The Journey of a Sweet Little Boy and His Special Heart

Monday, March 10, 2014

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 na├»ve 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. 

Thursday, January 9, 2014

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)!


Sunday, January 5, 2014

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!

Thursday, January 2, 2014

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.

Tuesday, December 31, 2013

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!

Monday, December 30, 2013

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