Life post-fontan

I picked a few pictures to sum up the last 6 weeks.  I haven't been blogging because we have been living!  I was told we would get to a point where life feels almost "normal," I have decided that life is normal and we will live each day the best we can.  Logan is doing great and we will enjoy the good days as long as we can. 

 

Shortly after we returned home a cute girl in my neighborhood came to visit Logan and brought all the kids a gift.  She told me her boyfriend had read our blog with her and had been through all these same surgeries.  She brought him over for a visit the next week, and he was so kind to let me badger him with questions!  He brought us HOPE.  Talking with him made me realize Logan CAN live a "normal" life and he can be happy.  Thanks Megan and Troy! 

Logan and Troy

 

We had a great snow storm the end of January, and this was the first time Logan was really able to play in the snow.  I usually hate the snow.  Most of the time I watch out the window wrapped in a blanket while Brad plays with the kids!  This time I dropped the kids off at school and Logan and I played and built Olaf together.  It was a good day.  I think we were able to stay out for over an hour without lips turning blue and him not getting totally exhausted.  (P.S. we only took the gloves off to stick the eyes and carrot in, he was wearing gloves).

 

 We were blessed with some really warm days in February (unusual around here, but we will take them)!  Logan and I were out running errands when I realized we were driving past Wheeler Farm.  I flipped a U-turn and asked Logan if he wanted to go visit the animals.  (That is so not like me to stop and do something that is not "planned").  It was the BEST afternoon.  I wouldn't wish a sick child on anyone, but I will tell you it has taught me to cherish every day.  I stop to make memories because I just don't know how long I have to make the memories.  I really try to not get caught up on the what ifs and worse case scenarios.  But I am not naïve either. 

Not having to carry around an oxygen tank really broadens our horizon.  We can do so much more, and to see him be able to walk on his own and climb and play just warms my heart.

Playing at the park with his buddy, Samatha... I tell you folks we are LIVING.

 

In other news and progress... Logan is now fully potty trained!  HOORAY!  Once he decided he could do it, it was a piece of cake and he hasn't looked back.  He is eating a little bit better and has put on a little weight.  And Ashlyn got him to throw his binky away the other night ( I will do a separate post on that).  It was a BIG deal!  He has grown up so much, and is happy and doing great. 

Good News

Do you want to hear the BEST news ever....

I no longer have to lug a 4th "child" around (aka oxygen) everywhere we go.  Can you tell by the picture that I am more than ready for the company to come pick up all their stuff?  It is by the front door waiting for the truck to haul it off.

Logan has been on supplemental oxygen at night since he was 8 months old, and been on it full-time for almost the last year.  This is such a BIG thing for all of us.  Logan loves not having a cord to worry about getting stuck on things, he can go up and down the stairs as he pleases, and he can hide from me now without a cord leading me right to him!  I love not lugging it around, but I will admit I miss the leash.  He has never had to learn to stay by my side because he always had to (well he never had the energy to walk anywhere so he was always carried or in a stroller) so now that he can walk he runs away.  Our power bill will be a little less scary too now that that beast of a machine isn't running 24/7!

His doctor's appointment on Tuesday was fabulous.  His doctor was almost at a loss for words at how good he looked (he has only known Logan on oxygen).  He just kept patting his head and saying, "You just look so good."  His x-ray was clear, his oxygen saturations were 95-97% and his blood pressure was good also.  He told us there was no need for oxygen, and that he just needed to see Logan back in 3 months.  His heart rate is a bit on the low side and his doctor will keep an eye on that with 24 hour holter monitoring in the future.  But he does look GREAT.

Physically, he is healing well.  We are coming along with the emotional side of things, but it feels slower.  His doctor was concerned that Logan weighs the same now as he did 7 months ago (maybe a little less).  Eating is his power struggle, it is something he knows he has control of and so he chooses not to eat a lot.  A father of a child asked me in the hospital if Logan had a feeding tube, I said, "Yes, it is me." Meaning any food that goes in his mouth I have to usually put it there.  He will go all day without eating if I don't put it in his mouth.  I have tried the let him starve so he will eventually eat approach, and he will choose to starve.  With being on diuretics and stuff I can't let him starve... so I continue to find ways to get him to eat.  Any ideas?  I have tried letting him pick the food, making fun shapes out of it... you name it, I have tried it.

The morning of his doctor's appointment when I was getting him dressed he asked me where we were going.  I told him we were going to the doctor.  He immediately started crying and saying he didn't want to go.  He got completely irrational, saying "no I don't like hospitals and shots and doctors"  It was so sad.  Then when my mom got to our house to get Ashlyn and Tanner that sent him into another panic about leaving them.  I think he thought he wouldn't see them for a month again.  He cried in the car for 20 minutes for his Tanner and his Ashlyn.  If I knew it would have upset him so much I would have made it so they could have come, but we had to go downtown to Primary Children's and you never know if it will take 1 hour or 4 hours.  We all talked him through it and promised he would see them that afternoon, but holy cow it was heart breaking.  I think all of us were trying not to cry.  He had a great nurse that saw how frightened he was and instead of just pushing her way through she actually sat down next to us and showed him how she was going to do things so it wouldn't hurt him.  She was wonderful.  And he made it through and was so happy to go pick Ashlyn and Tanner up right after we left the hospital. 

 

 

I have been getting the "what now" question or the "are you going to be normal now" question now that he is doing well and this surgery is behind us (Brad says I will never be normal)!
Yes, surgery is behind us and he is recovering well, but he is STILL recovering.  If he were to get sick right now it would be extremely hard on him.  When he gets colds and things in the future he will most likely still require supplemental oxygen (Brad and I bought some tanks to keep on hand for emergencies).  I hope he gets to a point where I don't have to be so paranoid, but we will always have to be careful.  He functions on 1/2 a heart so any illness will be harder on him than most everyone else.  So for now we are still laying low and trying not to go out much.  It has been such a blessing having Ashlyn and Tanner off track.  First, he has loved spending every minute with them, and second I don't have to worry so much about all the germs coming home from school. 

 

So there is our good news; a good report from the doctor and no more oxygen...

but PLEASE still keep any yucky germs to yourself (and no I will probably never be "normal" again)!



Catching Up

Since being home it feels like we are catching up on everything we missed.  We celebrated our family Christmas Thursday morning to let Logan open up his stocking and things Santa brought him to our house.  The kids also kept some of their presents under the tree from Brad and I to wait and open when we got home.  It was a lot of fun.

Logan was positive Santa would bring him a remote control Dusty Crop Hopper

I don't know what I was thinking when I bought this for Tanner!

 

We had our New Year's tradition of scones and bacon today for dinner.

 

We have been catching up on play time. The kids are inseparable.  Logan loves having 2 friends to boss around, and they don't seem to mind being bossed around.  Ashlyn and Tanner have been wonderful.  Ashlyn is very protective of Logan and makes sure he gets safely up and down the stairs, and has anything he needs.  Tanner is Logan's new night security (gives me a break sometimes).  Logan has wanted Tanner sleeping in his room with him every night, and Tanner is more than happy to do it.  When I ask Tanner where he wants to sleep he will say, "I will do what Logan needs me to do."  Then Tanner will just come and get me when Logan wakes him up crying for Mom.  He has been so sweet (thank goodness the kids are off track and get to sleep in).  We have loved playing all the kids new Christmas games with them, and we are catching up on lots of snuggle time.

(Don't let the oxygen scare you, he had just woken up and has been wearing it when he sleeps)

 

Brad is catching up at work... I am sure this will take some time.  He also took down and put away Christmas all by himself while I was out with Ashlyn and Tanner yesterday (it was so nice).

 

I am catching up on laundry (oh wait, when are you ever caught up on laundry),sleep... that is something I haven't figured how to catch up on, the treadmill, and getting control of the house. 

 

Logan is catching up on playing, walking, running, toys, NOT eating, and still being the president of the house.

BUT... we are catching up, and it almost feels like we were never gone.

 

Logan has an appointment with his local cardiologist Tuesday morning.  This has been a source of stress and frustration since we returned home.  Our doctor in PA called and talked to our local doctor last Tuesday right after our appointment and I also called and left him a message that day with some questions.  It took him until Friday night to get back to me.  To say I was a stress case is an understatement.  I was so worried about if Logan needed to be on oxygen here at elevation, and when he needed to be seen again etc.  I asked our great group of heart mom's and everyone's kids were on oxygen after the Fontan to help with recovery so I was really stressing out about this.  I hope we can get our transition of care figured out and feel like Logan is getting the attention he needs here at home.  He is on oxygen when he sleeps just for the next little while, and I guess we will re-asses that on Tuesday.  His saturations have been holding steady at 93% here at home.  We are thrilled with that.  He has his good moments and hard moments still.  He isn't eating very well, I hope this resolves the further we get away from surgery.  He is still terrified of us touching anywhere near his belly and chest (he still has all the sticky residue on him from his bandages, but I can't get near him with any kind of remover without him completely freaking out) so it just stays on. 

 

I still feel like I am in sort of a haze and haven't fully let myself feel the relief of being home and done with surgery.  Hopefully after his appointment Tuesday I can find that relief and start to believe that things really can be good!

HOME

We are home!  It was a joyous reunion with Ashlyn and Tanner.  Logan couldn't wait to show them his strong muscles and how fast he could run. 

IT

FEELS

SO

GOOD

TO BE

HOME!

 

Now the challenge comes in getting out of the "survival" mode and back into the living mode.  We will transition slowly.

Ready for 2014 and Homeward Bound

2013 wasn't a bad year by any means.  But I am ready to have this month behind us (and everything that led up to this month).  I am excited for what 2014 will bring for our family and this little boy of ours with his new found energy.
Dr. Rome gave us the clear to fly home tomorrow.  We were nervous because his appointment took forever.  As we waited for the doctor I really didn't know what I would do if they re-admitted us.  It is strange how you just deal with whatever is handed to you, but I really think I would have crumbled if we had to stay here another day. 

I have a lot of respect for this man and equal respect for his wife.  His wife was the attending physician on the floor when Logan's lungs collapsed.  I was reminded today again that Logan truly had angels watching out for him.  It has been a hard thing for me to process that his surgery went well, but in something so simple as a chest tube being pulled we could have lost him in minutes.  It's a good thing I didn't understand everything that was going on at the time.  I was worried Logan wasn't getting enough oxygen and that they would have to intubate him.  Really the concern was that Logan would go into cardiac arrest at any moment.  With the Fontan anatomy the ONLY way for blood to reach the heart is through the lungs because they have re-routed the arteries to bypass the heart and flow to the lungs.  By having his lungs collapse there was no longer a pathway to his heart.  I get the sense everyone is amazed at the true miracle it was that Logan did as well as he did and doesn't have any lasting effects from it. 
I am still a little nervous about coming home.  We have checked with every doctor about flying home and they all say it is safe.  But I will be a nervous wreck I am sure until we are there.  And then Logan adjusting from sea level to altitude is another thing that worries me. 
I am so happy to have the Fontan behind us, but I can't say it has lessened my worries and anxiety... YET.  I know that will come with time.
I am looking forward to celebrating the New Year with my entire family together. 
Goodbye Philadelphia!

Getting Out

Our goal today was getting out while at the same time making Logan take it easy!  The second we walk out the door of our room here Logan says, "Put me down so I can RUN!" and then he goes flying down the long hallway.  My goal is to get it on video, but I am usually running so fast to make sure he doesn't get on the elevator alone that I don't have time for pictures.  He has been complaining his chest and back hurt so I know he has been pushing himself, but it's like he just can't help but to run.  We would have loved to just get out and walk outside today, but it was cold so we went to the mall to just have a change of scenery and get out and walk. 

I am still ultra-paranoid about germs.  I can't imagine how much it would hurt Logan to cough right now or how his lungs and heart would handle a cold.  He is a good sport and doesn't mind wearing a mask.  We just window shopped and he loved the change of scenery too.

We got him his favorite pretzels for lunch.

And went to see Frozen again.  I could have watched Logan's face the entire movie.  I think he liked it even more the second time.  He would get so excited when the songs came on that he knew.

All tuckered out!

He has elevators all figured out and is the only one allowed to push the buttons.

We ventured back out for dinner tonight.  The thought of another casserole made us all a little nauseous.  So we walked a block in the freezing cold to Chilis.  Logan loved it as you can see!

 

 

We are anxious for his appointment in the morning.  He seems to be on the mend and we don't see any obvious reasons they shouldn't give us the go ahead to fly home. 

I am still trying to figure out how Logan is processing this whole thing.  He did so much better than I thought he would in the hospital.  He didn't ask go home and he didn't have the response to doctors that he usually has.  He would ignore them for the most part and let them listen to him and look at his ouchies.  Now that we are out of the hospital it's like he has woken up from a daze and he knows what is going on now (almost like he chose to not be completely present in the hospital).  He asks to go home all the time now and when Brad and I try to check his bandages he freaks out if we even try to lift his shirt.  Tonight I was just simply trying to get a sticky residue off his hand and he was so frightened I stopped and just held him.  I just had a gauze pad, but it must have been just enough to remind him of the hospital.  It breaks my heart.  I can't imagine how a 3 year old processes all of this. 

 

Hoping for a great appointment in the morning so we can come HOME, a little dose of Ashlyn and Tanner will do this boy some good (and his mama).  It's been a LONG  3 weeks away from them.

Heart Family

This "heart world" as we call it, is a strange thing.  It brings complete strangers from completely different walks of life and different parts of the country together, and creates a bond that can't be explained.  You really feel sort of a kinship with families that know your struggles.  That have been in your shoes, and that just GET it. 
I wrote this post back in 2011 about our friends the Jackleys that we met here in Philadelphia three years ago.  Lots of time has passed, but we have stayed in touch.  They said they wanted to spend time with their "family" on Christmas.  We were lucky to be that "family."  They were so incredibly sweet and generous to spend their Christmas making ours a little brighter.  They spoiled Logan with more presents (he LOVES unwrapping gifts) and they brought us dinner that lasted us for 3 nights.

The Jackley clan with Logan

Stacie and I with our sweet boys 3 years ago.

Now look at these boys.... they are our miracles. 



 

We loved the Christmas visit.  We thought that would be our only chance to see them, but with our crazy set back the day after Christmas earning us a few more days here we got a chance to see them again yesterday.

They were kind enough to open their home up to us.  It was so nice to be in a HOME.  Not a hospital, not a "hotel" room.  It is crazy how different a home can feel. 

Logan LOVED it.  He was in heaven and loved playing with friends (as much as he loves mom and dad's undivided attention I think we are getting old)!

 

Thank you Stacie, Tommy, Kaylin, and Kellen

FREEDOM

It really happened, we walked RAN out the doors of the hospital today. 

 We really are on the roller coaster ride of our lives.  Up, down, up, down... we are appreciating the upside right now!  Crazy to think Logan recovered so fast from 2 collapsed lungs on top of everything else, but his last 2 x-rays showed his lungs were great.  Dr. Spray said he is completely confident that his lungs collapsing were solely a "mechanical" thing from the tube being pulled and that his lungs are recovering and strong.

Logan wasn't sure what to think when I told him we could leave.  At first he said he didn't want to.  And then when they took out his IV and took him off all his monitors he understood that he really could LEAVE, and he started running and didn't stop. LITERALLY.  He has never walked the distance he did leaving the hospital in his ENTIRE life, and he not only walked he RAN most of the way.  It is a moment that will be stamped in my memory forever. 

We almost lost him to an elevator!  He surprised us and ran so fast in front of us and walked into an open elevator.  We barely made it before the doors closed!  Scared me half to death.  We are so used to having him attached to an oxygen cord/leash! 

A view that probably doesn't mean much to anyone but Brad and I, but the distance of this hall would have been like Logan trying to run a full marathon before this surgery, and today he ran all the way down it without even getting winded. 

 

FREEDOM

 

Logan has felt it.  He knows it.  He keeps trying to escape from our room at the Ronald McDonald House to run some more.  We have had to force him to rest because he has already over done it.  I have a feeling he is going to be hard to keep up with now.

We are watching him close and will stay in town for a few days.  We have an appointment Tuesday morning and if things continue to improve and look good we will get the thumbs up to come home. 

 

I have so many pictures to post of Logan making the rounds this morning to tell everyone goodbye.  I will get to it sometime this weekend.  I feel so emotionally drained.  We got to our room here at the RMH and all three of us were asleep within minutes of dropping our bags.  I can't tell you how nice it was to lay on a bed and have some privacy!

Thank you everyone again for your love, support, and prayers.  Although we are so far from home we have never felt alone in this. 

1 in 100,000

Bi-lateral pneumothorax from a chest tube being pulled happens in about 1 out of 100,000 cases.  Logan was that #1 yesterday.  And from the sound of it maybe the first in this hospital (at least as long as those working here can remember).   He has caused quite a ruckus around here.
Yesterday was a really, really hard day.  Today as we process everything it is a little surreal to learn more and find out just how scary things were.  If I could have taken a picture of the hall lined with doctors waiting for Logan and then the doctors waiting in his room, it was completely organized chaos.  It was the scene you watch from the sidelines and pray for that poor family, never thought we would be that family. 
They placed the new tube in Logan and were able to drain the air bubbles immediately and his lungs responded very well.  They stabilized him all day in the ICU and then let him go back to his old room that was familiar and more comfortable for the night.  We had the most thorough, organized, OCD nurse I have ever met last night (that was probably not an accident).  She had her eyes glued to every tube, chord, and hose hooked to Logan.  Brad and I took sleeping shifts.  He laid with him while I slept and then he went back to the Ronald McDonald house in the middle of the night and I got to snuggle up next to him.  He was absolutely miserable yesterday.  After they placed his new tube he refused to move a muscle.  He wouldn't even move his head once he found a position he was comfortable in.  They wanted him to get up and move around so he could breath deep.... yeah right.  He wouldn't eat or drink let alone let anyone near him to touch him and make him move.  He was miserable.  He was scared, and I am sure just plain sick of pain. The doctors back in the CCU (step down unit) were a little more sympathetic than the ICU docs.  In the ICU they were barely giving him anything for pain because they wanted him moving not just sleeping.  When we got back to our room and the doctor here saw how miserable he was he let the nurse give him morphine through the night to help him sleep and relax.  I went to bed feeling so defeated.  Like we were starting all over in the recovery.  Just the day before he was playing with toys and one day away from discharge and now he wasn't eating or drinking again and was in so much pain.
This morning a new person from the surgery team came to talk to us and said Dr. Spray had looked over his morning x-ray and numbers and wanted the tube pulled.  This surprised us because we were told yesterday it might need to stay in 48 hours.  Dr. Spray said he was confident that is was only air bubbles that caused the lungs to collapse and that no damage was done to the lungs themselves (like a tear or hole in the lungs).  We wouldn't let her touch him until we had talked to the attending on the floor and she called to confirm with Dr. Spray.  Everyone on the surgical team is walking on egg shells around us now.  I made myself VERY clear about our feelings of how things happened.  Unfortunately I know things don't always go perfect.... it is just when it is your child it is hard to not want to blame someone.  I will say this though.  The team of attending doctors were ready for anything, and they took care of a scary situation without panicking us (even when they were all a little panicked).
So they pulled the tube this morning.  They gave Logan some versed (a medication that gives you a little bit of an amnesia sensation so he won't remember it) and he was like a new kid.  He would finally sit up and he started acting all funny and loopy from the med. 
What a freaking ROLLERCOASTER ride.  Logan is done with the hospital.  He is done with ouchies and meds and tubes and chords.  I think now that he no longer has any tubes in him they might discharge us to the Ronald McDonald house tomorrow (it is less than a mile from the hospital).  And then we can come in for follow-up before we come home.

To show just what a rollercoaster ride these last 3 days have been all these pictures were taken in a 48 hour period.



Playing great on Christmas

  Racing through the hall on McQueen Christmas night

The morning of the 26th. 

They were actually surprised at how good he looked for what was going on inside.  This is usually the problem with Logan, he doesn't show on the outside the absolute chaos going on inside of him.  I know people will comment all the time that he doesn't "look" sick. (Me on the other hand I know I look like a wreck, I didn't even have a chance to brush my teeth before all this happened.  Why they do everything so early in the morning at hospitals is beyond me). 

 The team was all scrubbed and ready in his ICU room.

They let me hold him until the last possible moment, and then they let us wait outside the door.  They didn't fully sedate him because they needed him to be able to breath on his own.

Such a drastic change in such short time.  He was so miserable.

We tried to get him to blow bubbles or the wind mill, but he just was not having it (I didn't blame him).

I left his side long enough for a shower yesterday, and as you can see he wasn't about to let me leave him more than that.  He had a grip and wasn't letting go.  He would wake up screaming or thrashing if one of us wasn't in the bed with him.

This morning after the tube was pulled he sat back up and played with a punching balloon.

And then got really loopy from the meds and couldn't sit up on his own anymore.  He just tipped right over!  As you can see we were watching him close and anticipating this.  We had protected him with pillows on the hard bed rails.

By the afternoon he was back to the playroom trying to play video games that Brad and I have no clue how to play.

 

What a ride we are on with this little boy.  We aren't joking when we say Logan likes to do things his own way.

I have tried to find something positive to make of this whole situation.  Here is what I have come up with...

1. Logan is an amazingly strong little boy who continues to just keep everyone on their toes,, and likes to leave an impression.

2. I really feel like the Spirit works through people in different ways and even if I didn't recognize it at the time, I know it was our Heavenly Father that helped us know something was wrong yesterday and we got it taken care of in the fastest time possible before it caused permanent damage.

3. Logan told a world renowned surgeon to move out of his way (When Dr. Spray came into the room he stood in front of the TV that Logan was watching.  Logan got mad at him and told him to move).  The entire medical staff said Logan is the only person that could have gotten away with telling Dr. Spray what to do.
4. Prayer works. In all the chaos I sent a quick text to our parents and my sisters to pray.  I know they had anyone they knew praying for him.  We felt those prayers.

5. He continues to be our miracle.