Thursday, April 30, 2015

Getting closer to going home!

Sorry I didn't post last night.  I was so exhausted by the time that Abby went to sleep that I fell asleep too!  

Abby has had a busy 2 days.  Since she is no long tied to an iv pole, she's enjoying activities around the hospital!  She got to meet Mike Berenstain, the author of The Berenstain Bears. 

 He wrote a new book about visiting the hospital based on what he has seen at CHOP.  





The kids all got a book, and then he demonstrated how he draws the bears.  

Afterwards, Abby got to keep the drawings that he made!  They are pretty cool, one-of-a-kind souvenirs!  

We also visited The Seashore Garden, which is a really cool rooftop garden with lots of toys.  Unfortunately, there was a little boy there who was a little rough, so I spent most of my time being Abby's bodyguard.  But she still managed to have fun, even with Momma hovering!


We even met another therapy dog on our way to the garden.  This makes #5 this stay! :)


Today, she got to go to a princess ball where they had crafts and a photo booth with lots of princess decorations.  




She has been cleared by OT and PT, and her repeat measurements of her chest wall show that she's getting more room.  

We had X-rays and a ct scan today and are hoping to get the results tomorrow.  I've found a pediatric therapy center in Edgewater that will do her PT.  I spoke to the therapist myself and she seemed very willing to learn about the veptr to help Abby.  I called several therapy centers who were reluctant to take her before I found this one, so I'm happy I didn't have to go all the way to Baltimore!

The best news is that Abby slept without cpap last night!  If she does it tonight, she won't need to use cpap at home.  Our home company brought it today and trained me on it, just to be safe.  We will keep it in our home at least for a while just in case she needs it.  We are hopeful that she will do well again tonight so that we can keep the machine in the closet at home. :)

Our plan is to go home tomorrow.  Special thanks to my brother in law for coming to get us, since Matt is knee deep in church yard sale stuff!  My parents have been here the last few days and have been so helpful in entertaining Abby while I made phone calls to therapists, got trained on the cpap, etc.  

My parents got to meet our famous hero, Dr. Campbell, yesterday.  He is such a wonderful man.  I'm so thankful he gave my girl a chance at a better life!



So...almost home!  She won't be ready to go out anywhere for a while, but at least she can recover in the comfort of her own home!  She tires really easily and the meds knock her out, so I'm figuring she will need one or two naps a day.  


Thanks for all of the prayers and words of encouragement!  We are thrilled that she gets to come home so quickly!!!  God is so good!



Wednesday, April 29, 2015

Back on cpap

Abby was put back on cpap at 1 am.  She got worn out and could no longer maintain her sats.  I was also noticing increased work of breathing, even 1/2 an hour after giving pain meds.  (We were hoping it was just pain--no such luck).  So...we shall see what Pulmonology has to say about that in the morning.  She is already breathing much easier and her sats are higher since she was out o cpap.

And....1 am is also an excellent time to get a roommate, apparently.  I woke up to the sounds of moving furniture. Thankfully, the new roomie is only here for asthma and is not at all contagious.  Don't worry--I asked.  #nogerms

Tuesday, April 28, 2015

Another good day!

Abs had a good day, although she was a bit cranky at times!  It seems you are meanest to the one who is by your side taking care of you 24-7...

She was taken off of the pain pump today and therefore didn't need continuous heart and lung monitors...sweet freedom!!  We were even allowed to explore downstairs for a while this evening, which was lots of fun. She still has the picc line and needed a rescue dose of iv dilaudid today, so I'm not sure if they will pull the picc tomorrow or not.  

Her shoulder seems to cause her the most pain.  Her shoulder blade was stuck under the spine, so they had to pull it out...I'm sure it hurts!!!

The plan at this point is to try her off of cpap tonight.  If she can do it two nights in a row without desats, we will be able to talk about going home (!!!).  I'm not getting my hopes up too much, but I'm glad we are heading the right direction

Here are a few pictures from our day.  She did my nails. :)



Napping on momma's couch!



!

Monday, April 27, 2015

In typical Abby fashion

This morning, Abby was in so much excruciating pain that she just sobbed and couldn't even stand by herself for a minute.  The OT was really concerned that she wasn't making a lot of progress.  

Fast forward a few hours to when the PT came in.  Abby got out of bed, took a few tentative steps, and decided to walk halfway around the unit to the playroom.  That's so Abby!!  :)

She's still needing a strong hold on my hand, but this is a HUGE step for her.  The playroom is so motivating!  We were going to walk back there tonight, but she fell asleep in the middle of putting a puzzle together with me!  I think she's probably out for the night!

The pain team is in the process of transferring her over to oral pain meds now that she is getting more food in her belly.  I'm encouraging Abby to eat preferred foods and just putting the pediasure through her tube for now.  I have learned that pushing the pediasure too soon will cause her to be completely turned off to food completely.  

She is still sleeping on cpap and showing that she needs it.  The pulmonologist doesn't want to ake any major decisions about her future with cpap until her pain meds are decreased, but he warned us that there is a good possibility that Abby will go home with it--maybe short term, maybe not. If it's only at night, it won't affect our day to day life too much except that she won't be able to spend the night anywhere while she is on it.  Cpap really isn't what we want, but I just go back to we've done a trach and a vent.  We can do this!  

Sunday, April 26, 2015

8 south

We moved up in the world!  Well, to the 8th floor at least!  We've settled into our new room and even got to see our very favorite CHOP nurse for a few minutes!

We are on the Pulmonology floor, which is a great place to be.  The team here decided Abby needed to be on cpap tonight.  She will be off during the day, but we still need to wean her at night.  Given that she's on cpap right now and her oxygen levels are just at 91, I think this is a really good idea.  I'm still hopeful we can wean her from it before we leave, but we will deal if they can't.  

Abby was in a lot more pain today now that her pain ball catheter is gone.  I pushed the button a considerable amount and she still wasn't getting much relief.  I'm going to talk to the pain team tomorrow to see what we can do, because I want her to be able to keep moving around.  She's sleeping soundly now though, so hopefully she will last all night!

Post op day 3

Abby has had a big day so far!!!!  She got her drain and pain ball catheter out, her Foley catheter was pulled, she is off the cpap while awake as long as she does ok, and she got out of bed for the first time!  All before 12:00!!!

She went from the bed to a chair when she got out.  She didn't really walk at all and was heavily supported, but it was just nice to see her upright for a second!  She is now allowed to sit in the chair 3x a day for at least 30 minutes each time.  Tomorrow, we may try working on taking a few steps.  They brought us a tiny little wheelchair to sit in as well, but she's not cleared for going anywhere just yet.  

Pain wise, she is still having spasms around hour 4 or 5 after getting the Valium (it is given every 6 hours).  They added another pain med that we will give in between Valium doses, so I'm hoping that will help keep her comfortable.  It's sad to see her arching her back and kicking her legs from the sharp pain.  We just have to figure out the right combo to keep her comfy.  

Abby is also cleared to eat now!  I ordered her a variety of things, hoping to entice her with something....all she has eaten is 4 goldfish.  It's a start!  She is drinking apple juice like a champ though, so that's something.  

We have been playing princesses and she is acting like her normal cheerful self!  I love it!!!

Saturday, April 25, 2015

Sprinting



Abby was allowed to sprint off of the cpap for an hour!  She did really well, which means they will increase the time next time.  Typically, they double the amount of time for each sprint:  1 hour, 2 hours, 4 hours, 8 hours, 16 hours, and then off.  Sleeping will most likely be the last to be weaned.  As long as Abby needs cpap, we will be in the PICU.  

We are also working on increasing the volume of the pedialyte to get to the amount we typically give her (65 mls an hour).  

She's been much more awake today, and has started to play with toys a bit.  We all enjoyed a visit from our pastor Dario, who was incredibly sweet to drive all the way here!! He brought Abby some pretty cool toys that she loved!



The physical therapist got Abby to sit up again today.  She is more alert now, so we are able to get her sitting without a therapist. At this point, she can sit unassisted for 3-4 minutes.  

This surgery completely changed her anatomy, so she has to relearn everything--starting with how to sit upon her own.  We are hopeful that she will be able to walk at least short distances with a walker by the time we come home.  We knew all of this going into the surgery, so we are prepared for a long recovery.  I'm just not sure she was!



Like I keep telling Abs, each day is getting a little bit better!


Smiles

Daddy out on a puppet show for Abby's enjoyment! :)


It worked!



Post op day 2

Last night was a million times better!  It was a boring night.  In the hospital, we love boring!  Abby had a bit more pain this morning with some muscle spasms, so we started Valium to help with that.  She's been pretty comfy and is currently sleeping for the longest stretch yet!  I wish it were happening at night, but I'll take it at this point!  

She's been off of oxygen since yesterday afternoon and has done well.  They weaned the cpap down a bit and we are hoping we can trial her off of it this afternoon.  She's done well with the reduction so far, so we are hopeful.  I know she would love to get that awful mask off of her.  They have also started pedialyte and we will start trying some oral foods when she gets off cpap.  

Everything is heading in the right direction!  One day at a time.  Thank you for your prayers!

Friday, April 24, 2015

I'll never get used to it

"Code blue, 7 south, room 21.  Code blue, 7 south, room 21."

I look up in alarm as ten staff members take off in a dead run down the hallway.  The alarm continues to repeat the location as more staff members head that direction.  

I'll never get used to it.  Somewhere down the hall, someone's child is fighting for his or her life.  Next time, it could be room 6.  Somewhere, there is a mom praying that her child will make it.  Tears roll down my cheeks for her, because I've been there.  The image of 15 staff members crowding the room to attend to my daughter as her oxygen levels plummet will forever be sketched in my head.  

And I know that up and down the hallway, there are moms and dads just like me praying for the situation, but silently thanking God that it wasn't their child.  

This time.

Because, you see, parents like us--we live in the woods with our kids.  They are never truly "out of the woods."  We have just learned to find beauty in what the woods has to offer and make the best of it.

Post op day 1

The team met and changed Abby's cpap settings.  This means she won't be weaning off of it as quickly as we had hoped, but she is breathing much more comfortably and a repeat chest X-Ray looked better.  They are also giving her a diuretic to get the fluid off.  The team is pleased with how she has improved with the changes, so I think we are going to stay on this path for a while.

Sadly, the pressure from the cpap makes it really hard to talk.  It's forcing all this air into her lungs and she is having to push against it to say anything.  It's kind of like walking into the wind in a hurricane-pretty hard and exhausting!  The only thing she has said all day is her name once during therapy, but she is responding to yes/no questions and doing what we ask her to do, so it's not like it was last time.  

OT came this afternoon to talk with us about modifications for home and work with her a bit.  She got Abby to sit up for a few minutes on the edge of the bed, which was great!  Unfortunately, the movement and pain caused her to get sick. :(. She's on Zofran around the clock, but she has gotten sick twice so far anyway.  They have not started feeds yet because of it, and Abby has only had a few sips of Apple juice since getting the cpap (again, it's really hard to swallow when air is being forced down your throat!)

I met another veptr mom today whose daughter has been here for 11 weeks with a very serious lipung infection.  She's doing better, but still hanging out in the woods!  The little boy we met at rmh is still in a ton of pain post-op.  His mom and I were messaging back and forth at 3 am!  It's great to have some support here.  Our kids are SO strong!!!!

As usual, all of the doctors and nurses have been awesome!  We have had a great nurse, Noah, the last 2 days who never stops!  The compassion they all have is awesome.  Of course, we did have Joe Resident throw on all of the lights at 5 am and then later ask if she had ever had anesthesia before...as he looked at her gtube...and jaw scars...and trach scar...lol!  Gotta love the residents!  Seriously though, the whole team has really listened to us and done things based on how Abby has responded in the past.  I love that they bypassed morphine and went straight to dilaudid because I told them it makes her sick and doesn't work well enough anyway.  The care has been top notch.  We are grateful for awesome care in both of our hospitals!

Rough, rough night

Last night was not good.  Around midnight, Abby had to be put on cpap because her respiratory rate was in the 70s and she was taking really shallow breaths.  The doctor ordered a chest X-ray and saw pleural effusion, which is fluid surrounding the lungs.  It was confirmed with an ultrasound, and a repeat X-Ray was done this morning, so they are trying to decide if she needs a chest tube.  

Unfortunately, cpap doesn't seem to be working.  She's now on 3 liters of oxygen and still struggling to keep her oxygen levels above 90.  Her respiratory rate really hasn't changed much, despite the cpap. So....the nurse thinks if Abby doesn't show improvement, the doctors may want to intubate to give her lungs a break.  

Please pray that she starts taking slow, deep breaths.  I've been channeling my inner yoga momma to try to coach her, but I'm not cutting it!  

Thursday, April 23, 2015

8:00 update

My sweet girl woke up calling my name just to say I love you.  Soooooo precious!  She's still in a considerable amount of pain whenever she moves, but I'm trying to stay on top of it by pushing the pain pump before we try to move her.  So far, she's waking up for short amounts of time for juice or to adjust blankets. She had a good hour and a half stretch of great sleep, so I think that really helped her to be more alert.  

It's what I expected.  She's doing ok--one day at a time!  I told her each day wil get a little easier.  

I cannot begin to express how thankful I am that God strengthened Abby's ribs!  Dr. C told us in pre-op that he thought we would be ok, but there's nothing like hearing that the device is in!!!  This is Abby's chance at a long, healthy life, and we are SO very thankful.  Dr. C is our hero and our God is amazing.  

It was a good day.

Thank you to everyone for your prayers, good thoughts, and purple pictures!

1:30 update

We are with Abby!  Dr. C is very happy with how everything went.  Her rib is "stubby," but strong.  I'll take it!  The Picu team is now getting her set up and she's sleeping pretty hard.  

Here's the X-ray Dr. C. showed us.  This veptr will stay in forever.  There was supposed to be a long, straight rod as well, but the rib was too stubby for that.  He seemed okay with that though.  


Thanks for praying!!!!

12:15 update

THEY GOT IT IN!!!!!!  everything went very smoothly and they are closing now!  Happy tears here!!!!  We are praising God here!

11:00 update

Everything is going well.  They haven't started trying to attach the veptr yet.

10:11 update

The surgery officially started at 10:11.  Keep praying!

9:00 update

Abby went back around 8:45.  They were able to put the anesthesia meds right in he picc, so she didn't have to have a mask.  It was the easiest induction ever!  I held her the whole time and she was very calm.  

We were just notified that she was successfully intubated, so now we wait.

Abby thoroughly enjoyed looking at the #purpleforabby pictures while we were in pre-op.  I am certain we will look at them multiple times over the next week!  

Thank you all for your prayers!

Wednesday, April 22, 2015

Because He lives, I can face tomorrow...even if tomorrow is looking really, really scary.

Today was a little trial run for tomorrow!  Abby got her picc line and it went perfectly.  They were able to intubated the regular way with no issues...praise God!  Our difficult airway days are a thing of the past, I hope!  That jaw surgery was no joke, but it worked!

We were supposed to stay at the hospital tonight, but Abby did so well that they saw no reason for it.  She was sooooo happy when she woke up and I told her we could go back to rmh!  She enjoyed playing with her friends tonight.  There are lots of kids her age here right now, which always makes it more fun.  We also met another veptr family, who is wonderful!  I've learned a lot from them.

Tomorrow is the big day.  We have to be there at 7 am, and surgery should start at 8:30.  She went in pretty late today, but I'm hoping that since she is the first surgery, she will be on time.  I will update the blog as regularly as I can, but sometimes it might be a while until we hear something.  

Thank you for all of your prayers for my sweet girl!  She has loved the purple pictures already starting to roll in.  We would be honored if you would post a picture of you (or your pets!) wearing purple!  Hash tag it #purpleforabby so we can find it easily later! because she likes to look at them again and again during her recovery!


Tuesday, April 21, 2015

A New Plan

Abby has terrible veins and blows through very quickly....like within a few hours! That, coupled with the risk of needing tpn for pancreatitis issues, made everyone think a picc line would be in her best interest. This is surgically inserted and can stay in for a long time.  They can draw blood off of it and it's in the upper arm where she has full mobility, unlike some other iv sites.  We loved the picc she had in November!

Unfortunately, the length of Abby's surgery means she can't get the picc line on top of it.  They don't have the OR for that long.  So we were told this afternoon that they have to place it tomorrow under general anesthesia and they will then admit her tomorrow after she wakes up.  We have to be there at 11:30, so we are losing a free day. :(

This is definitely in her best interest though, so we are willing to sacrifice a day.  It's a pretty simple procedure and we aren't expecting any issues.  We would appreciate your prayers though!

Zoo Trip!

We took Abby to the Philadelphia Zoo today on our day off.  It is a gorgeous zoo!  Sorry Baltimore, but it beats the pants off your zoo! One of the coolest things is that they have these overhead walkways all over the zoo for animals to use...so tigers can be over your head!  It's pretty neat.  

This is part of a street mural before you walk into the zoo.

There were tons of primates--more than I have ever seen at a zoo!  They were in various habitats too, which was cool.  






There were free-roaming peacocks all over. We walked right up to this one!



We let Abby ride the carousel, which was made up of all different endangered rainforest species.  She was on a butterfly.  



Before our carousel ride

They had an awesome avian exhibit that allowed birds to fly overhead.  Abby loved it!!



We got to watch a zookeeper feed these little guys some lettuce.  


The magnolia trees were absolutely beautiful!

Abby picked out a new friend, a red panda she named Mia. :)


It was such a good day!  We all had a lot of fun!



















Wednesday, April 15, 2015

8 Days

What's been going on around here?

sleepless nights
packing
soccer
laundry
organizing
spending time with Caleb
work
cleaning up the house
giving teacher gifts
studying spelling words
phone calls
paperwork
making appointments
hotel reservations
grinding teeth
practicing math fluency
picking out movies and toys to pack
paying bills
cleaning the car
finalizing plans for Caleb
refilling prescriptions
stopping the mail

Soooo much to do, so little time!  The packing is as done as it can be until the day we leave.  We got thrown for a loop yesterday when we were told that the Penn Relays were coming to town and ALL hotels were booking up like crazy.  That means NO RMH discounts!  After search for hours to try to get into one of our "regular" hotels close to the hospital, I went ahead and booked something farther out of the city that won't cost me my right foot because we won't know if we get into RMH until Sunday.  History says we probably won't.  This hotel has an indoor swimming pool, so that should make Abby happy!  She'll enjoy getting to swim a little before it's back to not getting the stitches wet for months on end.

Tonight, I am hoping to clean out the car and clean the bathrooms.  I'm going to wait to vacuum and mop until Saturday so that it stays clean, but at least the upstairs bathrooms can be cleaned.  I've been working on emptying out the fridge so that we don't leave a bunch of perishables in there.


We just found out today that we won't be able to meet with Dr. C for pre-op because he is performing surgeries.  I guess it really doesn't matter, as he really won't be able to tell us anything until he goes in anyway.  We will still have our anesthesia pre-op appointment though.  (This is what most people can do at their primary physician's office, but Abby has to have additional examinations because of her airway.)  There's a chance that we will meet with the Nurse Practitioner before the surgery, but I don't think it really matters.  We are just going to have to wait and see.


There's not a whole lotta sleeping going on right now...I keep getting woken up by things that just have to get done...like buying Caleb a luggage tag on Amazon at 4 a.m.  Yeah.  I have sleeping pills for when the stress builds up like this, but they wipe me out so that I can't even function the next day.  Given that I'm working the rest of this week, being zonked won't work either!

I just keep praying the same prayer, asking God to please make her ribs strong--or show us what the next steps are.  Will you please pray that with us over the next 8 days?  And pray that God will give us peace.  The waiting is hard.

As always, we would absolutely love for everyone to send us pictures with the hashtag #purpleforabby on the 23rd!  Abby spends hours looking at them (over and over and over and over and over...) and especially likes when someone sends a picture of their pet dressed up in purple!  We will, of course, be wearing our Joy Runners shirts....but any purple will do just fine!  Tutus are even better!  :)

Thanks so much for continuing to love on our family!

Bella's Gift by Rick and Karen Santorum



On May 13, 2008, the Santorum family welcomed their seventh child into the world. Isabella Maria was born with a rare genetic condition called Trisomy 18, or Edward’s Syndrome. Only 10 percent of children with Trisomy 18 are born alive, and 90 percent of those children do not make it to their first birthday. Faced with these bleak statistics, doctors told the family to prepare for Bella’s death. Instead, they chose to celebrate her life.
Over the next five miraculous years, the Santorum family adjusted to life with a special needs girl—and watched her transform the lives of everyone around her. In many days of sickness and joy, she became an inspiration to her community and, ultimately, to the nation. Bella’s Gift details the peaks and valleys, the joys and sufferings, and the incredible value of life with a special needs child. In a world that often measures worth according to usefulness, Bella’s story is a reminder that our real value lies in our capacity to love.
Rarely does a book touch me the way this book did.  Their blatant honesty about their struggles of coming to terms with Bella's diagnosis, coupled with the hope they have in Jesus Christ, just simply made this book a joy to read.  The reoccurring theme throughout the book was that one's value is in his or her capacity to love.  This is so evident in Bella's life and all who know her!

Wordless Wednesday

Friday, April 10, 2015

Hearing Aids Have Changed My Girl's Life!!

I never really thought hearing aids were a big deal to begin with.  After dealing with a trach and a vent, what's a hearing aid?  Plus, no one even really notices them because her hair completely covers everything.  Except that Abby loves to show them off ("See my purple sparkly hearing aids?!?!"), no one would ever have to know she had them.   But even if I did have reservations in the beginning, I'M A BELIEVER!!!  I love those tiny molded pieces of plastic!!!!!

The differences we have seen in Abby have been so amazing.  We had no idea how much she was missing until we saw how much more engaged she is now.  She is part of every conversation, throwing her two cents in whenever she pleases!  Caleb jokingly commented that he didn't think she could get any sassier, but she has!

Conversations in the car were basically non-existent because she just couldn't keep up with what we were saying--especially when I couldn't look at her.  Now we happily talk about school or play little games as we drive.

I've never gotten much out of Abby regarding school. Sure, little things might slip out here and there regarding what they did, but she has never really told me a lot.  Yesterday, she filled me in on the tallest, longest, and shortest animals that she learned about that day in class without me even asking, and then she proceeded to quiz me about the information!  I have never heard her go into that much detail about school in almost the two years she has been there.

I am so thrilled for her and know this will only help her as she begins school.  I'm so glad we were able to get them now so that she will start pre-k next year as equipped as possible.  With so much improvement in just two weeks, we are excited to see how much she is able to learn now that she can actually hear!  Thank you Lord for technology!

Wednesday, April 8, 2015

Rib Meat

Guys, I'm gonna be real.  The anxiety about the upcoming surgery is creeping up again.  Last time, Abby's ribs were too flimsy to hold the veptr.  Dr. C. Called them a "ribbon consistency."  So he did bone grafts and we are trying again on the 23rd.  

Please pray for MEATY RIBS!!!  We want these ribs to be nice and strong so that they will hold the veptr device properly.  No one chooses the veptr unless there are no other options, so we have been praying fervently that the veptr will be implanted to give Abby a new lease on life!

We won't know if the bone grafts worked until the surgery begins, so that gives us 15 more days to pray for a miracle!

We would also love for you to pray that Abby doesn't catch any germs between now and the 23rd!  We don't want to have to postpone the surgery if we can avoid it.  

Thank you, prayer warriors! 

Monday, April 6, 2015

Pinteresting

I've had several handprint projects pinned for some time and was SO excited to be able to do them today!!

Micah 6:8 is Matt's favorite verse and I've been wanting to do this for several years.  I'm glad I did it now, or the kids' hands and feet wouldn't fit on there much longer!  I love the finished product of this.  


This one didn't turn out as well as I would have liked, but I still think having all of our handprints is sweet.  

Sunday, April 5, 2015

Happy Easter!

Happy Easter from my bed!  Round 3 has been as much fun as rounds 1 and 2.  

Not really.

I slept until almost 1:00, but my fever is back and I'm not keeping food down again.  Blech.

On the bright side, I have cute kids and a handsome husband.  My sister sent me these pictures she room at my parents' house.  The blurriness is because she took a picture of the preview screen from her camera.




Wednesday, April 1, 2015

Presents!

When you're shopping for Caleb, you can't go wrong with Legos, Star Wars, knights, or war.  Any combination of any of those is just a bonus!

This gladiator battle set has been SO much fun!  The kids play with it all of the time, and it has been an unexpected core workout for Abby's physical therapy!

Star Wars and Knights Legos...and the boy is happy!

"Abby" gave Caleb two new Wii remote/nunchuck sets so that he could have friends play at the same time when they came over.