A Few Day's Late

I'm a few days late updating you that we are HOME!  They ended up pulling her remaining chest tubes on Thursday and then we were discharged on Friday (9/25).  Once the chest tubes were pulled, Sloan was like a new girl.  Running around, acting like herself.

Since we have been home, things have been going pretty well.  Sloan hasn't had much pain, so we have been able to cut back on her pain medications.  We are still giving her some diuretics and her daily aspirin but that's it right now.  Her sleeping schedule is still a bit off - she's waking up at night and not going right back to bed so she ends up in bed with us.  Hoping we can focus on a schedule this week to get back on track before I go back to work.

We have a check up on Wednesday so I will post more after that.  Everyone is very happy to be home and to have the surgery behind us!

Sloan's last picture before we were discharged the next day.
Some of the UofM athletes visited Sloan and gave her a new pink hat.

Drain, Drain, go Away....

Unfortunately, our motto remains - they didn't end up pulling her chest tubes today.  There were two key issues:

1. Her morning labs came back that she is on the drier side.  They don't want to pull the tubes and then when she goes home, and is on less medications to pull fluid off her, she begins to retain fluids around her lungs and become admitted again.  To help with her being on the drier side, they are reducing her medications today which is a good thing as she HATES her meds

2. Her tubes began putting out more fluid over night then decreasing.  They want to see the opposite.  

So to be cautious, they are going to wait another day and if things are going in the right direction they will pull them tomorrow morning.  

Yesterday (Tuesday) Sloan had a good day.  At around 5:30pm she all of a sudden got a burst of energy and was doing summersaults in her bed (it may be due to her having another bowel movement).  So we got out of bed and went to the play room and I could barely chase her around with her chest tubes she was moving so fast.  I had to ask her to slow down!  It was good to see her  more herself.

Feeling more like herself!

We Have Poop!

Well the big news for today is, we have poop.  Finally, this morning, she was able to have a small bowel movement.  If you have ever been in the hospital post surgery, you know that's a big celebration around these parts.  The rest of today (Monday) has been pretty good for Sloan.  She's been up moving around, took a good nap, painted a wooden horse in the Child Life room, ate a good dinner, and has been goofing around with mom & dad.

Found her in bed with stickers all over her face - goofy girl!

They also separated her chest tubes this morning so they can begin to measure if one is putting out more than the other.   Her center chest tube was taken out yesterday so if one of her peripheral chest tubes is putting out less than the other, they could pull that one as well.  They decided to do this because Sunday Sloan had some major back pains.  She pretty much laid in bed all day moaning about her back.  They found out it was due to her chest tubes moving and at least one of them now pressing on her back.  There isn't much they can do for that except monitor it with pain meds and continue to work towards getting the drainage tubes out.  So our new motto will be...drains, drains, go away.

Sloan continues to have a hard time with all the oral medications she has to take.  Many of them cause her to gag/have an upset tummy, so we've had a few baths and outfit changes over the past few days.  Kyle and I are beginning to learn the order and timing of giving her medications in order to prevent her from getting sick.  We are still perfecting this, but it's a trial and error process.  You can say we've had lots of errors (aka: lots of puke)!  :)

One of her, many, baths the past two days. She pretty much hated
each one (and this shampoo cap) so always had this sad face.  

Goals remain the same for tomorrow - eating, drinking, bowel moment, and getting out of bed!

On the Mend

Sloan has made some great progress the last few days.  Here is a quick recap since our last post:

Thursday evening - We had a bit of a rough night, up every three hours for meds which was not a fun, nor easy, process.  Sloan was still showing fear when any nurse comes into the room.  She keeps thinking they are going to hurt her.  So when they come in for medication, it's a fight.

Starting off Friday feeling better

Friday - We had a slow start to the day with lots of cuddle time in the rocking char.  Mimi, Poppi and Drake came up for a visit mid morning.  Sloan was very excited to see them all.  Drake was so good with Sloan, he was trying to make her laugh by making funny faces.  He knew she wasn't feeling good and I think was trying to cheer her up in his own way.  After they left Sloan took a good nap then when she got up was ready to go.  She walked some more, even walked all the way to the play room, began to take her medications without a huge fight, and asked for dinner.  We were quite impressed!  She ended up eating some chicken noodle soup, got a bit of a sick tummy so some of it came back out, but after that she was ready to eat some more.

Friday night Sloan had a great nights sleep, which means mom and dad did too!  Our nurse overnight must have had the touch because Sloan barely made a peep when she would come in and out.  She just fussed a little bit when it was medication time.

Reading books - one of her favorite things to do.  We even found
one of the books we donated in honor of her 2nd birthday in the play room

Saturday - We all slept in a little bit longer (around 8am) which was a nice feeling!  When Sloan got up she was ready to get up and play again.  We had her up and out of bed in the play room which she walked to on her own again.  We also had more visitors (Aunt Lori, Anna, Alex, and our friend John).  Sloan enjoyed the attention. :)  Sloan continued to eat, without getting sick this time, and seems to be more like herself as each day goes on.

Blowing, and catching, bubbles.
Blowing bubbles helps to open up her lungs

Goals for Sunday are - to get her middle chest tube out, get a bowel movement, and continue getting food & fluids down.  I think we are well on our way to hit these goals.  Everyone keeps telling us how she's the champ of moving post surgery.  I don't doubt it with this girl - her determination is something to be proud of.

General Care

We were moved to general care today around 1:00pm as Sloan has been doing well.  She's off oxygen and her IV meds except for liquids.  She hasn't wanted to eat or drink anything so they want to make sure to manage her fluid intake and output.  With the move, we also received our eviction notice from the in house Ronald McDonald House.  The rooms in the hospital are for parents of those in the ICU.  Since Sloan was promoted out, we also were moved out.  For now we'll all hole up in Sloan's room until a room in the large RMH opens up or we are discharged.  Either way, we'll make it work!

We've had a pretty busy day in general care as well.  They want Sloan to get up and move around as much as she can to break up fluid in her chest so we sat together in the rocking chair, went to the play room, and even got her to walk a little bit.  We are quite amazed that just yesterday she was having surgery and a little over 24 hrs later she's out of bed!  I joked that the last time I had the flu I was down and out for three days before I even attempted to get out of bed and do anything productive.  She's a much tougher girl than I am!

Our goal continues to be to manage pain, get her to get (and keep) down some fluids, and continue to get her up and out of bed.  Her pain management has been pretty good so far, she's getting something every three hours (they stopped her morphine drip up in ICU, so all pain meds now are oral).  Periodically she mentions having back pain - which they say comes from the chest tubes.  Sloan currently has three chest tubes, but they are hoping they can remove the middle one soon.

Drake will be up tomorrow for a visit so we are wishing for a good nights sleep so she has some energy to show drake around. :)

Back in Familiar Grounds

We are settled into our room in PCTU and have seen many familiar faces already!  It's nice to have so many people remember us and welcome us back with open arms.  Another reason why we love Mott!

Sloan had a rough go when she got up here, was uncomfortable, thirsty, and in and out of sleep.  They have got her settled in now and resting.  She insisted on having her toys from pre-op in bed with her now so she is sleeping side by side with her tea set and treasure chest.  She should be able to start eating and drinking around 7pm this evening (6 hours post extubation) so once she wakes up she should be a happy girl as she's been begging us for water.  They hold fluids as it can make their tummies upset and cause vomiting.

The fellow that works with Dr Bove stopped back in and let us know he thinks Sloan is doing really well.  All things she is experiencing is normal for someone just out of the Fontan.  They did have to start pacing her as she kept going into a different rhythm which was affecting her blood pressure.  Again, something that is considered normal at this point.  She's on a little bit of air right now, and will be over night.

We were able to get a room in the Ronald McDonald house inside the hospital so the plan will be for one of us to stay in the room with Sloan and the other will head to the house.  They told us to expect her to be up and down tonight.  We are hoping she can get in a good nights sleep and feel a little bit better tomorrow.

Update #2

All is going well.  She's off bypass, they finished the procedure, and are currently doing an echocardiogram.  We should expect to hear from Dr Bove in an hour, and then be able to see her in two hours.  They said she did really well!

Fontan Time!

Last night was pretty uneventful, minus the fire drill at 10:30pm and Sloan being all rilled up and a goofball after the commotion.  She was singing and mocking Kyle and I as we tried every trick in the book to convince her to go to bed.  Regardless, we successfully still made it to pre-op on time and Sloan was in great spirits.

The team took her back around 7:30am.  She was all smiles and excited to go see Dr Bove.  They told us to expect one hour for anesthesia to get her settled, then the surgery to be around 4 (ish) hours.  Their hope is to get her off the vent and close her chest in the OR, but couldn't promise us anything.

BREAKING NEWS.....Our first update just came in (literally) and she is doing well - went to sleep nicely for anesthesia, and was just put on bypass.  They are now starting the repair.  Should have another update in an hour.

  

And We're Back

We arrived back at Mott's around 6:30pm this evening, checked into the hotel, had dinner, and are now all settled in for the night.  Sloan slept the entire car ride here and is in great spirits.  She has been excited all day to get to see her doctor's tomorrow morning.

Big girl pulling her own suitcase

We check in for surgery tomorrow morning at 6:15am so she'll be the first case of the day.  As we get updates we'll make sure to keep all of you updated as well.  Say some prayers for a textbook surgery and smooth recovery.  We are also saying our prayers for her surgeon and his team - for a great night of sleep, a clear head, and steady hands for tomorrow.

Settled in and ready to head to bed

Fontanning 2015

We've been approved for the Fontan!  Sloan had her pre-op work last week and all signs show she is a good candidate.  Sloan was a dream during all her pre-op work but had a rough time after her cath.  She wasn't happy with anything!  She made her mom & dad work in recovery.

We head back to Ann Arbor on September 15th for surgery September 16th.  We'll keep you posted on how things go!