DAY 4 FRIDAY JAN 7TH, 2011
Today was not a busy day......the only big event was her head was unwrapped
and we got to see the incision, which looked very good. The doctors were happy with how
it looked. They then re-wrapped it.....Alannah told jokes throughout the procedure!
The exciting news is that today was the first day that we had our daughter back...and what I
mean by that is she hasn't been fighting a fever all day and acting lethargic. She actually
woke up and was our Alannah, which made the day fantastic. We played games and talked, and
she cracked jokes and used her usual bossy tone.....it's funny because there are times as a
parent that you wish your children would calm down and be quiet....and when Alannnah was quiet
these past couple of days, I hated every day I ever wished that. Today was the day I realized
it's so much better when she's loud and bossy.
Zizi Mary came to visit today, and she came bearing gifts from Alannah's classmates and
paper snowflakes that her older sister Bella's classmates made for her hospital room. (see pics)
Thanks to all the kids at St.Maurice and Beulah Christian Preschool who made and/or bought
things for Alannah's hospital stay, we really appreciate it. She actually felt well enough
today to play with some games and baby dolls, so all the things that were sent will get good use.
Zizi Mary played Chutes and ladders with Alannah. Guess who made the rules for that game today?
and then Guess who won? Yep, Alannah. Grandma and Grandpa came and brought lunch again....Alannah
reminded Grandpa that she was his princess and then she asked him if Grandma could be his princess
too...I won't tell you what grandpa's answer was!
When the docs were in talking to Alannah today, she showed off her karate moves, which she had been
working on through the day when she was watching Disney's "Karate Kid" movie. They were very
impressed, and she almost karate chopped her cereal bowl right off her table!
Aunt Mary and Uncle Ben brought dinner this evening and Alannah ordered Aunt Mary to karate chop
the nurse when she came in for a blood draw....yes, Alannah was serious. They also brought a Dora
balloon, which has been added to the collection. It's very festive in Alannah's room and all the
nurses love it! (SEE PICS for room decorations) Aunt Denise and Uncle Rick came again tonight....and Aunt Denise played games and water-painted with Alannah. Always good times when paint is involved!
More good news: Her temp stayed down today, which everyone is very happy about and her sodium levels
have been staying in a pretty good range, so those 2 things have settled down.
And everyone is still waiting for the seizures to happen, so they can finish gathering data for the
"mapping"....however, none thus far. Doctors eliminated seizure meds today, so we're all crossing
our fingers that we'll gather the data we need. I can't tell you how strange it is to WANT seizures
to happen....but it will make the information gathering for the surgery more successful.
All in all, things are going well and Alannah is feeling more like herself, so we're happy.
Lots of pics today.....
Saturday, January 8, 2011
Friday, January 7, 2011
THURSDAY - JAN 6, 2011
DAY 3 THURSDAY JAN 6TH, 2011
ALANNAH has had a very exciting day....she urinated on her own (they removed the
foley catheter last evening), she had her first BM....who knew that could bring
on such excitement! She had a bed bath, the first time she's been washed since
Monday, and feels like a whole new girl! She also sat up in a chair for an hour,
which everyone says is a pretty long time for this stage in the process.
She is still running a low grade fever, so they are watching her closely, and her
sodium has been dipping down a little bit, which is also being closely monitored.
They say that both of these things are probably just post op norms, not eating
and drinking like usual, so things can be a little off. We'll keep you posted.
Grandma and grandpa Porco stopped over for lunch today....of course, they brought
the lunch. They also brought snowflake decorations that Alannah's big sister,
Bella, made. We also hung up some pictures and decorated with balloons and some
animals to make the hospital room more homey. All of the doctors and nurses have
been so focused, informative and nice, which makes everything so much easier to
handle.
They are now waiting for the seizures to begin, since they lowered the seizure
meds, so they can "map" out the focal points from which the seizure activity is
coming from.
Alannah has been catching up on some movie time,since she is pretty much tethered to
the bed. She is not able to walk around, except around the bed where her cords
will reach. She doesn't really feel like doing anything anyway, so she's not
missing out on anything yet. Children's hospital has on demand movie selections
for free - nice feature! We also brought her some activities to do, but she
really hasn't felt up to that yet.
Alannah's eye has also gotten much better. YOU'LL be able to tell in today's pics
that she can actually open her eye today, which she was very happy about. She started
to act a little more like herself this evening...she coerced her nurse into sitting with
her and coloring ( refer to pics) and then proceeded to tell her where to color and what
color to make it and how to hold the crayon and when she could move on to another part
of the picture and how light or dark to make it.....essentially bossed every aspect
of the job.....which I was delighted to see her do, because it was so "her". Marilyn,
the nurse, deserves kudos for actually following every direction very carefully
and for apologizing when accidentally coloring outside the lines...very funny lady.
Which leads me to my next comment....every nurse and doctor that Alannah has come into
contact with has been so attentive and kind and funny....any they really go out of their
way to make Alannah and us very comfortable throughout this process..it makes all the
difference. Thanks.
Eric and I are actually still sane, which, when I think about it, I realize it's pretty
much a miracle that I haven't lost my mind yet. It's very hard to think about what
has been done under all the bandages wrapped around her pretty little face, and when I
do, I am in awe. If someone had told me that Eric and I would be calmly picking up a
bag of wires that are attached to Alannah's brain, and moving it around when Alannah
needs to move, I would have said "yeah right". But my mama once told me, when things happen
and your kid needs you, you have the strength to do anything. God always
provides the strength you need. Amen to that.
ALANNAH has had a very exciting day....she urinated on her own (they removed the
foley catheter last evening), she had her first BM....who knew that could bring
on such excitement! She had a bed bath, the first time she's been washed since
Monday, and feels like a whole new girl! She also sat up in a chair for an hour,
which everyone says is a pretty long time for this stage in the process.
She is still running a low grade fever, so they are watching her closely, and her
sodium has been dipping down a little bit, which is also being closely monitored.
They say that both of these things are probably just post op norms, not eating
and drinking like usual, so things can be a little off. We'll keep you posted.
Grandma and grandpa Porco stopped over for lunch today....of course, they brought
the lunch. They also brought snowflake decorations that Alannah's big sister,
Bella, made. We also hung up some pictures and decorated with balloons and some
animals to make the hospital room more homey. All of the doctors and nurses have
been so focused, informative and nice, which makes everything so much easier to
handle.
They are now waiting for the seizures to begin, since they lowered the seizure
meds, so they can "map" out the focal points from which the seizure activity is
coming from.
Alannah has been catching up on some movie time,since she is pretty much tethered to
the bed. She is not able to walk around, except around the bed where her cords
will reach. She doesn't really feel like doing anything anyway, so she's not
missing out on anything yet. Children's hospital has on demand movie selections
for free - nice feature! We also brought her some activities to do, but she
really hasn't felt up to that yet.
Alannah's eye has also gotten much better. YOU'LL be able to tell in today's pics
that she can actually open her eye today, which she was very happy about. She started
to act a little more like herself this evening...she coerced her nurse into sitting with
her and coloring ( refer to pics) and then proceeded to tell her where to color and what
color to make it and how to hold the crayon and when she could move on to another part
of the picture and how light or dark to make it.....essentially bossed every aspect
of the job.....which I was delighted to see her do, because it was so "her". Marilyn,
the nurse, deserves kudos for actually following every direction very carefully
and for apologizing when accidentally coloring outside the lines...very funny lady.
Which leads me to my next comment....every nurse and doctor that Alannah has come into
contact with has been so attentive and kind and funny....any they really go out of their
way to make Alannah and us very comfortable throughout this process..it makes all the
difference. Thanks.
Eric and I are actually still sane, which, when I think about it, I realize it's pretty
much a miracle that I haven't lost my mind yet. It's very hard to think about what
has been done under all the bandages wrapped around her pretty little face, and when I
do, I am in awe. If someone had told me that Eric and I would be calmly picking up a
bag of wires that are attached to Alannah's brain, and moving it around when Alannah
needs to move, I would have said "yeah right". But my mama once told me, when things happen
and your kid needs you, you have the strength to do anything. God always
provides the strength you need. Amen to that.
 |
| "My eye feels much better - no more Rocky jokes, Dad!" |
 |
| The finished product |
Thursday, January 6, 2011
WEDNESDAY - JAN 5TH
Day two post-surgery in the ICU was pretty slow in the morning and most of the
afternoon. Alannah was waiting to get her appointment to go to IR (interventional
radiation?) where they put in the PICC line with some assistance from some fancy
equipment to help guide the PICC line into place. She was also waiting to have a
CT scan per the neurosurgeons to make sure the grids were in the proper places.
There were a couple of visitors to the ICU today. Zizi Mary came bearing a
Minnie Mouse balloon that was bigger than Alannah and chatted with Alannah for a
while. Alannah also had some visitors from within the hospital that she has
gotten to know very well. Candace, Crystal and Casey ( from the out patient
lab that Alannah frequented over the past couple of months for blood work to
help monitor her sodium levels and electrolytes ) also stopped by with balloons
and stuffed animals.
Alannah was still running a low grade fever today, which is not uncommon after
surgery. So, we are still giving her Tylenol to help try to keep the fever
under control. Alannah is usually very good with taking her medicines but she
has been a little reluctant and puts up a strong fight but in the end knows
that the medicine is needed and takes it. She is still not allowed to have food
or water yet because the PICC line is not installed. She is still getting small
amounts of water from the sponge on a stick. Alannah gets frustrated with Mom
and Dad sometimes and gives us a thumbs down sign when she isn't happy with one
of us. Typically, the one who doesn't get the thumbs down sign get the coveted
thumbs up sign. Even though her ICU nurse caused her a little pain here and
there with her IVs she always got the thumbs up sign. (See the attached pictures
from today for the thumbs up and down signs)
From the attached pictures for today you can see that Alannah's right eye looks
like she went a couple of rounds with Rocky Balboa. Her right eye has swollen
completely shut. This is due to the grids being placed on her brain which caused
some fluid around the brain to be displaced. The fluid takes the path of least
resistance and the skin around the eye happens to be looser and therefore causes the
eye to swell shut. This event was totally expected and the doctor told us it was
going to happen and the swelling will subside in a couple of days.
Alannah finally got an appointment for the PICC line for 2pm BUT we didn't
actually arrive at IR until about 4pm due to backups. Before leaving the ICU,
the nurse removed the second of three IVs that Alannah got during the day of the
surgery. This made Alannah very happy! The PICC line was installed in about an
hour and Alannah did a super job according to the folks in the department who
were involved in getting the PICC line installed. She was escorted to IR and the
CT scan by her ICU nurse whom she liked very well. After the CT scan was
completed, Alannah was then admitted to the EMU (Epilepsy Monitoring Unit) floor
around 5:30pm.
Once on the EMU floor, Alannah's neurologist came in and chatted with Mom and Dad
about a couple of items. Some of them being the removal of the last IV in
her hand if the PICC line worked OK, the removal of the urine catheter bag and
getting Alannah some real food that she has been asking for since last night.
The EMU floor nurses got her all hooked back up to the monitoring systems and
asked her what she wanted to eat and she said "pancakes with butter and water."
She also had the urine catheter bag and the final IV from the surgery removed.
Can you say HAPPY GIRL! That definately got a thumbs up sign!
In the EMU, the grids that were placed during Alannah's surgery are plugged into
seizure monitoring equipment. They are weaning Alannah off of the current seizure
medication so that they can see seizure activity with these grids and "map" exact
location(s) of any focal points causing the seizure activity, which they will then,
hopefully, be able to completely remove during the second surgery next week.
Also in the EMU room, Alannah is constantly being video recorded so that the
nurses can see her at all times, and so that they can see the seizure activity when
it is happening. They can also hear everything going on in the room, which means
that mom and dad have to be on their best behavior at all times! Good luck with that!
Hopefully, they can mute the sound during playback!
Alannah had a couple of visitors late in the evening, Aunt Denise, Uncle Rick and
Zizi Frank showed up and stayed for a little bit. There was lively discussion among the adults,
unfortunately for the nurses monitoring the video recording! Alannah was very tired so she
fell asleep while they were here, but got to say good-byes because she was awakened
by the nurse to get vitals around the time they were getting ready to leave.
She is still refusing to take the morphine for pain. She was given two doses of
morphine when the PICC line was installed but that wasn't her decision. She has
only had 3 doses of the morphine since 6pm the day of the surgery. She is
one TOUGH cookie!
Alannah is resting and sleeping a lot better than she did yesterday or even from
this morning. Along with this better resting/sleeping and ALL of your positive
thoughts and prayers our little pumpkin is doing GREAT! Thank you again for ALL
that have kept and continue to keep Alannah in your thoughts and prayers!
afternoon. Alannah was waiting to get her appointment to go to IR (interventional
radiation?) where they put in the PICC line with some assistance from some fancy
equipment to help guide the PICC line into place. She was also waiting to have a
CT scan per the neurosurgeons to make sure the grids were in the proper places.
There were a couple of visitors to the ICU today. Zizi Mary came bearing a
Minnie Mouse balloon that was bigger than Alannah and chatted with Alannah for a
while. Alannah also had some visitors from within the hospital that she has
gotten to know very well. Candace, Crystal and Casey ( from the out patient
lab that Alannah frequented over the past couple of months for blood work to
help monitor her sodium levels and electrolytes ) also stopped by with balloons
and stuffed animals.
Alannah was still running a low grade fever today, which is not uncommon after
surgery. So, we are still giving her Tylenol to help try to keep the fever
under control. Alannah is usually very good with taking her medicines but she
has been a little reluctant and puts up a strong fight but in the end knows
that the medicine is needed and takes it. She is still not allowed to have food
or water yet because the PICC line is not installed. She is still getting small
amounts of water from the sponge on a stick. Alannah gets frustrated with Mom
and Dad sometimes and gives us a thumbs down sign when she isn't happy with one
of us. Typically, the one who doesn't get the thumbs down sign get the coveted
thumbs up sign. Even though her ICU nurse caused her a little pain here and
there with her IVs she always got the thumbs up sign. (See the attached pictures
from today for the thumbs up and down signs)
From the attached pictures for today you can see that Alannah's right eye looks
like she went a couple of rounds with Rocky Balboa. Her right eye has swollen
completely shut. This is due to the grids being placed on her brain which caused
some fluid around the brain to be displaced. The fluid takes the path of least
resistance and the skin around the eye happens to be looser and therefore causes the
eye to swell shut. This event was totally expected and the doctor told us it was
going to happen and the swelling will subside in a couple of days.
Alannah finally got an appointment for the PICC line for 2pm BUT we didn't
actually arrive at IR until about 4pm due to backups. Before leaving the ICU,
the nurse removed the second of three IVs that Alannah got during the day of the
surgery. This made Alannah very happy! The PICC line was installed in about an
hour and Alannah did a super job according to the folks in the department who
were involved in getting the PICC line installed. She was escorted to IR and the
CT scan by her ICU nurse whom she liked very well. After the CT scan was
completed, Alannah was then admitted to the EMU (Epilepsy Monitoring Unit) floor
around 5:30pm.
Once on the EMU floor, Alannah's neurologist came in and chatted with Mom and Dad
about a couple of items. Some of them being the removal of the last IV in
her hand if the PICC line worked OK, the removal of the urine catheter bag and
getting Alannah some real food that she has been asking for since last night.
The EMU floor nurses got her all hooked back up to the monitoring systems and
asked her what she wanted to eat and she said "pancakes with butter and water."
She also had the urine catheter bag and the final IV from the surgery removed.
Can you say HAPPY GIRL! That definately got a thumbs up sign!
In the EMU, the grids that were placed during Alannah's surgery are plugged into
seizure monitoring equipment. They are weaning Alannah off of the current seizure
medication so that they can see seizure activity with these grids and "map" exact
location(s) of any focal points causing the seizure activity, which they will then,
hopefully, be able to completely remove during the second surgery next week.
Also in the EMU room, Alannah is constantly being video recorded so that the
nurses can see her at all times, and so that they can see the seizure activity when
it is happening. They can also hear everything going on in the room, which means
that mom and dad have to be on their best behavior at all times! Good luck with that!
Hopefully, they can mute the sound during playback!
Alannah had a couple of visitors late in the evening, Aunt Denise, Uncle Rick and
Zizi Frank showed up and stayed for a little bit. There was lively discussion among the adults,
unfortunately for the nurses monitoring the video recording! Alannah was very tired so she
fell asleep while they were here, but got to say good-byes because she was awakened
by the nurse to get vitals around the time they were getting ready to leave.
She is still refusing to take the morphine for pain. She was given two doses of
morphine when the PICC line was installed but that wasn't her decision. She has
only had 3 doses of the morphine since 6pm the day of the surgery. She is
one TOUGH cookie!
Alannah is resting and sleeping a lot better than she did yesterday or even from
this morning. Along with this better resting/sleeping and ALL of your positive
thoughts and prayers our little pumpkin is doing GREAT! Thank you again for ALL
that have kept and continue to keep Alannah in your thoughts and prayers!
 |
| THUMBS DOWN FOR PAINFUL I.V. |
 |
| THUMBS UP FOR NURSE SUNNY FROM PICU |
Wednesday, January 5, 2011
TUESDAY January 4, 2011
PRE-OP PICTURES - OUR BRAVE LITTLE GIRL
WITH HER NEW PRE-SURGERY HAIRCUT
Alannah and her entourage (Mom, Dad, Grandma & Grandma Porco, Zia Marianicola and Compare Chris - joined later by Comare Teresa, Grandma Doris and Aunt Denise) arrived at
Children's Hospital of Pittsburgh bright and early at 6am. Shortly after handing out name badges to everyone she was called back to get some pre-surgery vitals and get on her very stylish hospital gown. Alannah makes even a hospital gown look good!Children's of Pittsburgh allows one parent to escort their child into the operating rooom and
stay with them until they are asleep. Dad got the nod and rocked some WAY TOO SMALL hospital attire, a hair net and "peek-a-boo" mask. (Good thing Dad is the camera man, so no pix of this will ever hit the internet!) At around 8am we headed for the operating room with everyone in tow. Everyone except Alannah and Dad went to the family waiting room after giving Alannah hugs and kisses.
Before Alannah takes her naps or goes to sleep at night, she likes to sing the Oscar Mayer Bologna song twice and she does the spelling in the song. She claims that singing this song keeps her from having bad dreams. So, Alannah and Dad broke out in song in the middle of the operating room, however
Alannah fell asleep (from the initial anesthesia) before the song was over but Dad finished the song for her.
Dr. Holder (Alannah's neurologist) stopped by the family waiting room and went over the plans for the surgery. At about 9:20am, all the prep work was done and the surgery began. Around the noon timeframe Dr. Holder came back to the family waiting room and said that everything went well and the grid is in place and the surgeon was closing up. About 2 hours later the surgeon came out and went over the surgery
with the family. He said she did great and did need a small blood transfusion to help keep her hemoglobin numbers up. This number was 10 at the start of the surgery and had dropped to 7 during the surgery, so the surgeon and the anesthesiologist agreed to give her a transfusion to bump the numbers up. In addition, Alannah's sodium levels hovered around 140. The range we are looking for is 133-145.
Alannah was transferred up to the ICU post-op (this is standard procedure) so that she can be monitored for one night before going to the Epilepsy Monitoring Unit. So the entourage headed up one floor to the ICU family waiting area. After we were allowed to come back to her room to see her in the ICU, Dr. Holder said she was talking up a storm, but it was a little hard to understand her because she was still a little drowsy from the anesthesia. She was complaining a little about the oxygen mask bothering her face.
One by one, the family members present made a trip back to see Alannah. In the ICU, you are only allowed to have two people in the room. So Mom stayed with Alannah as family members came back to see her, but before Compare Chris got a chance to come back to see her, the IV team was going to put in a PICC line to use for the rest of the stay for administering medications and pulling blood for tests. After several attempts they were not able to get the PICC line in. They are going to try tomorrow with a dye so they can
see where the line is getting hung up and get it installed. Alannah is not allowed to have any fluids by mouth until the PICC line gets installed, so she has been getting some moisture in her mouth via a small sponge on a stick that gets dipped in cold water.
When Compare Chris and Dad came back after the attempts to install the PICC line, the Neurology team was in the process of hooking up the wires from the grid to the computer. The banadages from the surgery were getting bunched up and making it hard to get the cables routed correctly, so they called for someone to come and re-wrap Alannah's head. Compare Chris gets a little queasy at the site of blood,
so he said his I Love you and good-bye's to Alannah and exited the room.
Post-surgery, Alannah's sodium level has been holding steady at 137, but she has been running a low-grade fever for which she is getting Tylenol. To help manage the pain, she is getting morphine BUT she hasn't had any since 6pm and it is now 12:50am. She was bothered more by the IV that was in her foot ( and so it was removed around 8pm ) and the blood pressure pressure cuff that is on her leg than the surgery site. The nurse keeps asking Alannah if anything hurts and if she wants medicine and she tells her no medicine. What a trooper!
Thank you to everyone who has been keeping Alannah in their thoughts and prayers!
POST-OP PICTURE
 |
| "HOW DO YOU LIKE MY HAT?" |
Monday, January 3, 2011
PRE-OP PROCEDURES BEGIN
Yesterday, Jan 2nd, 2011 - Alannah had her pre-op MRI.
Usually for kids her age, they provide you with "movie goggles" - goggles you can wear during the MRI in which you can watch a movie. This distracts you from the nerve racking noise of an MRI and helps to keep the kids busy so they don't fidget around during the MRI. The other option, for kids who are too young to watch the movies, is sedation. Well, Alannah has done 2 MRIs already with the movie goggles so we had no worries that she wouldn't be able to do it. So we took our Scooby Doo DVD and off we went.
Unfortunately, we found out when we arrived, that the movie goggles are broken and have been for 3 weeks....to which I thought ( but did not say ) "what the heck are you waiting for!!! get them fixed!"
But, true to Alannah's form, she walked in there and held still in an MRI machine for over an hour....something that I myself have had difficulty doing. She continues to amaze us, and the employees at children's hospital, at every turn....that's our trooper.
Usually for kids her age, they provide you with "movie goggles" - goggles you can wear during the MRI in which you can watch a movie. This distracts you from the nerve racking noise of an MRI and helps to keep the kids busy so they don't fidget around during the MRI. The other option, for kids who are too young to watch the movies, is sedation. Well, Alannah has done 2 MRIs already with the movie goggles so we had no worries that she wouldn't be able to do it. So we took our Scooby Doo DVD and off we went.
Unfortunately, we found out when we arrived, that the movie goggles are broken and have been for 3 weeks....to which I thought ( but did not say ) "what the heck are you waiting for!!! get them fixed!"
But, true to Alannah's form, she walked in there and held still in an MRI machine for over an hour....something that I myself have had difficulty doing. She continues to amaze us, and the employees at children's hospital, at every turn....that's our trooper.
Thursday, December 23, 2010
Friday, December 10, 2010
Update on surgery date
Alannah's surgery has been postponed until January 2011. The doctors re-scheduled due to operating room issues. Will keep everyone posted.
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