A Good Day

We had a good day today.  Things feel like they are moving in the right direction.  Our night nurse was great last night.  Logan had the best night yet, and that means so did I.  Good sleep always helps you feel better.  And lucky us, we get the same nurse tonight.  She promised to do everything the exact same.
Logan's chest tube drainage decreased today, he moved a lot more, he ate and drank a lot more, and he was happy.  We are still trying to manage his pain, but I think we are figuring things out.  Today was the first day I allowed myself to think of home.  I still don't think it will happen tomorrow (or the next day), but I doesn't feel so far off.  Making it home by Christmas I think will be next to impossible.  We prepared for this, but it doesn't make the reality of it any easier.  As I prepared for this surgery I told myself and everyone else we would be pushing it to be home by Christmas, but deep down I was still hoping.
It is hard to remember it is Christmas time.  I see the decorations, but hospital life is so strange.  Days run together and everything feels like you are simply just trying to make it through each hour.  It is hard to think beyond yourself, or your child.  I was humbled today when I talked to a man I had mentally made pretty harsh judgments about.  He looks really rough and kind of scary.  Then he stopped in the hall and let Logan crash into him in his Lightening McQueen car and went out of his way to talk to us.  Then I saw beyond the tattoos and piercings and saw a dad that loved his baby.  Everyone here is fighting for the life of their child.  The traditional Christmas celebrations take a back seat while we all just hope and pray to keep our families together for as long as possible.

We are saw more and more of our Logan as the day went on today.  He was a lot of fun and it was a full time job for 2 to keep him busy!

 I love my snuggle time with him.  He will ask me to come lay with him and he always has something that needs to be rubbed.  Today it was his belly, and then he loves the security if you just holding him tight.  I was snuggling him up close after getting his chest tube drained (this was hurting him today because it pulls inside of him) and he wouldn't let me move my arms from his shoulder and legs until he fell asleep.  I am sure he needs to feel some kind of security.  I can't imagine how he is processing the trauma of all of this in his mind.

Brad just laughs at me when I don't move after he falls asleep.  I love snuggling him.

We played play doh and cars

 

 He had to take a quick break from playing in the toy room for mom to hold him quick and rub him because something felt ouchie.  Brad got the camera out he immediately put his arm up around my neck then stuck out his tongue! 

We have some sort of gaming system in our room like a play station or something (not even sure what it is) And Logan loves to pretend he can play this Monsters Inc. game they have.  Neither Brad or I know how to even use the controller so it is comical.  Logan has figured some things out, but usually we have to turn it off because he gets frustrated or stuck and we don't know how to help him.

This is when he came back for nightly meds.  It was a battle to get him back to his room again.  Then when we got him in here he hid and refused to leave the car!

 

He made so much progress physically today.  It was great to see him be able to get on the floor and move a little more.  We are making progress.

Post-op Day #6

Here is a picture worth documenting. 

Logan took his first voluntary bite of food today.  Voluntary meaning he actually held the food and put it in his mouth on his own.  Everything he has eaten so far has had to be fed to him and coaxed into him. Hooray... we will take any progress.

He finally cooperated for physical therapy today and had a great time.  He walked a lot more today and even stepped up on a step.

He got lots of prizes today... we needed every amount of bribery we could come up with.  He is done getting ouchies and taking yucky medicine.  Thank you to all my ward members who sent prizes for Logan... I am sure we will use every single one of them. 

He spent as much time as he could in the playroom today.  He was hooked up to IV meds and fluids most of the day so we took advantage of every break of being tethered to the bed and played. 

 Dad was his security today.

(I got the middle of the night shift)!

Logan has claimed this car as his own.  Today another little girl used it for awhile and he had the biggest melt down.  This gets him from our room to the toy room and he LOVES it.  He will crash into nurses and beep the horn at anyone passing.  He loves escaping his room.  We had to coax him out of the toy room tonight at 9:00 pm for his nightly meds and vitals.  He refused to get out of the car outside of his room.  He said he didn't want to go in his room because he didn't want any ouchies.  This breaks our hearts.

They know Logan loves to paint so the child life specialist will leave out paint and little things for him to paint when he can escape to the toy room. 

The cute little blue hippo sitting on his head was the sweetest gift from the patients mom that was next door to us.  There is a glass wall with a curtain dividing us so it is relatively quiet but it does not keep out a screaming 3 year old.  We met this sweet family yesterday and got to share stories (her daughter is 17).   I apologized for waking them up at all hours of the night.  They were able to be discharged today HOORAY after a very long time being here.  I was so happy for him.  They gave Logan this Hippo and wished him well.  There are so many good people in the world. 

 

We had some really rough times today, but we also had some good ones. 

For the medical details he is still draining a lot out of his chest tube.  They added another diuretic today and he is having success with wet diapers.... we have had to change his pants three different times today because he fills the diaper to capacity.  We hope he can start loosing fluid that way instead of his chest tube. Last night was an especially hard night, so we are hoping for a better night tonight. I asked that they switch any med they could back to IV instead of oral because he won't even take his Tylenol anymore.  This helped a lot today. Here is to hoping for good sleep and less fluid.

 

Feeling a little discouraged

I think all three of us feel a little defeated/discouraged today.  I know we are only 5 days out from surgery (I can't believe some kids are able to go home at this point).  But I knew going into this that we would have some bumps in the road, like always Logan likes to do things his own way.
Logan had a great night.  Our room is quiet.  I slept pretty good until 5 am when I got up to help with x-ray and realized Logan still hadn't peed.  3 doses of diuretics and still no pee.  Pretty crappy, I was nervous.  He was miserable and couldn't get comfortable after he woke up.  The doc came and checked him out. 
Now at the end of the day this is where we stand...
His x-ray was unchanged today from yesterday, meaning all the draining from his chest tube was not draining the pocket of fluid in his lungs.  He has what they call a pleural effusion on his right side (common issue with this surgery).
He is draining an insane amount of fluid out of his chest tube.  It went from 50 mls on Wednesday to 370 mls yesterday, and he is on track to pass that number today.  You want to see that number decrease every day and in a lot of cases be completely done draining by now. 
His labs showed his numbers are off.  His potassium is low and a couple of other things.  I asked if they could do his potassium through his IV so I didn't have to cram it down his throat (that is the worst tasting stuff I have ever tasted).  So we started it through his IV and I guess some patients say is kind of burns.  They ran it pretty diluted, but Logan would just scream the whole time that it hurt.  We tried to console him and help it for 20 min with heat packs and distractions, but it never eased up so we called it quits.  By that time I was crying with Logan, and I don't think Brad was far from joining us.  It was heart breaking.
I hate hospitals.  I hate that by trying to help Logan we have to hurt him.  I know the nurses think we are too easy on him and don't push him to do things that hurt.  But I don't care, I really, really don't like seeing him suffer.
They did an echo to check his function and the fenestration in the conduit.  Now this is where I might loose those of you not familiar with this surgery.  With the Fontan they detach his inferior vena cava from his heart and add a gortex conduit to bypass the heart and connect it to the pulmonary artery to give a passive flow of blood to his lungs.  They do a fenestration or a little pop off hole to help with pressures.  The surgeon put a good size fenestration in Logan's conduit, but in the echo it showed his body has possibly already "clotted" around that hole.  This gives him great oxygen saturations, but doesn't give a pop off for extra pressure. This could be the reason for all the extra fluid.
The other theory could be a medication he was on prior to surgery, Carvadilol, was started again yesterday.  This isn't a med they use a lot out here, but felt like it was something his docs in Utah wanted him to continue on.  This drug helped Logan so much before the surgery, but maybe he doesn't need it anymore.  This drug slows the heart rate and helps with function.  It could be that it slowed his heart rate down too much and is allowing fluid to build up.  We discontinued the med tonight and we will see how the weekend plays out.  If his drainage slows down that would be awesome.  If it doesn't Logan will be visiting the cath lab to have that fenestration opened again and then put on some anti-coagulant drugs.
We are taking one hour at a time right now.  Some hours today have felt like days and some have been good.  We are trying to not give the hard narcotics for pain too much because they cause constipation and can cause urinary retention so we are treating pain with an IV pain med, but he can only have it every six hours.  We do Tylenol in- between, but it gets rough.  It is so hard making these decisions because everything has a side effect.
So there you have it.  Probably way more information than anyone other than a heart mom wants to read, but that is our day.
We had few good moments today.  We spent some time in the toy room.  They had a Christmas party and Logan loved painting some ornaments that are now hanging up in our room.  He played really well for a good hour in there.  He also played play doh for awhile, but that got frustrating with only having one hand (his IV is in his left hand so he can't use it).
We can't get him to walk or stand up today, but we are trying.  He has gotten about 5 new "reward" toys today as bribery to get meds down and stuff. 
He is requesting a trip to the toy room, so we are going to go sneak in after hours... I will post some pictures later.

One step back one step forward

That is how the last 24 hours have felt around here. Let's hope now we can keep taking steps forward.
So here is the scoop for now...
 Logan was transferred out of the ICU yesterday to the step down unit.  Unfortunately since they are crazy busy around here we were moved to a shared room.  The family we shared with was as sweet as can be, and were not a problem at all, but their baby was 10 weeks old and cried like a baby at that age should who is being starved all night in preparation for surgery today.  My heart went out to them, so I tried hard not to get frustrated at our situation, it was out of my control.  Logan and I didn't get a whole lot of sleep.  I requested first thing this morning to be moved to a private room if at all possible.  Our wish was granted.... hooray!  We are now in a super quiet, private room.  Funny story though, at 4 am when the baby was crying Logan was wondering what in the heck was going on.  He asked me to make it stop.  As we were preparing to move rooms this afternoon they moved in a new baby to our shared room and he covered his ears and said, "I don't want to hear a baby cry."  It was the cutest little baby only 2 days old and Logan wouldn't even look at him.  Our new room is WONDERFUL.  I am trying really hard to focus on the positive.
Logan has had good moments and not so awesome moments.  He is exhausted and just simply making him sit up wipes him out.  Physical therapy and Occupational therapy keep coming to work with him, he is not a fan of them.  I was starting to get worried with the lack of progress we were making, but then this afternoon we have finally started making progress. 
Not to give too many gross details, but Logan just needed to poop!  We finally took drastic measures today and had to do an enema... we had tried everything else, but nothing was working.  It finally worked so we are hoping he will eat now.  Since Sunday night his total food intake is probably the equivalent of one strawberry, 15 Fruit Loops, and some applesauce.  He threw up Tuesday night after trying to eat something and has been turned off to food ever since.  We have ordered him everything you can think of, but he just doesn't want to eat.  He is drinking a little better so that is the most important.
We have tried to get him sitting up and out of bed, but he cries that it hurts too much.  We finally had to do some tough love last night and made him get up.  After some coaxing and helping him see he could do it we finally had success and got him to the toy room.  This lifted his spirits a little.  It also got his chest drain tube moving.  We aren't sure if the drain found a pocket to start draining or if he is accumulating more fluid around his lungs, but his drain tube is draining almost triple today what it has any other day.  I am trying to stay positive, and not let this panic me.  The doctor's aren't too concerned, but aren't ignoring it either.  They will know more after his x-ray tomorrow morning.  Getting post-fontan kids up and moving is really important so fluid doesn't sit in their lungs and Logan has been very sedentary so we hope it will help now that he is up and moving more.
They have a Lightening McQueen car that got him out of bed today.  The physical therapist was adamant he try to walk.  He took a few steps and was pretty proud of himself.  We made it back to our room and he barely got back in bed before he was asleep.  It just exhausted him.
We thought he was on the up hill after seeing him play so well, but then he woke up and was absolutely miserable and required a "rescue" of morphine to get things under control.  Since then he has done better.
So we have good moments and hard moments.  Logan continues to be so sweet and polite to everyone, but is getting less trusting of anyone who walks in the room.  I really hope his x-ray shows improvement tomorrow and his drainage slows down.
I got a lot of pictures yesterday and today I will share.  I do this for my family that I know wishes could be here with us. 

First attempt at sitting up yesterday.

I am so glad someone else had to be the bad guy.

He stood up for like 5 seconds.

Our reward was a snuggle with mom.  I say our reward because this was the first time I really got to hold him.

 A trip to the toy room after we were transferred out of the ICU.

 

Keeping up on our oral hygiene

More snuggles this morning

Physical therapy again, this time we took a few steps.

He was so proud of himself, he wasn't sure he would be able to walk.

 

 The best pic of all he is SMILING for the first time since his surgery.

Exhausted after playing

Rested and right back at it.

 

On the receiving end...

I have been thinking for a long time about how to write a post to some how express and portray my gratitude and thanks for all that has been done for our family.  I still can't find the right words.

It is humbling being on the receiving end of others compassion and charity.  My heart has been so touched, and our lives made easier by others generosity. 

Thank you everyone for loving us, for praying for us, for helping us get here, for helping with things while we are away, for spoiling Ashlyn and Tanner.  It is fun talking with them every day and hearing the excitement in their voice about what a Secret Santa left them, or what an aunt has given them, or what crazy thing they have done to torture my dad.  I don't think they have had time to miss us yet!

We are so blessed to be surrounded by so many great people. 

 

My parents being at the top of that list of great people.

 

When we made the decision to come here to Philadelphia again, I didn't even have to ask them if they would take care of Ashlyn and Tanner.  They just started making plans of things to do with them to keep them distracted and busy while we would be gone.  They just stepped up and took any worry or stress about that away from Brad and I.
In preparing for surgery I was a stress case trying to keep Logan healthy.  Some would say I crossed over to the "crazy" side in this department.  But they helped out in so many ways watching Logan for me so I could teach my classes or doing my grocery shopping for me so I didn't have to take Logan out.  They were always there, and I am so grateful for them.

Again, we have been so overwhelmed with the out pouring of love shown to our family.  So many things that can be so stressful have not been because of other's generosity and love.
We have been touched and blessed with the true Spirit of Christmas this year, and it is a feeling I will never forget.
 It was hard for Brad at first to accept "help" from others.  Anyone that knows him knows what a "planner" and "do it yourselfer" he is.  This has been a lesson in accepting charity and allowing to be served.  He also has been so touched and amazed at the generosity and sacrifice of others.,
 I can't express what it means to me as Logan's mom to know how many hearts he has touched and how many people love him and care about him.  I wish I could share in detail about everything that has been done for our family.  We are so truly blessed, and I hope and pray those who have sacrificed for us will also be blessed.
 

Today's Plan

Notice anything different today?

 

 

We are on room air folks! 

They took off his nasal cannula early this morning and he is holding his own keeping his saturations at 87%.   

There is talk of moving out of the ICU today to the step down unit.  That would be great and would give Logan access to they play room.  As soon as they take his arterial line out he will be able to move around more.  His chest tube is still draining too much to remove, so it has to stay in for at least another day.  That is okay, we have learned you don't rush that.  He still hasn't been able to get up and walk.  He wants to, but when we try to sit him up it is too painful.  We hope to get him up today.  His poor little belly hurts and he is so backed up from all the pain meds that we hope to get that resolved too.  It is funny when he wanted to drink we had to hold him back, now he CAN drink and won't!

They say he is following the typical post-fontan trend so we will keep rolling with his timeline.

As hard as it is being away from home and my kids, it is so nice to not have anything other than Logan to worry about.  I feel so much less anxiety and stress not being pulled in different directions.  This hospital is familiar and feels like our hospital.  I know so many faces here and so many people remember us from last time.  I guess what I am saying is that is still feels right to be here.

I was able to be part of rounds at 2:30 this morning and again at 8:30 this morning.  All the doctors are on the same page and are so good with Logan and listening to me.  They listen to my input and let me ask any questions.  I was able to tell them how a particular pain med didn't work for him last time, they didn't even question me they took my word and switched to another option. 

 



Post-op Day 1

Last night was a long one.  I wasn't about to leave Logan to wake up to a stranger so I stayed bedside all night.  I tried laying down on a bed/couch in the room for the first part of the night but every 10-20 minutes he would call for me even if he was still out of it.  I ended up just moving to a chair right next to him and stayed there all night holding his hand.  He still has lines going directly to his heart so I was too nervous to lay right with him (and for half the night he chose to lay sideways in the bed).  They kept him partially sedated with meds and kept on top of the morphine so he rested. 
One of the hardest things has been denying him apple juice.  He has been SO thirsty, but he is fluid positive (meaning he has taken in way more fluid than he has been able to put out) so they have to really limit his fluid intake.  It is so sad having to try to distract him.  I can give him ice chips and he likes those, but he really just wants to guzzle a drink. He also has no appetite for solids.
Today they stopped the sedation meds and the milrinone so his heart is working on its own.  His blood pressure has been pretty random.  It was too low last night and then high today.  Same with his temperature.  His body is trying to figure out his new circulation, it will come with time.
He hasn't wanted to move much, but did ventured out of the bed to sit in the chair for awhile. That completely exhausted him. 
He has been such a brave kid.  I have been surprised by how cooperative he has been.  We hope to get some good rest tonight and if they can remove more of his lines tomorrow we will try to get him up walking around. 
The doctors and nurses say he is doing well.  I know every kid is different so I am trying to let Logan do things his way. 

 

Laying sideways

His sats hit 95 yesterday.  Today they have been hanging out about 90.  Can't complain.  We are anxious to see what how they do when he starts exerting.

How I spent the night

Trying to blow bubbles to get his lungs expanding

Hiding from the lights

 Sitting in the chair, he fell asleep before he could play the ipad!

Brad keeping up on work.

 

Thank you everyone for EVERYTHING.  We feel so much support and love from so many people.