The Journey of a Sweet Little Boy and His Special Heart

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


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