Wednesday, July 24, 2013

We moved to STEP DOWN!!!!!

Today has been the best day! Jacob has made so much progress today I think my heart may explode!

I woke up at 8:30 to the surgical PA coming in to take out Jake's RA line. FINALLY that thing was coming out. I knew once it was out Jake would get up and things would start to get better but I had no idea he would do as amazing as he did. It was actually pretty interesting to see that they just pull out the line at the bedside. The RA line goes right into his heart. They just snipped some stitches that were holding it in and pulled it right out. They had given him some morphine so he would be calm but he barely flinched. When they took the line out his original chest tube bleed a little more than I liked, it worried me but luckily it quickly stopped. They said it is normal especially where it has been in so long.

We let Jake sleep off the morphine for about an hour or two and then it was time to get up! Occupational therapy came in first. They got him to sit on the edge of the bed then had him walk to a chair.

Ready to get out of bed.
I thought his legs would be super weak from being in bed all week but he did so well. He stood up by the chair for a while and then sat on my lap and played with puzzles and colored. Before today Jake would not do anything. What a difference getting out of bed makes!

When they were done, the physical therapist came by. She asked if we wanted to wait since Jake just worked with OT but he seemed like he wanted to keep going. She stood him back up and we walked around the bed to the other side.

Standing up for the first time in a week!
Walking for the first time.
Jake didn't fuss at all! I think he thought we were leaving because he started saying blankie, he wanted to make sure we didn't leave it lol. He walked around the bed and we put him back in it to rest


I thought he would pass out from all of his hard work but he stayed awake. Since he was still awake we decided to take a wagon ride around the unit. It must have been super exciting because half way through the ride he bent down and started to fall asleep lol. All of his hard work finally caught up to him.

A short while later we were told we were moving to the STEP DOWN UNIT! It is really just the other end of the hall but it is a huge step toward going home. The only thing still keeping us here is the fluid coming out of Jake's chest tubes.

We got all moved into our new room and Jake wanted to go on another wagon ride. This one lasted for well over an hour. Every time we got back to the room Jake would point to the hallway and say "More Ride!" A good friend of ours from home sent Jake a baseball to have his care team sign so he would have a keepsake from his surgeries. I thought that was such a great idea! So during our ride we visited some of our favorite doctors and nurses and got their autographs. They loved the idea too. Thank you Michelle, Pete and Jacob. Our ball is almost full of signatures already!

It is really good for his chest tube drainage to keep him sitting up so we kept on strolling around the unit for a while and then we decided to bring Jake to the playroom. He had fun playing with a racetrack they had. Aidan was mad he couldn't go but this playroom is only for patients. I told Aidan that he had a lot of toys in Jake's room. He replied with "It is not fair, being a big brother is really hard work. I work just as hard as the doctors and I should get to play" lol. Seriously this kid is a handful. He eventually understood. This stay has been hard on him. He is 6 and is bored, can't blame him.

It is no small task getting Jake out to play. It is not easy maneuvering around those chest tubes! He has the one tube which is just a small tube with a bulb at the end. That isn't so bad. The other one that they put in for the right lung is the complicated one. It has a huge box at the end of it which keeps track of the drainage. We can't lift Jake under his arms for 6 weeks because his chest bone is healing. So we have to scoop him up under his butt kind of like a baby. So I scooped him up while Andy made sure the chest tubes were not getting caught and carried the huge box. I stood him up and he walked over to the toy. He played for about 20 minutes and then we decided it was time for a break so we went back to our room.

All of the energy he was exerting must have made his appetite come back because he was eating all day long. He went from saying no to everything and anything I would show him to wanting everything. He ate almost as well today as he does at home. It was truly amazing. Really the only thing keeping us here now is his chest tube drainage. The original tube has slowed down a ton. It is barely putting anything out tonight. I wouldn't be surprised if that comes out soon. The other tube however is still putting out a lot of fluid. Getting him up and moving will help get all of the fluid out but please pray it slows down soon so we can go home! There is really no way of telling when it will stop. Some kids only drain a few days and others can drain for weeks to a month. Only time will tell. Jake also did not need any pain medication all day. I think he got maybe two doses of tylenol today, no morphine during the day. We did give him a dose of morphine tonight around 10pm because he was saying Owie but that is not surprising since he was up and moving so much today. Still huge progress that he didn't need it all day.

We had a bunch of visitors today. Aretta Straw a fellow heart mom, dropped of some gifts for the boys. We didn't get to meet them because Jake was having his PT and I couldn't leave but the boys love their gifts. Thank you Aretta! Christa and her two little girls also stopped by. I think I mentioned on here before that her daughter Gabby was having her Fontan when we were here for Jacob's first open heart surgery. Jake was still tired so we went and hung out for a bit on the bridge (hallway that parents hang out in and visit with friends and family). Daddy stayed with Jake while he took a nap.

A little later in the day we had a very special visitor. A 21 year old HLHS survivor named Chelsea Schnell and her mom stopped by to see Jake. Of course he was asleep the whole time but it was so awesome for me to be able to talk to her and see how great she is doing.

Chelsea with Jake.
 I asked a million questions and she was nice enough to answer them all! She lives in Philadelphia and goes to college here. Dr. Norwood did her surgeries here at CHOP 21 years ago. She doesn't remember any of her surgery stays which is the great thing about them being so young. Hopefully Jake wont remember any of this either. She is living a very normal life and you would never guess she had HLHS. I can't tell you how amazing it is to see how good she is doing and know that one day that could be Jacob, just living life and thriving.

You can click here to visit Chelsea's blog

A few of her YouTube Videos:

RECAP of today:
  • Jake has been eating a ton and barely retching. 
  • The RA line is finally out
  • Jake has walked, played and been up most of the day
  • Still draining quite a bit from the right chest tube, the other is slowing down
  • We moved to Step Down! 
We had an amazing day. Tomorrow PT is going to have Jake walk around the unit. Please continue to pray for Jacob, especially pray that his chest tubes start slowing down so we can get out of here. Other than the fluid Jake is ready to go. I am hoping we will be home by next week but of course we are on his schedule so it will take as long as it takes.

If you could also pray for a little girl here named Valentina. I have hung out with her parents quite a bit during this stay. They are a wonderful family. Valentina is 5 months old and just had her Glenn (Second open heart surgery). She has had some complications and has been having a rough few days. Please pray the doctors can get everything worked out so she can get better and go home soon.

I better get some sleep, I have a feeling tomorrow will be another active day.

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