So we have the all clear for visitors as long as they are NOT sick. Jacobs O2 level was 95, which is great considering it was 78-80 before the Fontan. His INR test came back normal, this test is to check to see how the coumadin is working.

On our way out of the office Jacob started doing his super hero pose in front of all the doctors and nurses! They were laughing so hard, they loved it!

Jacob still has to get blood-work every two weeks until the coumadin gets leveled out. After that it will be once a month. No rough housing for another two weeks, but normal boy play doest exclude rough housing. He just can't have anyone sitting on his chest.....duh or take any direct hard blows to the chest. Other than that he is good to go! Guess I need to start posting post-op at home updates now.

Thanks again to everyone for praying for our little super hero!

4-4-11 UPDATE FOR JACOB

Jacob has had a fantastic recovery, and even though it's been almost 6 weeks he still has a long way to go to be completely recovered.  We  have to make sure he doesn't have a direct blow to his chest and also make sure that he is not around anyone that is sick.  Yesterday we ventured outside again since it was so warm (I had a hoodie on him of course) and played some baseball, threw some frisbee and jumped on the trampoline believe it or not.  Below is a short video of the "triumphant jump".

We spent about 3 hours outside playing and he loved it!  We will be going back to Cincinnati on Wednesday (April 6th) for a post-op check up.  Hopefully we will get the all clear and he can go back and visit his buddies and the babysitters.  He really misses them.  Please continue to pray for Jacob as he still has a very long road ahead of him even though the surgeries are finished.  He will fight a life long battle with infection, weight gain, and if something goes wrong possibly another heart surgery which could be a heart transplant.  Right now though he has more energy than he knows what to do with!  Thank you all for the prayers and thoughts for Jacob and our family.

The Roths

3-16-11 Update

Well last night wasn't so good. About midnight daddy told me that Jacob was really complaining about his tummy hurting. His liver is really swollen because of all the readjusting of blood flow. So they took him down for x-rays around 1:30am. They didn't show any obstructions in the intestines but did show that the liver is swelling and blood flow is backing up going into the liver. The liver has now swollen several inches past his rib cage.

They started him on Enalapril to slow the blood flow. It will slow down the flow to the heart and as a result slow down the blood going to the liver so it can adapt. This is one of those things if left unchecked and untreated it can cause liver failure. Just keep praying for him and that his liver will adjust to the new flow of blood. I will update again once we hear from the docs. Thanks for all the prayer and again keep them coming.

Decent Night, Better Morning...

ECHO went perfect. They will not need to sedate him which is good because his tummy growling and we just ordered him breakfast. Ofcourse the first thing he asked for was APPLE JUICE!!!! LOL

When he woke up he was really sweaty as usual so I took some pictures after I sweat styled his hair...LOL

And here are some when Daddy got here this morning to play PEEK 'N' HIDE.....LOL





He is smiling a alot today which makes me feel really good! So now we just wait for echo and blood results for today and take everything as it comes. Still no word on when we are going to get to come home but I'm not in a hurry because I want him to be completely ready since we are so far from Cincinnati. Keep praying because even after we get home we still have risk for infection for quite a while.


Love and Heart Hugs

Michelle, Pete and Superhero, aka Jacob



TUBES OUT AND PARENTS POOPED

Ok, sorry I haven't posted in a while. Its been kind of stressful here the last few days. Jacob didn't have a very good day yesterday, and today didn't start off that great either. He had blood drawn three times today and he is running out of places to stick. He had a fever today of 103.1 (which they said was common in Fontan patients) and they gave him Tordal for that. His fever came down and they came in to remove the chest tubes. They tried the right side first and it wouldn't come out, it was stuck. So they called in his surgeon and he came in to take it out. The left side came out with no issues. It was not very pleasent to watch.

On a good note, the chest tubes are out and only has his feeding tube and IV remaining. We just returned from x-ray where he did totally awesome. He said "CHEESE" when they said to smile........LOL it was hilarious and the technicians loved him. Tomorrow he will have an echo and lets hope they don't have to sedate him for that. They didn't have to for the first one so hopefully he can go 2 for 2. Keep praying as he is afraid to walk as well. He is very unsteady and is scared to stand up, but can you blame him? He has been through a lot in the past three days, not to mention the prior 4 days. But he is indeed a trooper and the prayers are keeping him strong.

On the way to X-RAY



We are worn out from worrying so much but now that the chest tubes are out we can rest a little easier. Now just pray there is no pneumonia in his lungs as he has a lot of fluid and is coughing a lot.







I will update again tomorrow if I don't forget. Funny how all this can make you forget stuff....LOL







With Thanks and LOVE







Michelle, Pete and SUPERHERO (Jacob)

Breakfast anyone?

Jacob's appetite is coming back! He kept all his feeds down lastg night. We ordered breakfast and he ate three bites of egg, half a piece of bacon, three good size bites of apple sauce, one bite of banana, three drinks of orange juice and of course his apple juice. He is sleeping peacefully now. They plan to take off the bandage on his incision and get him up and walking since he started having a congestive cough last night. He still has his chest tubes but they did take out the IV in his foot and had to replace the one in his right hand. The got it on the first stick and were able to draw 4 viles of blood quickly without it clotting. They want him up and walking today so the congestion will break up so he doesn't get pneumonia. Jacob said he wanted to go to the playroom too! He will have to make it with his chest tubes still in but I think he will do fine. Keep on praying because he still has a long way to go, but the prayers that have been prayed are working for sure. THANK YOU GOD!!!!!!

Below are some pictures I took this morning.

Sleeping after breakfast and a new IV

Cards and drawings from Connor, Myles, Lucas, Nikki and Josh (his buddies back home, thanks guys)

Ballons from Aunt Sarah, Uncle Michael, Taylor and Kayleigh (he loves them)

Ballon and teddy bear from WVU Childrens Hospital (thanks everyone)

Woody doll from Gram and Papaw (Pete's Mom and Dad, love you guys)

And again snoozing after all the action this morning

Mommy and Daddy Love you Jacob.  Keep up the good work!  We will always be here for you SUPERHERO!!!!!

3-11-11 update

Sorry I haven't posted an update to the blog since the day of surgery.  I didn't have the link to post from my phone until today.  In any case Jacob has been having some issues holding food down and I think they finally found the meds that will work for him. He vomited twice and it was very painful for him, plus they ended up having to change all of his bandages since they got soaked. 

However this did allow me to hold him for the first time since Monday morning. He did eat some gold fish crackers, a few bites of apple and two small bites of apple sause today.  It got to the point that he was afraid to eat for fear he would throw up again.

This evening he has been nibbling on the gold fish crackers and hasn't stopped drinking apple juice.  The have him on a regular regiment of Miralax, lasix, analapryl, cumidan and zantac.  I am hoping that these will work together to get him eating so they can take out the feeding tube.  He still has his chest tubes as he is still putting out a significant amount of fluid from the chest cavity.  They will be removing the bandages from this incision tomorrow but I'm not sure if the will remove the intracardiac and pacer bandages.  He has been leaking from those as well.

They will be drawing blood tomorrow morning at 4am and I am hoping he will not get so upset that he vomits all his feed up from tonight.  His nurse told me they were going to try and hold off on bloodwork unitl like 8 am to ge give the food time to process through before they get him so upset.  I also asked about a PICC line to get blood and give meds through as this would be alot less painful for him as he wouldn't feel anything when they drew blood and gave meds.  I am waiting to hear in the morning if they decide to do it or not.  I will keep you posted.

He always smiles when we ask him to, and it makes us feel good about everything.  Please keep him in your prayers.