Tuesday, January 19, 2016

Open Heart Surgery - Going Home

After six nights in the hospital, Allyn was discharged from Lurie on December 22.  It was great because that Tuesday was also Nolan's last day of school leading up to Christmas break.  So we were all home for Christmas.

We just had to wait (and wait) on all of her discharge papers and medicine.  That took a while.  I know they have to cover all the bases, but once they tell you that you get to take your child home, you are kind of ready to hit the road.  We watched some shows on the ipad.

 Took a couple more walks around the floor....getting a "she's so cute" from all of the nursing staff that saw her.
Changed into our "street" clothes.  

 And hit the road just after lunch.  We made it back to the house in time to see Nolan and Mimi walking back from the bus stop.

Lurie Hospital is amazing.  Dr. Backer is awesome at his job.  The entire cardiology team was phenomenal.  Not once did we feel like they were glossing over her condition or getting her to her very best.

Leaving the hospital, I know how lucky we are.  On so many levels.  We were able to treat this condition.  We are educated enough that we explored every avenue and made informed decisions about our daughter's care.  We have a girl that loves big and has a charisma that pulls everyone in.  Even with her curves and holes, she is the greatest gift and if given the choice, I would choose her again and again.

I know that some how we are meant to bring awareness to this condition and her scoliosis too.  I just don't even know how to begin.  I often feel like I'm missing the boat on spreading awareness of how these things impact her life and all of the warning signs parents should be looking for.  It's a lot to digest.  And where to begin.

But for now, I will just keep soaking Allyn and her sweet smile and request for snuggles in.  Loving the many gifts our family has been given.

Tuesday, January 12, 2016

Open Heart Surgery - Days Four, Five and Six

By the time Allyn got to day four at Lurie, things seemed to be going pretty well.  She was most certainly feeling better.  Her oxygen levels stabilized after a breathing treatment; she had a partially collapsed left lung.  Other than that, her only issues were that her heart rate was still very high and on the echo they noticed more regurgitation on one valve and the other still had some.  But by all outward appearances, she looked just fine.

I was able to head back to the house on Saturday after Ben got to the hospital.  Nolan had his last indoor soccer game of the year.  How cute are these boys?


I hung around for a bit to get Allyn up and moving.  Our nurse was Natalia and she was super sweet.  She involved Allyn a lot in the whole process which seemed to be well received by the little peanut.


 Once she got started on a few activities, I packed up some of my stuff and headed home for real shower, some good food and quality time with the boy.
 I originally thought we would be heading home on Sunday.  That wasn't the case.  Allyn's heart rate was still in the 150s.  Pre-op she was in the 120s.  So we had to do a bunch of tests to see if the doctors could figure out if there was a cause.
 So we hung around Sunday and Monday too.  Our doctor on the floor those days was Dr. Smith-Parrish.  She may be my all time favorite person we had at Lurie.  Talk about a great bedside manner.  You just knew she was doing everything that was best for Allyn but also recognized that we were all really ready to get out of there.
 On Monday I headed back to the suburbs super early in the morning to help with a gingerbread house day at Nolan's school.  In the past week I had only seen him for a bit on Saturday and knew that it would be special for me to surprise him at school.  I left my phone in the car so I have no pictures, but we had a great time for that hour.

Little girl hung out with daddy and did some work.

By Monday night, it was obvious Allyn was back to herself.  She was playing doctor and up and walking around the floor.  
 She was also eating!  And they started talking about discharging her on Tuesday.  They had examined every possible cause for her heart rate to be so high and they couldn't find a cause.  It appeared it was just a post-op thing and they would be watching it and hoping it would come down with time.  They also started her on a blood pressure medicine and kept her on Lasix to see if it could reduce some of the work her heart was doing.
 And it was a good thing they started talking discharge.  Because later on Monday night, Allyn figured out that the buttons on the bed MADE IT MOVE!!!  It was amazing.  Until I locked them.  Fits were thrown and I knew for sure she was officially back to herself.

Monday, January 11, 2016

Open Heart Surgery - Days Two and Three

Days Two and Three were the hardest.  Her heart was fixed, but now she was coming off of all of the good drugs they give you in the operating room.  She still had her morphine pump, but we really couldn't tell a difference if we were giving it to her or not.

They started giving her another drug called toradol that would help more with the muscle pains she was having most likely from having her sternum opened.  We were hoping that this would allow us to take away the morphine.  I knew morphine would add to the constipation and she wasn't eating anything.  Day two our goals were to see if I could get her to eat or nurse and to get her up and moving around.  She still had a line in her arm and her chest tube and her central line and a nose cannula for oxygen.  Just a quick little stroll around the floor was a lot of work.
From my standpoint, day two was the hardest for me as a mom.  She was clingy and I could tell she was tired.  But she was also very restless.  Her oxygen saturation levels kept dropping into the 80s.  But she really wanted that nose cannula off.  And I had gotten maybe and hour and 45 minutes of sleep in the past 30 or so hours.

 So that she could get some sleep, I decided to just hold her and see if she might nurse (she didn't) and use the oxygen mask close to her and see if I could keep the alarm from going off.  She slept for over three hours like this.  She only woke when they had to come in and do the checks.  It was the most sleep she had gotten in the past two days.


We had a great nurse that night who tried to let us get some sleep.  I think her name was Ashley.  I was so thankful for her that night because even an hour of uninterrupted sleep was oh so glorious.  It was also our first night at the hospital without Ben there.

We started off Day Three with a new nurse, Josephine.  She was hilarious.  She called Allyn, "girlfriend."  Allyn was still pretty pissy, but Josephine was doing her very best to lift her spirits.  She was also great an answering all of our questions, because at this point we had a lot.  We wanted to know what we needed to do to get out of this place, what meds she was getting, was being this wiped out normal, etc.

Santa also came by during our visit.  Allyn still wanted no part of Santa.  She looked away.  He gave her a stuffed toy cat.

 On Day Three, it was my goal to get Allyn up and walking.  (I think this is also the day that the Foley catheter came out.)  We took her around the floor to see the babies on the other side of the unit...tiny, tiny babies.  This was the highlight of her every day.  The girl loves a baby and there are a lot of them over there.  A lot of them are on breathing tubes and covered in cords and you can't see them but some are up and playing or being fed and she just loved being able to see those sweet babies.
 After a walk around the floor, we tried to get her standing.  We did get her on her feet.  She wouldn't take any steps, but I figured this was a good start.  I wanted her to feel confident that even though she was in pain she could still start working to get her mobility back.  I was hoping by moving her body around she would start to feel better.  But I guess it was too soon.  She was super tired and crabby.  But it was a start.
 On Day Three she also got a terrible case of contact dermatitis where the tubes from the nose cannula were rubbing on her face, ears and neck.  It was red and actually oozing stuff.  She was actually looking worse all over, her oxygen wasn't stable, she wasn't pooping or eating, and now she had this terrible rash.  I really just felt awful for her.
 But as the day came to an end and we got closer to bedtime, she started to come around to feeling (just a tiny bit) better.  She was able to even eat a couple of bites of spaghetti and a little bit of ice cream at dinner time.

At this point, I was kind of starting to think that we might actually get out of the hospital in a couple of days.  We finished up dinner and said goodbye so Ben could go home for the night to hang out with Nolan.

Wednesday, January 6, 2016

Open Heart Surgery - Day One

I wanted to come back and elaborate on Allyn's time at Lurie.  The whole is experience was more calm than I anticipated.  The staff there was amazing.  Amazing.  I cannot say enough things about them.  Seriously, I could probably write a series of blog posts about every single person that worked with us while we were there.

We arrived at Lurie first thing in the morning.  Early commutes into the city usually prove uneventful, and this trip was no exception.  Right in to the heart of downtown, easy-peasy.  We were given our badges at the front desk.  From there we headed up to the 7th floor.  It was probably around 6:30 a.m. by the time we were all situated in the pre-op room.

Vitals were checked and things were loaded into the computer.  We talked about drug reactions and how she has done post-op for other surgeries.  As a parent, I have committed to remembering pretty much everything dealing with any surgery she has ever had.  Thankfully, I have a great memory and can recall every major event and most of the mundane doctor's appointments too.  If I wasn't great at it, I would probably make a book to take with me.  And at some point down the road, when there are too many things to keep track of mentally, I probably will.  Our anesthesia team was so very kind.  The doctor, who's name I don't remember, was very reassuring.  He had recently had a child that was admitted due to seizures due to an infection.  As a parent, it's nice to know that your doctor has children and relates a little bit to the anxiety you may feel during a situation like this.  But honestly, I wasn't that anxious.  I kept telling Ben I knew this is what needed to happen.  We had exhausted all other possibilities for repair and her heart had to be repaired.  It was a weird thing to not be totally freaked out about this.  Because I'm the person that freaks out when the dishwasher is loaded incorrectly (yes, you can load a dishwasher incorrectly).

Once the vitals were done and all of the pre-op questions asked and answered, we waited.
It was a pretty short wait.  We cleaned her one more time with some sort of special pre-op wipe, wrapped her in a blanket and headed back toward the surgery area.  Once we reached the locked doors, I handed her off to the anesthesia team and they took her away.  I did get a little sad at this point; not because I was uncertain of how the procedure would go, but because I knew that when I saw her again she would be forever different.

Ben and I went to the 11th floor to grab some breakfast.  I also talked to my sister who had just gotten out of rehab.  I fear it may be the last time I ever do talk to her.  We finished our food and headed up to the 15th floor to wait on the surgery team to give us updates.  The nurse practitioner the day we were waiting was Holly.  She just had an ease about the way she delivered our updates.  She was professional and compassionate.  Again, I could go on and on about the staff.  We got hourly updates for the first three hours.  And at the hour five mark, her surgeon, Dr. Backer came in.  We were told to expect a four to six hour surgery.  And here he was right at the five hour mark from the time she went back.  

The surgery went as planned.  Her atrial septal defect was about 20 millimeters.  To give you some perspective, it was roughly the size of a quarter.  Dr. Backer expressed his opinion that the catheter closure would have not be successful.  Her margins were non-existent and the occluder would have put pressure on her aorta.  It was in that very moment that I knew God had very carefully walked us through this journey.  Not allowing us to do more harm than good.  He said she was waiting in her room and we could go back because she was asking for me.  It was odd in the way they said it.  Like maybe most kids don't ask for their parents as soon as the breathing tube comes out.  But she was very aware and wanted me right there with her.  I was happy to oblige.  
We spent the next several hours just watching her.  There are a lot of tests that happen post-op.  Labs every couple of hours.  Vitals every hours.  Not a lot of sleep on anyone's part.  Once Allyn's meds started to wear off from her surgery, things were getting a little tougher.  She was restless. 

There was a central line and an arterial line.  She had a chest tube and was getting oxygen.  She also had on a pulseox sensor and a blood pressure cuff.  Moving around her was not an easy task.  She had a morphine pump and they encouraged us to push the button hourly, but we could push it as frequently as every 8 or 9 minutes.  

The one thing I know with certainty now about this sweet child, is that she is a WARRIOR.  She wasn't pitiful or weepy.  She just wanted us near.  But you could sense this girl's fight.  Allyn has this thing about her personality; she is adorable.  She pulls you in and wraps you up in her charisma.  So it was quite the change for us to see that she is also equally strong.  

That first night was rough.  We were on two hour checks.  But checks the first night took about 30 minutes.  So by the time we got her back to sleep, and then we got back to sleep, the nurses were back in within the hour.  And Allyn wanted me close.  I spent part of the night perched on her bed and the rest of the night trying to maintain physical contact with her while dozing in the chair.  No easy feat.  



But her heart was repaired.  Exhaustion couldn't stop us now.