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.

He is back in the OR

They told us it would take an hour to an hour and a half to get the lines started.  They will let us know when the surgeon makes the incision to start getting to the heart.  Been pretty tough this morning, had another anxiety attack when we got here, long story short I ended up in Jacobs bed.  Just pray because it's going to be a long day.  Jacob kept telling me that it would be ok.....so sweet and brave.

A note from Dad

We don't hear alot from Heart Dad's out there so I thought I would post a little something my husband wrote last night.

03/08/11




I wish I could see the world the way my two year old son does. Always smiling, always happy, always looking for someone to play with. Last week after having his heart catherization for his upcoming surgery he didn’t want to leave the hospital. He enjoyed playing in his “Boy Cage” as he called it. It was actually his hospital bed that doubled as a crib and medical tent. He loved to have us lock him in it with the sides fully closed. He kept calling it his boy cage to the nurses who he constantly flirted with. One even made him a sign which read “Jacob’s Boy Cage” after his playful acts. While Jacob played in his boy cage still hooked to heart monitors and IV’s, he would occasionally ask doctors and nurses to sign his baseball. See when Jacob was born he got a baseball and display case. It was intended to put his date of birth and measurements on; however, It became much more than that. Jacob was a heart baby, born missing the right side of his little heart. He had his first open heart surgery at only 7lbs (19 days old) with his second at eight months old. Somewhere along the way his mother and I thought it would be neat to have the doctors sign his baseball, after all they would be responsible for him playing ball. By the time each procedure was over there was not enough room for one more initial. Jacob is now ready for his third and Lord willing final surgery. With this surgery comes a new baseball, only this time he’s proudly asking with his little golden voice, “Will you sign my baseball”?



We had a few days in between the heart cath and actual surgery so they let Jacob out of his “boy cage”. Believe it or not he didn’t want to go. After all the needles and test he didn’t want to leave. He loved all the toys. He loved the doctors and nurses. He loved his own TV in his room, and he loved watching the fish in a big tank just down the hall. He kept saying “I don’t want to go” as we checked out of the hospital. We assured him we would be back and he could play with the fish later.

This morning, later has arrived. We will stop and look at the fish..ies on the way to the surgery ward. Today, Jacob will have his third open heart surgery, only this time he’ll know what’s going on. By now his mother and I are taking the most painful walk of our life. We get to carry our son to the operating room doors where we kiss him goodbye for his 7:30am surgery. Doctors tell us this procedure will take 5-6 hours minimum, followed by several hours in recovery before we can see him. One even explained that it takes longer to cut through all the scar tissue from the past two procedures. That includes the wires that held his little rib cage together from the past two.

Relax; Jacob is a pro at this. He’s already had his little heart stopped twice. The first was when he crashed a few hours after his first surgery in the ICU as his mother and I watched. The second was on the table during surgery #2 when they removed parts of his heart and rearranged others before restarting his heart. Now it’s time for one more pitch. Remember, three strikes and we’re out of here. Good Luck Jacob. Don’t forget your baseball.



Love, Dad

Surgery date moved again.........

The doctors called us as we were about to leave for the day to let us know they had to postpone Jacobs surgery because they had two babies coming in that required emergency surgery.  They had initially wanted to reschedule the surgery for April which would have been impossible for us to do since we have already made arrangements to be gone for March.

They did call us back to let us know that they could get him in for surgery on Tuesday of next week, March 8th.  He will still have to have his heart cath tomorrow at noon, then another chest x-ray.  We will give him a day to recoup and then head home Thursday to wait out the weekend.  We will come back up Sunday as he has blood work scheduled for Monday morning, then surgery Tuesday. 

We will keep everyone updated with any other news we have.

Thanks for all the prayers and support, we love you all.

Pete, Michelle, Jacob and Mamaw