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)!

1 comment:

  1. Seriously that is a huge milestone! I'm so happy for you, your son, and can only imagine how you must feel. I've been following your blog since right before you went in to the hospital and have seen what a strong boy you have and what a wonderful Mother you are, Heidi!