2 weeks post op

 Gabe is doing great 2 weeks post op. He’s off all medicine and hasn’t even needed any Tylenol since Sunday. His scar has scabbed over and is definitely healing and looking better.  He is learning how to maneuver his body differently. For example, he can’t bend over and pick something up off the ground. He can’t arch his back in any way. Previously Gabe would get dressed by laying his clothes out on the ground, putting his feet in his pants, then hoisting himself up to stand and pull them up. Now we have to teach him to sit on the edge of his bed and cross his leg over his knee to get his feet in his pants and then stand to pull them up.  He has trouble pulling his pants down all the way. He has trouble soaping up the lower half of his body in the shower. All things he  needs to relearn because his mobility is a bit restricted. We’re not sure if it’s stiffness or just limited mobility b/c his back moves in a straight plane now. We will be meeting with OT and PT after he sees the doctor in about two weeks.  Until then, we will keep building endurance with him. He’s made the walk back-and-forth to the mailbox multiple times now. We walked a bit further down the street earlier this week and he made it about halfway. We’ll keep trying to go a bit further everyday. Thank you all so much for all the cards and goodies! It’s been a wonderful highlight of Gabe’s day.  We all enjoy reading them.

1 week post op

 I caught him mid laugh. 

Gabe is doing good. Finally have a little bit of the bathroom stuff under control. His stomach hurts at times, but otherwise pain has been under control too. His posture is a bit better when walking. He’s doing the OT activities the best he can to help with shoulder and neck movement. He’s tired a lot, napping about three times a day. Healing takes energy. We start his medication taper today so we’ll see how he does as we back off on things.  I took his bandage off today. His scar is massive but looks good. I had to reinforce one spot and he still has to hold off on showering till I talk to the nurse about it tomorrow, but I’m pleased with how it’s healing. Gabe’s surgery was one week ago. I’m in awe with how the body heals and adapts. It really is amazing on how far he’s come in one week. I talk very freely about pee, poop, pain, wounds, etc. It’s the nurse in me. I’m constantly assessing him to get an idea on how he’s doing since he may not have the communication to exactly articulate it. What I’ve not done is posted some of the harder pictures. We are willing to share those though if anyone’s interested. I just don’t want to do it on a social platform, even with privacy settings. If we’re in person and you want to see a pic from ICU or a pic of the incision, feel free to ask. Seeing those from other parents who’s kid had gone through the same surgery was quite helpful in preparing.

What we need:  cards! Send all the cards. Silly ones that play music, have dogs or babies on them, fart jokes, or animals with googly eyes. Send us all the cards!  Don’t know Gabe that well, but love following his story? No problem… send him a card that just says “good job” or “we’re cheering for you”. My plan is for Gabe to walk outside and check the mail every day as part of motivation to move. I think he’ll totally get into it  

Enjoy the long weekend! Thank you friends! 

Home

 Home. Gabe finally went to the bathroom a little bit yesterday afternoon so we got discharged late yesterday evening.  He was in a fair amount of pain when we got to the house because it was the most movement he’s done by far between getting out of the hospital and getting into our home. We got him tucked in just fine and he fell asleep immediately.  Today was focused on bowels and bladder. I’ve been on the phone with the nurse a lot today.  We have a plan going into the holiday weekend, which hopefully does not involve a re-admission. Hopefully his body cooperates and the bathroom stuff improves.

  From a mobility standpoint, he’s doing great! He’s going down and up the stairs with support. He’s been walking around just holding our hands lately. We’ve been doing some OT exercises with him to keep his neck and shoulder range of motion in a good spot. The surgery fixed the skeletal structure, but the muscles are still used to being slanted so he is still a bit lopsided. It will correct overtime as he gets used to new posture.  We are tracking lots of medication and Gabe is taking it like a champ. They were right when they compared it to having an infant. He really is a champ though. Once we get the bladder and bowel stuff under control, it’ll be a huge step forward.