Fontan!

Once again I start my blog by apologizing for how horrible I am about getting around to actually writing. We don't have a computer so it is not easy to sit down and write these things out. Let's get started......


Monday May 6th, 2013

 Eli's third and hopefully final open heart surgery!!! We were to arrive at the hospital by 8:30 for the surgery. With a good amount of panic, crying and sedatives we were on our way for a 9:30 departure for the OR. I swear the hardest part is giving him a kiss goodbye and choking back the tears as you tell him you love him and send him on his way.  Rafe, my mom and I all smothered him in kisses and watched him be wheeled away. When he looks back at you through the bars on the crib and he realizes that you aren't following him, ugh the worst feeling ever.



  The surgery went very smoothly and quicker than we expected, about 3 hours. He has never had any problems going on or coming off of the heart lung machine (the thing that keeps the blood flowing through his body while they work on his heart). They were going to fix his paralyzed left diaphragm while doing the heart surgery and it would only require a few stitches to hold the diaphragm down in place. That ended up not happening because they discovered he has a hiatal hernia and that is the reason his diaphragm is so far up. They weren't able to do the hernia surgery then because they were worried Eli would bleed to death. It would be something we need to address in the near future though. The night of his surgery he ripped out one of his central IV's that is stitched into place in his groin and continuously ripped out his oxygen and NG tube.

  Eli spent two days in the pediatric surgical heart unit (PSHU) before being moved down to the second floor which is general care. I was more than unhappy with this decision and spoke to a few different people about it and unfortunately lost the battle. I was assured he would be well watched and if any point I was not happy I could always call the surgeon on duty with my problems. I am happy to say we felt he was given excellent care and attention. Now let me clarify, I'm not saying the 2nd floor is horrible it's just that the nurses typically have 4-5 patients where in the PSHU the nurse has 1-2 so the care and attention is definitely different. With Eli being 2 days post major heart surgery I felt it was a rushed move considering he still had 2 chest tubes in and an arterial IV stitched into his groin. There is high risk for infection with both of those things. Thankfully no problems with either.


Hanging out in the crib watching TV

He was heavily medicated for about 4 days and spent most of his time sleeping so he was able to rest and recover nicely. The biggest problem we had was trying to get him to take these horrible tasting medications by mouth. He ended up spitting out majority of them and it was holding us back from being discharged. We had tried putting them in food and his bottles but then it just turned him off from eating which isn't what we needed either. He ended up getting an NG tube (feeding tube through the nose) just strictly for medicine use. We got a few of the medicines switched over to pills so we could just crush them and put them in whatever he eats or drinks and thankfully he is none the wiser. He spent a total of 10 days in the hospital. We were also able to get into the Ronald McDonald house the night of his surgery, although daddy stayed with Eli for 8 of those 10 nights.

As of last night I removed the NG tube from his nose because he is no longer on any liquid meds so he didn't really need it and it was time for his oxygen tubes to be replaced anyways. He started back at physical therapy last week and he had developmental therapy this morning. Both therapists quickly noticed his weight loss (He weighs 23lbs) and that he had lost a lot of his strength. Thankfully these are things that can easily be gained once he's fully recovered. He will remain on oxygen until after this next surgery.

Strongest boy I know!

I am waiting to hear from the general surgeon's office so we can schedule the hernia/ diaphragm surgery. The cardiologist has cleared him for it and we both want it done as soon as possible. We are looking at about 2-3 weeks from now. I have no idea what the surgery and recovery time will be.  We hope to continue with our fairly smooth recovery and get our little adventurous boy back, full energy and strength.