Saturday, July 27, 2013

On the right track...

Jake has been doing great the past few days. He has been up and walking and we take wagon rides all day long. He is laughing, playing and just getting better and better everyday. We would have been home by now if it were not for the fluid draining. Andy had to go home today. My mom and Aidan decided to stay here so Jake and I wouldn't be alone. We also are hoping to be able to go home early next week so the car is here now and we can just all go together instead of trying to find a way for Andy to come pick us up.

They took out Jake's original chest tube this morning. The site was looking pretty yucky. He doesn't have any signs of infection but they will look at it Monday morning and if it has not gotten any better they may put him on antibiotics just in case.

No more Blake Drain.
He still has the pigtail drain that was put in for the pleural effusion in his right lung. The good news is the fluid is slowing down. Jake was draining about 10cc/hour and today it had slowed to 5cc/hour. Jacob's chest x-ray looked beautiful this morning. It was so much better then previous ones. When they have been flushing the line to make sure there are no clots they are not getting anything out anymore which is also a good sign that the fluid is stopping. They were afraid that the pleural effusion was becoming Chylous which scared me because that is not fun to deal with. It basically means there is fat in the fluid and the kids will have to be put on a strict low fat diet. That is not easy to do with a 3 year old but we would do what we had to. I just talked to a fellow and she told me his numbers were in normal range so they don't think it is Chylous. Praying that is the correct information. I will know for sure during rounds tomorrow.

I totally get the mom of the year award because I actually broke his chest tube today. Thank GOD it didn't pull out of his chest. Jake hasn't wanted to walk as much today. I think he is sore from where they took the tube out and we were up and walking a lot the day before.  I was making him walk and he was crying and reaching up for me to pick him up. I leaned down to give him a hug and then went to pick him up. As soon as I started to lift I heard a pop. I looked down and sure enough there was fluid on the floor. OH CRAP!The tube had gotten caught under my shoe. So I had the front desk call the nurse. Thankfully it popped between two sections of the tube. The nurse called CT surgery and they talked her through rigging it so it would still work until they could come fix it tomorrow. It is still draining but it can kink easier so I have been paranoid about it all night.

Broken tube. Nice job mom!

I am actually shocked Jake has not tried to pull anything off of him. He has leads all over his chest, bandages and the chest tube. He has to keep it covered. If you take off his shirt he says "Shirt" and if you lift it he pulls it right down. He also has to have the "No-No" on his IV. IF it is off he points to it and shows you to put it on. I think he just don't want to see the stuff because it upsets him. I am just thankful he isn't trying to pull it out. He is picking at his incision so we have been trying to keep that covered.

Physically Jake is great. Yesterday he climbed a big flight of stairs all the way up and down for Physical Therapy. He did it without any problems and didn't fuss at all. The physical therapist said he met all of the goals she had for him and he didn't need any PT anymore!

We also stopped by the playroom yesterday and participated in Music therapy. Jake loved it. He hit the drum, sang songs and played the shakers. He met a few new friends as well. During one of our many trips to the playroom we met a 14 year old boy named Tom who also has HLHS. He is such a cool kid and it is so great to talk to him and see how well he is doing. Jake didn't want to walk as much today but like I said I think he is sore. We took him on wagon rides all day. He wakes up pointing to it and saying "Ride". He LOVES the wagon. It also gives us a way to pass the time.

Music Therapy
Speech wise I am amazed at how much Jacob has improved. He has not had any speech therapy since we have been here but he is communicating so well. Tonight the nurse came in to check his vitals. She grabbed the blood pressure cuff and Jacob lifted his pants leg and said "This one". Then she grabbed the pulse ox and he pointed to his toe and said "This one" lol. Last she got her stethoscope and he pointed to his chest and said "Heart". I was so proud of him in that moment. First of all to be able to communicate with her but also because I would expect him to be scared or upset when he gets messed with, that is how he used to be. But instead he is being so brave and helping them. The other day a doctor was listening to his belly with the stethoscope, he picked it up and put it on her heart and gave her a look like she was dumb and didn't know where it went lol. I love him so much and am so proud of him. He is telling me when and what he wants to eat, drink, what movies he wants to watch and if he wants to get up and go to the playroom.

The best news of the day was that his heart echo looked perfect! His fontan pressures are just where they want them and everything looked great. So between the great chest x-ray and awesome heart echo I think overall today was a great day!

Brothers <3 i="">
High Fives!

Thank you for visiting Jackie and Julia!

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