The Journey of a Sweet Little Boy and His Special Heart

Monday, January 24, 2011

Finding our new Groove

I have sat down to type an update 20 times now, but keep getting distracted.  I have to do silly things like dishes and laundry now that we are home (I guess that is one benefit to living at the hospital- I never had to clean up after myself or anyone else!)  We are adjusting, and of coarse love being home.  I find myself saving the diapers for the nurses to weigh, and wake up in the mornings wondering if I have time to brush my teeth before the doctors come for rounds.... then I realize even though I am still not sleeping in my bed (I am on Logan's floor) we are still at home!
Oh, it is great to be home!  Where do I start.... Most importantly, Logan is doing so much better.  He is eating non-stop and smiling all the time- two things he hadn't done for the last week in the hospital.  It was a fun reunion with Ashlyn and Tanner.  They were asleep when we got home, and slept through all the kisses and hugs we gave them.  Saturday morning they were a little dazed when they saw us, but so excited.  They have wanted non-stop attention since we got home so it has been a bit of a challenge giving Logan the care he needs and entertaining them, but it is great.
Logan's last X-ray and Echo done Thursday at the hospital looked great so we started making travel arrangements- got the oxygen for the airplane overnighted, booked a flight etc. And then Thursday night his labs came back showing his potassium and sodium levels were too low.  ARGGG.... we forced the nasty tasting potassium and sodium down his throat all night (they are horrible tasting) and had labs drawn again Friday morning.  The levels were better, but still not where they wanted them.  I was so worried they wouldn't let us come home.  I assured them we had a hospital 5 minutes from our house and we could go back for labs that night if we needed to.  They agreed that Logan needed to go home too so they discharged us Friday afternoon in time to catch our 5:00 flight.  YIPEE!  The nurse couldn't believe they were discharging us on so much medication, but everyone agreed Logan needed to go home to start feeling better.  And he started eating and acting happier the minute we left the hospital.
He is still on Morphine around the clock, but we are slowly weening that.  And then of coarse is still on Tylenol, diuretics, potassium and sodium (we are hoping to drop those today).  His pain seems so much better now.  We are able to stretch it 5 1/2 hours between pain meds instead of every 4 hours (and have come down on the dose).  And we took him in for labs this morning so I am waiting to hear if I can stop the potassium and sodium.
Getting the oxygen figured out has been a bit of a challenge.  We had Praxair here 4 times this weekend.  After a machine that needed service, another one that smelled like an ash tray, needing a pediatric flometer and humidifier- we are finally figuring it out.  As long as we stay upstairs it really isn't too bad, but taking him downstairs is an event. 
We are slowly figuring out our new "normal."  I have no idea when I will be able to make it back to the gym to teach my classes ( I am hoping soon), but as for now I sleep with one eye open and don't go far from my little guy. 
Thank you everyone for following Logan's Journey.  I know you have all prayed, cried, and rejoiced with us along the way.  We have had so much support and love.  Thank you.  I can't explain how it feels to see him smiling and happy again. 

Packed up and ready to leave the hospital.  He was excited to be in his car seat again.
 Did I ever tell you about the security at the Hospital?  We had to pass through no less than 6 security guards to get to Logan, and to get to the parking garage was a joke.  After a month I still couldn't remember how to do it (granted I didn't leave very often)!
 Snoozing at the airport. 
The flight and everything went surprisingly smooth.  Yes, we were on the very back row of the plane, but we were coming home so who cares... nothing could have gotten our spirits down.
 Ashlyn and Tanner kept calling us Grandma and Grandpa on Saturday.  It was pretty funny- they have quite a bond now. 
 Look at this new kid... this is after being home for one day... all smiles and playing.

 Our little Rockstar!


  1. Logan looks great! His color looks better already. Keep up the good work mom and dad (and, of course, Logan.)

    Security at CHOP, funny. I guess I just had a "don't mess with me" look on all the time and no one bothered me :)

    Glad the pain meds are already being weened too.

    We'll be checking on Logan but know how very hard it is to update blogs while caring for the little ones.

    Take care,

  2. That is so great that you were able to come home and that he's doing so much better! I'm sure it's a big relief to see him smile again.

    Cindy Green

  3. What a cutie! It's so fun to see him with those big smiles and getting plenty of love and attention from Ashlyn and Tanner. I bet you guys are so happy to be home again, too.

  4. I'm so glad you're home!!! What fantastic news! You will settle into your new normal before you know it. It's crazy how oxygen, feeding tubes and therapy is so normal to us now. We're getting ready for a tricuspid repair at Stanford on the 8th and then hopefully the fontan will follow in July.

    Give Logan big hugs. He really looks great!!

  5. Heidi, glad Andrea commented, I was just gonna tell you she is the queen of O2 ! So happy you are home 9by the way tell your Mom and Dad hello from my Mom and Dad. Please tell me you are atleast on a air mattress on his floor ;) I am a sucker for the cute blue lips, especially when they match their cute blue eyes. I'm funny that way. So happy you are home!

  6. "rejoice" is a fitting word for right now.Take care!

  7. YAY!! He looks SO happy and so much better than the hospital. Take your time at home, although we all love and miss you terribly there are lots of germs at the gym and we'd rather have you and Logan healthy than have you back at the gym!! Take care and keep us between 'life' that is :)

  8. Thanks for leaving a comment on my blog. It was very interesting to me to read your updates after your son had the Glenn. Every single post reminded me of our journey with Kyson. Sometimes I felt so alone at that time (I didn't know hardly any "heart Moms" yet) and I was so worried and concerned. Now I am so grateful to have found so many wonderful friends in the heart community. Anyway, I just wanted to say I'm so glad you are home and he is thriving there. What a journey it is to have a child with CHD! I can honestly say I am so grateful that I do because I learned so much and have grown so much through the experiences we have had together. These kids teach us to appreciate life and be better parents.

  9. Awesome pictures, Heidi! Logan is beautiful, and it's so great to see him not quite so "hooked up". Hang in there, and don't hesitate to ask if I can help with anything.