Thursday, July 25, 2013

Christmas in July!

Jacob had another great day today. He walked all the way from his room to the playroom which is quite a distance. He started to cry and reach for me about half way there but we got him to keep going. We were pulling the wagon in front of us and kept telling him he could have a wagon ride once we got there. When we got to the playroom we asked if he wanted to play but he climbed in the wagon. He wasn't letting us keep it away any longer lol. His Physical Therapist laughed and said well I guess he is ready for stairs. He is seriously doing awesome with walking. This was only his second time trying and he was almost running.

We did a lot of wagon rides today. He would stay in that wagon all day if he could. He loves cruising the halls and the staff loves seeing him go by. They tell us how great he looks which is always nice to hear.

A fellow heart mom and good friend of mine, Michelle Roth sent Jacob a care package this week. Her son is the other Jacob from Team Jacob. He picked out a few items that he wanted to give to Jacob to cheer him up. In the box was a baseball. They had the great idea to have his care team all sign the ball since we wouldn't be back for a long time (God willing). I thought that was such a unique idea. So while roaming the halls we were getting autographs from all of the nurses and doctors we have grown to love. The doctors really got a kick out of it. They said they had never been asked for an autograph before lol.

I didn't think I would be able to get Dr. Sprays autograph. He is Jacob's surgeon and he is of course super busy. You don't see him much and when you do he is checking on a baby who just came out of surgery or going to talk to the family about how a surgery just went. Today I noticed he was coming down the hallway so I ran and grabbed Jake's ball. I yelled his name and I think I freaked him out lol. I am pretty sure he was just out of surgery and on the way to talk to a family but you know this is important stuff. When I asked him for his autograph he looked a little surprised but smiled and said of course. So now the baseball is complete! Such a great keepsake for Jake. Thank you Roth family!

We also stopped by the playroom a few times today. Jake loved looking at their books and having me read to him. Getting him out of his wagon and all of his tubes and wires situated is a pretty hard task. By the time we get him out he stays maybe 5 minutes and we have to do it all again. But if it makes him happy it is worth it! I am building some serious muscles lifting him like a baby again, great workout lol.

Today in the playroom they had a big buffet of food set up in honor of Camp Get-A-Well-A. I could only get Jake to eat the french fries and popcorn lol but I ate and it was delicious! Camp Get-A-Well-A also had a carnival today and Aidan got to have his face painted and won a few prizes. This trip has been a lot harder on Aidan so it was so nice seeing him be able to have so much fun this week and get some attention too. We forget how hard it is on the siblings to be a part from their parents and also be stuck in a hospital room all day. The staff here at CHOP goes above and beyond. Their child life program has been amazing this stay. They stop by a few times a day to let Aidan know what events are going on and make sure both boys have whatever they want.

Nutrition wise Jake snacked all day. His diet is pretty much consisting of cheese puffs and apple juice. I did get some of a toddler meal in him today. He didn't want his juice very much which is not good. We really need him to drink to replace all of the fluid that is draining from his chest tube. He is also on three different diuretics now so we need to keep him hydrated to replace what he looses from those. He is on Diurill, Lasix and now Aldactone. He will most likely come home on those and then be weened off of the Diurill and Lasix. His cardiologist told me there is a study that shows Aldactone can actually help with the heart function and increase mortality so he may stay on that one for a while. He is still having a lot of air in his tummy and it is causing him to retch. Certain foods especially dairy or really heavy stuff makes him throw up so we have to go slow with feeding. His stomach tolerates the cheese puffs just fine though lol. The staff said he was actually low on sodium so the foods he has been eating will help that. Still working on getting him on a better diet but they are just happy he wants to eat at all.

Jacob's chest x-ray looked better this morning but his chest tube near his right lung is still draining quite a bit of fluid. The original chest tube that was placed during surgery is not draining much and will most likely come out in the morning. It has started coming out a little bit from him moving around so much so they just said he really doesn't need that one anymore. Now if only the other one would stop. I thought he was having a ton of drainage but his cardiologist said it is tapering off. She also told me some kids drain 1000 mls a day. Jake is only draining about 200 to 300 per day. So it is not horrible but he can't come home until it stops. We won't be able to come home this week but possibly early next week. There is not really a way to tell when until the fluid stops. That is all we are waiting on. Andy, my mom and Aidan are supposed to leave to come home on Saturday. I will just stay at the hospital with Jake and then when he is ready to come home Andy will have to drive back up to get us. We are still trying to figure all of that out but we can't really "Plan" since we don't know how long it will take. Please continue to pray the fluid stops!

We had a few visitors today. Jennifer Perez stopped by with her son Andrew who has HLHS. He and Aidan both got along really well. Jake was really tired and worn out from his walk so he just was entertained by watching those two.

Stacie Jackley also came by and was a huge help with Jake today. Her son Kellen has HLHS and she is a board member of Sisters by Heart as well. She pushed around Jake's IV pole and strolled the halls with us. She also surprised the boys with a fun gift bag. Thank you Stacie, we love you!

I had not left the hospital for two days so Andy decided to take the night shift tonight. Last night was rough and I didn't get much sleep. It was a perfect night to stay at the Ronald McDonald House because they were doing Christmas in July. I can't say enough how amazing this place is. We had a wonderful dinner followed by Santa giving out gifts to all of the kids.

Every present had a name on it so no child whether here or at the hospital was left out. Aidan got a parking garage/race track and Jacob got a little people race track which actually will connect and work with a track we have at home. It is perfect because he has been playing with a track they have in the playroom at the hospital. We sang Christmas Carols and a volunteer read the kids "How the Grinch stole Christmas".

As if that wasn't enough then they did a raffle. Each family got five tickets and could put them in any basket they wanted. Aidan put all five in a gift basket full of "Disney Cars" stuff. When it was time to call out the winner, HE WON! Usually he won't go anywhere without me, he is afraid but he was so excited he shouted "That's us" and he ran up to get everything. The stack of toys was over his head when he was trying to carry it all lol. He was glowing with excitement.

We really were here during a perfect time for him. They had Camp Get-A-Well-A going on at the hospital and Christmas in July at the Ronald Mconald House. Between all of that and the visitors we have had who brought the boys gifts, I don't know how we are going to fit it all in the car lol. Aidan is so happy and I know Jacob will be thrilled to get his presents tomorrow.

Please be sure to throw your change in the Ronald McDonald box at the McDonalds drive thrus and save your pop tabs to donate as well. They go above and beyond, not only giving families a place to stay but always hosting events to help make that stay easier. They are such a wonderful organization.

You can also make a donation to the Philadelphia Ronald McDonald House by clicking below:

So the plan for tomorrow is to take out one of his chest tubes, get him up and walking as much as possible and pray that the fluid stops! Thank you everyone for the continued thoughts, prayers and well wishes. We feel the love and support and it means so much to us. 

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