean me off my Valium drugs which over time will help make them more effective for me again.

The next few days will be the test.  I just need to keep my heart rate down and my oxygen levels up.

Long lash lady

My nurse Darlene was here to take care of me last night and I had quite an episode for her!  I was awake and active with seizures when Mommy and Daddy got home from work yesterday.  Mommy gave me Versed which didn't help but I was able to cough up a bunch of congestion and then I fell asleep for a little.  About an hour went by and I woke up again with seizures and irritability so we did some suctioning and then I got some more Versed which didn't seem to help.  Darlene had arrived by then and she gave me an Albuterol Nebulizer which didn't help.  There was lots of suctioning going on and I got another dose of Versed and some Hyocyamine.  When I was still battling congestion, a high heart rate and dips in my oxygen level, Daddy finally said, just let her have some morphine.  That did the trick and I fell fast asleep!

Over the past few days I have been on 'round the clock doses of Tylenol to see if it would help with my high heart rate since the doctor though I might be having some pain.  That doesn't seem to be the case, unless the pain is so bad the only morphine will do the trick.

In any case, Mommy and Daddy are pretty sure my Versed and Valium or no longer working, even though we did another increase in my dosage.  The doctor is worried that if we keep going up on my dosage that I may get that dose that stops my heart.  He said there is usually no warning signs and even though we are careful about titrating up my dose, it is still a risk we are taking every time we increase.

My awake times are just really rough for me and the only time I am ever peaceful is when I am sleeping.  Mommy and Daddy are having another call with Dr. Gien again tonight to discuss the changes in dosages we made this week along with our "Tylenol" experiment.  I am sleeping peacefully on my z-flows now waiting for my night nurse Paula to arrive.  I am getting so long my feet are hanging off the end!  Luckily my new, larger z-flows will be here on Friday.  My wonderful Hospice supply "orderer", Haley, keeps getting me these wonderful neat things to try out!

Check out my beautiful eye lashes!  I may not have much hair on my head, but I got the lashes:-)

Quick

This is going to be a quick post tonight.  Mommy didn't get a chance to help me post last night because Mommy and Daddy were talking with my neonatologist, Dr Gien.  I have had a few rough days with seizures and heart rate spikes that we can't seem to get under control with my meds.  We put a plan together for the next few days to try and figure things out.  We will talk to the doctor again tomorrow night.  After today we think our best option is trying a new drug and weaning off Valium.  We will see what Dr. G thinks.

Cold....

Yes, I think I may be coming down with something again:-(  I have had a runny nose all day and was in bad shape this morning.  I woke up early trying to cough out some congestion and my oxygen levels were very low and my heart rate was through the roof.  Mommy gave me an albuterol nebulizer and that didn't work, then she gave me some Versed and that didn't work, then we hopped in the tub and finally that worked!  There is something about the steam and warm water that just relaxes me.  Mommy and Daddy need to get a big hot tub installed in the back yard so we can spa day every day:-)

I got out of the tub and Brody was helping Mommy get me all lotioned up which, if you know Mommy and her lotions, that took a while!  Brody even brought me Oinky to hold on to and my quilt to keep me warm while we finished getting dressed.  I love my big brother.

The rest of the day we battled my congestion, but so far no fever which is good.  I didn't eat much today so we will need to watch my heart rate tonight and really work on the fluids tomorrow.  I got to spend an hour this afternoon without my NG tube and as usual I loved it and Mommy didn't want to put it back in.  She even stuck her finger in my mouth for the first time in a long time to see if I would suck on it, but it was a no-go.  My brain just can't tell my mouth to suck, so she had to put the tube back in.  It was worth a try.

Daddy's on duty tonight so I plan to be on my best behavior.  I suckered Mommy into letting me sleep in the bed last night and I was a true angel.  We'll see if Daddy falls for my puppy dog eye trick when he tries to put me in my bassinet.  Stay tuned.

Sleepy

I have been very sleepy today.  Daddy got me dressed and set me up in my boppy lounger in the family room and I haven't moved since!

I have taken in a good amount of food and pedialyte today.  My seizures have been bad during my awake time but luckily I haven't been awake much.  I have had a few doses of versed and that has helped keep me calm.  Mommy just gave me another albuterol nebulizer to ease my breathing.  I am starting to wake up now so I hope to stay calm!

Trying to find peace

Mommy really wanted a "as good as she could get" sleep last night so we started to get ready for sleepies around 9pm.  I was passed out on Daddy and we tried to make an easy transfer to the bassinet but I, of course woke up.  I started having really bad seizures so Mommy took me out of my bassinet and I snuggle tight in the "crook" of her arm but even that wasn't bringing my heart rate down.

Against doctors orders, I took some morphine which took the edge off but didn't stop my seizure activity, so they gave me Verse too.  Mommy put me prone, or tummy down in non-medical world speak, on her tummy and after about an hour we were both fast asleep.  I slept like that until Mommy's back (and Daddy's ears since Mommy snores on her back) couldn't take it any more.  Then Daddy helped put me in my bassinet and I only fussed for a minute and fell fast asleep for the rest of the night.  My heart rate and oxygen stayed perfect all night and I didn't even need suctioning.

I was a little angle this morning until my nurse Tiffany transferred me from my bassinet.  My heart rate increased so she decided to give me morphine which didn't help, so she gave me Versed.  That helped a little but my heart rate was still high.  Another dose of Versed did the trick and I finally fell asleep after a few hours of active seizures.

I got a nice bath and a few albuterol treatments and I stayed calm and asleep all afternoon.  I didn't get much food this morning but as soon as I fell asleep this afternoon Tiffany got as much food as possible in me.  I woke up right around dinner time with some really bad seizure activity and my heart rate was through the roof again.  

Daddy gave me Versed which took a while to kick in but I finally fell asleep.  Finnegan was laying at my feet and purring which was so warm and relaxing and really helped me fall asleep.  He is my therapy cat!

It is Daddy's turn to watch me tonight and I will try and be a good girl again.  I just wish I had some awake relaxing times these days.  My seizures are getting worse and my Valium just doesn't seem to be helping.  I know Mommy and Daddy are wanting peaceful awake times for me but I'm not sure I can give that to them.

Active

Yes, I have been very active the last few days but not in a good way.  I have been having lots of seizure activity and tonic movements that are reminding Mommy and Daddy of the times before they knew I was even having seizures (around 2 months).  I am doing lots of arching which looks like I'm trying to look around and lift my head, but it is really just a seizure.

I am also making more noises which Mommy and Daddy do love to hear my voice, but the noises are usually tied to  a seizure.   My increases in Valium and Versed do not seem to be helping me.  I had some tough times over the last two days and Mommy and Daddy are thinking of switching to a different medication to help keep me calm.  The good new is I have been able to keep down more food and I even gained a little weight!  We will see how tomorrow goes.

Finally

I finally had a really good day!!!  I only had a few "Brady's" yesterday evening, as they are called in the medical world where my heart rate drops below normal ranges.  My new dose of valium seems to be helping.

Today my nurse Joy was able to give me almost 16 ounces of milk and pedialyte and I kept it all down.  That is way more food than I have had in a few weeks.  I think I am finally getting back to my old self.  I am still having lots of seizure activity but my breathing sounds a million times better and I am having some awake and calm moments which I also haven't been able to have in the past few weeks.

I am sleeping on Daddy while we wait for my night nurse Darlene to get here.  Hopefully my good day repeats itself tomorrow.

I "Heart" You:-)

Last night was going ok until I decided to have some heart rate problems.  My heart rate dropped really low a few times and then it went down to zero a few times too.  Daddy had to massage my chest to bring me back up.  I was able to recover each time but it definitely scared Mommy and Daddy.  I was in such a deep sleep it was very hard for them to wake me up.  I finally started responding when they got me changed into my pajamas.  Mommy thought it was going to be a touch and go night but I ended up sleeping really well.  I didn't have any heart rate issues for the rest of the night.

Mommy spoke to my neonatologist, Dr. Gien, this morning to discuss my feeding issues, increased seizure activity and heart rate decreases.  He is concerned that I am not eating enough and getting dehydrated.  He said my dehydration can cause an increase in potassium which could be causing my heart to stop beating.  Mommy and Daddy have been trying to get enough fluids in me but my increased seizure activity has made it very difficult since I usually spit up any food I am given when I am awake and having seizures.  Plus, if I only drink pedialyte and can't eat, then I will start to lose weight and fast.

Dr. Gien increased my Valium dose and my Versed dose to help with the seizures but it doesn't seem to be helping yet.  I am awake now and making lots of little noises.  When I first starting making noises a few weeks after I was born, Mommy and Daddy were so happy, that is, until they learned that it was seizure activity.

I got half way through a feeding tonight and Daddy had to quit.  It was just too much for me to handle since I am awake and agitated now.  He may try and give me my first increased dose of Versed to see if it works.  He is just scared of the heart rate episodes that happened last night.

I am 8 months old today!

I can't believe I am 8 months old today...how time flies!  My night last night was pretty rough again until about midnight.  Daddy gave me some morphine which helped to slow my respiratory rate and calm me down.  Once I got all snuggled into bed I fell asleep and was pretty good for most of the night.  I woke up  a little earlier than normal and got all dressed for the day.  My brother Brody came in to say hello and watch me while Mommy got all my medications and food together.

I had a pretty good morning while Daddy and Brody went to the pool.  I seem to really like laying on my tummy again and Mommy was able to get me to eat some food while I slept.  I woke up this afternoon and was having seizure activity with lots of arching and trouble with my secretions so we tried Versed again and it didn't seem to help.  We called to get a higher dose since this first dose was just a guess.  Daddy knew it wouldn't be enough.

My seizure activity lasted so long that my respirations picked up again so we tried morphine and some positions changes and I finally calmed down and fell asleep.  I am now eating some more food with Mommy.  

 

I haven't been eating much lately.  Yesterday I was able to get down maybe 6 ounces of milk and another 3 ounces of pedialyte.  I have been awake and agitated a lot and we have had a hard time keeping my oxygen status up despite the fact that I am on about 4 liters of oxygen.

Last night started out rough since my pulse-ox kept alarming because my oxygen was dropping pretty low.  Mommy was just about to pick me up and snuggle me when I coughed up a big glob of congestion (finally)!  It took me another hour or so to really calm down but I was fast asleep just after midnight.  I was pretty peaceful for a while but then woke up and could not go back to sleep.  Mommy gave me some Versed but I don't think my dose is high enough because it took me another hour or so to fall asleep again.

I hung out with Daddy today so Brody could go with Mommy to see Thomas the train.  I had a rough start to the day but did manage to sleep a little.  I only had about 6 ounces of milk again today and maybe a little more pedialyte than yesterday.  My fever came back this afternoon so I got a cold rag for my head which usually calms me down.

My respite care provider Marsha came this evening so Mommy, Daddy and Brody could go out to dinner.  I wish I could go with them but as you are aware, I don't travel well (or lightly).  I just spit up a bunch of congestion so I think I am finally ready for a little snooze.  I haven't slept much at all today so things are looking good for a restful evening.

Road Trip

I started out the day really sleepy like normal but when my nurse Tiffany tried to give me my first feeding, I ended up spitting the whole feeding up.  She gave me a bath to see if that would calm me down but it didn't seem to help.  I was awake and having lots of seizure activity and just plain agitated so we decided it was best to try and let me calm down before eating again.  Well I didn't calm down until about noon and by then it was too late to feed me because we had to take a car trip to see my neonatologist, Dr. Gien at the Children's Hospital.

I haven't been in the car since my last trip home from the hospital in April and I really wasn't looking forward to it.  My nurse Tiffany came with us to help with all the equipment we had to take with us.  I needed my oxygen, suction machine and my pulse-ox.  I was going to "break the law" and just ride in the car without my car seat since my heart rate spiked so high the last time I rode in my seat.  But Mommy decided to make me try one more time and I didn't like it at first but my heart rate stayed below 200 so we decided to give it a try.

I did my little piggy squeals the whole way to the doctors which luckily was only 15 minutes away.  Tiffany checked my stats during the trip which were ok so we decided to keep me in my seat.

I only waiting a few minutes and then we went in to get weighed and measured.  I was 26 inches tall and weighted 5.94 kg (13.1 lbs) which means I lost a little weight since my last weight check.  I then sat and waited for Dr. Gien.  First Mommy held me for a while and then Daddy....

 

Finally Dr. G came in and we went over all my medications and discussed my illness last few weeks.  Since we were unsure if I had pneumonia or not, Dr. G recommended that we do a quick chest x-ray, so we ran over to radiology and took a few pictures.

The x-ray showed that I probably didn't have pneumonia which is good news.  He thinks I did have a virus which would explain the fever, labored breathing, congestion and heart rates spikes.  I did have some damage in my airway which was probably from the virus, so he prescribed me some prednisone to help reduce swelling and hopefully help make it easier to breath.

Dr. G also thought that my heart rate spikes and extreme difficulty eating are probably due to the progression of my seizures.  He gave me a prescription for Versed to be used as a quick acting medicine to help if my heart rate gets too high when I am having seizures.

Two and a half hours later, we said our goodbye's and heading back to the dreaded car!  I was so tired from he long day and weak from not eating all day that I slept the whole ride home.

I am still sleeping now, but have been having trouble keeping my oxygen up, my heart rate down and my respirations down, so Daddy just gave me some morphine to see if that helps.  So far I am still struggling.  I'm working on taking in some food again now.  So far today, I have only had about 4 ounces of Mommy milk and 2 oz of pedialite.

Snuggled

Today was very similar to yesterday.  I had a hard time with my feedings and have been very agitated and uncomfortable when I am awake.  I am still experiencing spikes and dips with my heart rate which don't seem to make any sense.  At first we though there was something wrong with my pulse-ox, but my nurses have been checking my pulse during these episodes and have noticed that is can be irregular during these times.  This is something we are going to discuss with my neonatologist tomorrow.

I have significant damage to the thalamus in my brain which controls all the signals my brain sends out.  When we first found this out, the doctors told Mommy and Daddy that as my brain matures and things change, the signals that my brain is sending out now may also change.  So signals that let my brain tell my body to control my temperature or to take a breath may start to malfunction.

I took only four feedings today of 60mls each which is well below half of my normal feeding amount.  I don't know if I will be back up to the "normal" amount for a really long time.  We are still trying but my body just isn't ready for all that food yet.  I am still on oxygen and needing a few nebulizers a day to help keep my congestion loose.

After dinner I got to enjoy some good snuggle time with Mommy.  Because I have been so sick the past few weeks, Mommy and Daddy haven't been able to hold me since I didn't like movement and they were constantly having to give medicines, suction me, check my temp, etc...  I even got a big snuggle from my big brother Brody after he enjoyed the last yummy ice cream cone cup cake (yup, you heard that right!), courtesy of Theresa.

Thank you Aunt Kai for the lovely card.  We wish you all lived right around the corner too:)  Please give my cousins Aidan and Hannah a big kiss for me - even though I have never met them, I still think about them all the time.

Another Tough Day

Mommy took a break from posting last night since we had a new night nurse who I loved!  She came to help out last week and again this week and we just heard today that she thought I was so sweet and cuddly that she wants to come back one night a week on a regular basis.  Yay!

Yesterday I slept most of the day, probably because I was worn out from Sunday.  I was able to keep most of my feedings down except for the last one.  Today was the complete opposite.  I was awake almost all day and had a very difficult time again with my feedings.  My nurse was able to give me only a 1/4 of what I normally eat.  I took another steam bath today to see if that would help the congestion, but it only made me cough up congestion...and my entire meal I had just eaten.  My fever hasn't come back in two days now which is good news ;)

Tonight I have a new night nurse named Darlene just like Nana Reed!  She seems very sweet so hopefully she gets used to me quickly and we get along great.  Mommy didn't get a chance to take a picture of me today, so she took a video a few days ago when I was starting to recover from pneumonia that she wants to share.  The only problem is that the video is upside down and she can't figure out how to rotate it....we need my cousin Jason here to help her.  For a better viewing experience, please rotate your computers 180 degrees:-)

Best Dressed!

Feedings have been slow today but I have handled them pretty well.  I have been running a low grade temp all day but have not needed any motrin or tylenol:)  I am still coughing a lot and have been needing oxygen all day.  My oxygen stats have been up and down and so has my liters of O2, ranging from 1.5 to 4.

I got to spend 30 minutes outside today to get some much needed Vitamin D.  I took my portable oxygen tank with me and we all caught some rays.  The only way my brother will let Mommy and Daddy take his picture now is if we pretend to take a picture of his car....I, on the other hand love getting my picture taken!

Mommy's friend Nickie stopped by to drop off more fashionable outfits for me from her daughter Gracie!  She is responsible for lots of my cute summer dresses.  Thank gosh Gracie has such an impeccable sense of style:)

I am going to try and take another small feeding after Mommy gets me all ready to snuggle into bed.

Oinky

Look who I found!  He was hiding in my brothers bed...he is out for Breakfast with daddy and a friend so i sent mommy on a hunt in his room. 

I am just starting my first meal now and am coughing a lot.  Mommy is going to take it slow.

A few steps back....

I was awake most of today having seizures and running a low grade fever.  I had a few saline nebulizers to help break up some of my congestion, but I have had a cough all day.  I have been able to bring up congestion a few times, but most of the time it was an unproductive cough.

I've really struggled with my feedings today.  We started out trying 100 mls but I had a really tough time and it took Daddy twice as long as normal to feed me.  I tried it again a little later and had another battle with my feeding.  Mommy and Daddy have decided to take it really easy with my feedings since they have seemed to set me back a bit.  I am calling it quits with my feedings for the rest of the evening.  I am still on my oxygen and pulse-ox full time with lots and lots of suctioning.

So now, I am snuggling with Mr. Banana's again.  He is so snuggly and soft.  I am beginning to forget about Oinky since he is nowhere in sight...

Better

I had a good day today with my nurse Ines.  I spent most of the day sleeping but was strong enough to cough up a bunch of congestion after a few of my nebulizer treatments.  Mommy and Daddy met with the Chaplain Elizabeth this morning and met a new night nurse Darlene this afternoon.  She is going to help out one night a week which will be Tuesday next week:)

I got a nice steam bath again this afternoon with Daddy and that really helped me get some bad congestion out.  I still have a temperature that won't go away but we are controlling it with meds. 

I have a new night nurse Alisha tonight to help out while I am still not feeling well.  She will be back on Monday night and may work one night a week regularly which is good news.  We tried increasing my feedings again today but my congestion got so bad that we decided to stick with just Mommy milk this afternoon.  That means more work for Mommy, so she has been trying to keep up:) 

Time to get some zzz's.  Goodnight!

On our own

I am finally all settled in my bassinet for sleepies.  Daddy gave me my saline nebulizer and I am breathing a bit better than before.  No nurse is here to help so that means Mommy is going to be on high alert!  I had a bit of a fever so Mommy just gave me Morin again.  Goodnight, sleep tight.

Ups and Downs

I had a relatively quiet night with my nurse Paula compared to the last few nights.  I got a few saline nebulizer treatments to help keep me clear and was able to couch out some mucus on my own.  I only needed morphine for my breathing once during the night and one dose of motrin took care of my fever.

My nurse Tiffany was back again this morning and it was a much calmer morning compared to yesterday.  We started up my new humidifier to help keep things moist since the oxygen has a tendency to dry me out.  We've been really careful about increasing my feedings back up slowly, so today I took in about 560 mls as opposed to half that on Tuesday and very little on Monday.  Things seem to be moving in the right direction!  Speaking of moving in the right direction, I even pooped today which is the first time in about 5 days!!  I have also opened my eyes much more today compared to yesterday where I don't think Mommy and Daddy saw my eyes once:)

I still ran a little temperature today and my oxygen levels have been up and down.  This evening, my heart rate was dropping really low and I have been having more seizure activity which is typically of this time of night.

When I did wake up this evening, I noticed someone took my Oinky and replaced it with Mr. Bananas.  While he is soft and cuddly, I miss my Oinky.  I asked Brody but he said he didn't do it...not sure I believe him.

Cautiously Optimistic

I was still battling a fever this morning and my heart rate was still pretty high.  I was able to take in some more milk today which helped to hydrate me and loosen up some of my congestion.  Tiffany kept up my nebulizer saline treatments and I was getting morphine every hour or so to keep my respiratory rate down below 50/minute.  After about noon, I fell into a deep sleep and my stridor breathing seemed to quiet down.  At 2pm Tiffany and Mommy gave me a "steam" bath in the bathroom with the shower running to try and help break up my congestion.  I think the bath put me in a much deeper sleep and I couldn't even open my eyes!

I was still so worn out that I didn't even wake up when I got all lotioned up (and we all know how much lotion Mommy puts on me:-)) and dressed.  My cheek is still a little red from my NG tube tape....hopefully that is gone in a day or two after some of my cure-all calendula salve.

I continued my nap-time on the couch and Daddy was so worn out from the past few days that even he joined me, and I even let him use my favorite Boppy.

I didn't need any more morphine or tylenol/motrin after about 1pm today, but I am still sound asleep with only slightly labored breathing.  I woke up with some seizures around 6pm while Mommy was feeding me.  I think that was my way of telling her that I had enough food for the day  My night nurse Paula is here tonight to take care of me and she will try and give me one more feeding after midnight.

Mommy and Daddy are trying to remain positive that I am on the uphill climb out of my sickness, but there have been so many ups and downs the last few days that it is hard to believe it.  Fingers crossed.

Thank you to all those who have called, posted, emailed and texted!  Even if Mommy and Daddy didn't get a chance to respond, please know we have received all the well wishes.  We love and thank you all.

Snuggling

I struggled last night with keeping my heart rate down but I am resting with my nurse Tiffany now and getting some good snuggle time with Oinky.

Still Struggling

My nurse Tiffany left just after midnight last night and I had just spit up a big glob of mucus, so I started the night off pretty good with Daddy.  That didn't last long and then I needed my medications, temperature taken and lots of suctioning so it was another sleepless night.  I got a nebulizer treatment early this morning because I was so dry and suctioning was only making things worse.  That really loosened up some pretty thick mucus and then I had trouble with that and was having a rough time keeping my oxygen stats up.

My nurse Joy came again this morning and we spent most of the morning trying to clear all the mucus that built up over the night.  My hospice nurse Lynda also stopped by and we did some more nebulizer treatments and position changes and still no relief.  I eventually took a hot bath with Mommy and that finally cleared me up a little and we were able to suction a bunch of congestion out so I felt and sounded better.

It didn't last long, and the really loud stridor and mucus were back and so was my low oxygen levels and high heart rate (and fever).  Lots of suctioning, nebulizer treatments and position changes later, I was finally able to fall asleep but still sound pretty awful.

Now I have another nurse Carol here to take care of me tonight so Mommy and Daddy can get some sleep.  It has been a long few days and they are really tired from crying, worrying and not sleeping.  I will miss them but Carol seems very nice and has lots of grandchildren so I am excited to hear all about them tonight.

Sleepies

I am all snuggled into bed now with Mommy and Daddy.  Daddy is in charge so I will try and be a good girl.  My nurse Tiffany was able to feed me a little more food before she left which gave me more strength to cough up a bunch of mucus.  I am being pretty loud with my breathing but my eyes are closed so hopefully I will quiet down soon.  Goodnight.

Fighting

Mommy had a tough night with me last night.  I was having such a hard time falling asleep and she was giving me morphine every hour or two to try and get me to stop the stridor and fall asleep.  I finally slept for an hour or two but was up again a bit later.  I cuddled up in bed with Mommy and Daddy and stayed there until my nurse Joy arrived this morning.

The morning didn't start out too great since I was battling to breathe and had a high temperature.  We were finally able to get everything under control around noon and I was able to fall asleep.  I have been asleep every since and nice and relaxed.  My stats were pretty good most of the day, but tonight my heart rate keeps dropping pretty low.  Sometimes that happens when I am in a very deep sleep, so we are not sure if that is a problem yet.

My nurse Tiffany is here now until midnight to let Mommy and Daddy rest before the night time shift begins again.  Thank you to everyone who has sent well wishes and thoughts.  I am trying to fight through this but it is not easy.

Fighter

It has been a very rough few days for me.  Yesterday started out ok, but after my first feeding, we started to notice something was very different.  Mommy decided to run to the store quickly with Brody to pick up a few things and Daddy gave her a call to come home quick.  My breathing became very labored, known as stridor and I was still running a high fever and needing oxygen.

Daddy gave me a dose of morphine to help the stridor and a large dose of hyocyamine to help with my secretions which needed to be suctioned every 10 minutes or so.  Mommy and Brody then got home and a few minutes later the Hospice nurse arrived.  Snuggling with Daddy made me feel better but I still sounded awful like I was breathing in fluid.  The nurse said it sounds like I have lots of fluid in my lungs which means that I probably have pneumonia.  That made Mommy and Daddy very sad.

After another dose of morphine, we told the nurse she could leave because I started to sound a little better and had fallen asleep.  That was short lived and an hour or so later I woke up again with my the same strider and it seemed liked no drug was helping me.  Mommy and Daddy thought they might have to say goodbye to me at any moment.  Brody got to go spend the night at his friend Ajax's house so Mommy and Daddy could concentrate on taking care of me.

Another Hospice nurse came over to check on me and we tried a few things to help alleviate the stridor.  She did tell Mommy and Daddy that they have lots of older patients with pneumonia who are on morphine and breathing just like me who can tell the nurses that they are not in any pain.  That made Mommy and Daddy feel better to know that even though my breathing sounds awful, that I am not in any pain.

I had lots of ups and downs last night, but overall I am still holding my oxygen levels (with help from my oxygen concentrator) and my heart rate is ok with some spikes and dips here and there.  It was a very long night and none of us slept much at all.  My nurse Joy is here today and is going to stay late to help and another nurse is coming tonight.

Fever and...Oxygen

I have been very, very sleepy today and still fighting a fever.  Mommy and Daddy are trying to keep it down with medicine, but it keeps creeping up.  I have had to be on oxygen all day to keep my stats up.  The good news is that I have kept all my meals down, but probably because I am a bit dehydrated from the fever.  I hope tonight is better than last night since it took me a long time to fall asleep and I was up a lot throughout the night.  Mommy and Daddy have been debating whether or not to call the Hopsice nurse since it is a holiday weekend, but we may have to tomorrow if I don't start waking up a little more.

You give me...Fever

I slept pretty good after my big spit up last night but Daddy did have to put me on oxygen because I just couldn't keep my oxygen up after multiple times trying to suction me.  I woke up this morning with a fever, but some Tylenol did the trick and it went away.

It was a busy day in the house this morning.  After my bath, my hospice Nurse Lynda stopped by to check on me and get me weighed.  I was 6.06kg (13.3lbs) which means I lost a little weight.  We were not surprised since I have had such a hard time keeping food down the past few days.  My occupational and physical therapists stopped by today for a visit too.  They helped us work on positions for me in my new Z-flo positioners to keep me from getting sore or stiff.

I finally got to rest after all the excitement and took a great nap for my nurse Ines!  Mommy was even able to sneak in a nice nap.  I took most of my last feeding (-20mls) which was great, but I woke up around 7:30 with a high fever of 102 and a very high heart rate.....I just got some more Tylenol and some snuggle time with Mommy and Daddy.

I am feeling a little better now and my heart rate is slowly going back down.  I got a surprise Skype call from Nana Reed and her friend Marie which was fun.  I was pretty sleepy so I couldn't open my eyes, but I always love to hear my Nana's voice...

Not good

After Mommy and Daddy passed me off last night to Paula, I spit up.  It had been a while since I had eaten but I must have not been digesting my last meal because I spit up a good amount.  I needed lots of suctioning too and finally fell asleep early this morning.

I didn't really have a great day with my day nurse Tiffany either.  I was awake a lot and having lots of seizures.  While I am always having abnormal brain activity and seizures, they used to be internal and were not too obvious to most people.  A few months ago I started having many more outward seizures that was mostly arm and head movements.  Now I am showing more lower limb movements and they are much worse at the end of the day.

I started my last feeding at 6pm and Mommy had to stop within a few minutes because I had a big spit up.  We waited for me to calm down and started again and I spit up again so we decided to stop.  I got it all over Daddy again!!!  Mommy took this picture just after and it really explains it all....not good.