eliah

September 1st, 2011 · Bambino Steps (Kimberly) ·

This little guy is minutes away from having his third open heart surgery. This will be his fourth heart surgery since first; his fifth surgery overall. He is three years old. He is my nephew. He is wonderful. He is amazing. He is the most courageous human I know. Tough as nails. And I love him dearly. I love him so dearly. This surgery is really scary. My family and I appreciate every good thought, prayer, and light sent his way. He needs it all so very much right now. And I thank you deeply.

Update #1: His surgery went well. Took two hours to get to his heart; they were able to do the fixes they set out to do. Everything went well. They had some complications when trying to start his heart. He is on a pacemaker and now we wait for his heart to start beating on its own. He has a few more days for that to happen before the pacemaker could become permanent.

Update #2: Last night he developed a fever and the doctors are now checking for infection. This is the hardest part now, for his parents to see him in such agony, while this boy fights and struggles and ultimately, perseveres.

Update #3 - Rough night. Eliah’s pacer box was going all over the place, keeping everyone up and caused much distress. The medical staff changed it out for a new one, but it continued to make awful beeps throughout the night. His heart continues to be fully supported by the pacer box, unable to beat on its own. That said, he is blowing bubbles and watching movies and has eaten a graham cracker, his first solid food in days. He also gave his Dad a smile today, his first since the surgery. His brothers and sisters were able to visit him yesterday. Everyone is super exhausted, of course that goes without saying.

Update #4 – Eliah’s pacer box has been changed out several times, they deemed that it was not working. This evening at 8:00pm he was rushed into emergency surgery where he is now getting temporary pacer wires put in through this j-tube, which is a line to through the jugular to the heart. My sister and brother-in-law are pretty much at their max. Their other children had their first day of school day, Ellie’s first day at kindergarten, Marybeth’s first day of 3rd grade and Benji’s 1st in 5th grade, skipping 4th. He threw up in class. This is all really taking a toll on everyone. Continued positive thoughts and prayers are so very much appreciated.

Update #5 – Eliah is scheduled to have a permanent pace maker put into his chest tomorrow morning at 8:00am. They will open his chest again for this. I was able to see him on Skype this evening, and I was then able to spent the evening with him in the PICU, the first time I’ve seen him in person since his initial heart surgery. When I first arrived at the PICU to check in I heard the most horrific screams of “OW” over and over again; it was really difficult to listen to a child in that much agony; I then realized it was my nephew. They were putting in the IV. I only had to endure it for about two minutes, but I know it went on for a lot longer. I have said it before and will say it again, my sister and brother-in-law are beyond, beyond amazing. After it was over, I spent the evening playing with him and his new toy, which was given to him after all his pokes. We also sang our family’s favorite lullaby Chi-Baba Chi-Baba (My Bambino Go to Sleep) along with the Perry Como recording, over and over and over again. It was the sweetest thing. I shall never forget this (totally impromptu and unexpected) evening with my nephew. I shall always cherish it. Thank you for your continued positive thoughts and prayers. We are so close to moving forward from this heart surgery (though others are inevitable). I can see the light at the end of the tunnel.

Update #6 – Just went through a roller coaster 24 hours. Eliah was outfitted with a permanent pace maker; the surgery went well. We saw the light at the end of the tunnel. Then we were informed that there was air around his right lung. We waited to see if one of his chest tubes would eradicate the problem. They did not. Late last night they performed a procedure which he was numbed for, but awake for, involving a long needle. This kid is amazing. They were able to suck all the extra air out and we were told there would be x-rays this morning (Saturday) to see if the air returned. IT DID NOT. There is now talk of taking out his remaining chest tube and moving them upstairs, out of the PICU at some point. This is huge. HUGE. Major light at the end of the tunnel. Thank you again so much. We are all so ready to move forward.

Update #7 – Whew. Okay so the last 11 days (how has that much time passed already?) have been insane. Eliah is now back at home, resting, recooping and healing. He has been through so much, both physically and mentally. My parents were each able to sit him on their laps yesterday. He has not been able to be held in nearly two weeks. Can you imagine that? Especially as a child who endured so much? And most of the physical touch that he has felt has been from strangers, with cold, rubbered hands, using cold, hurtful instruments. He’s traumatized, but at home, where he should be, with his brother and sisters and parents, playing, resting and eating. He has lost so much muscle tone that he has to be held upright in order to eat, but he is eating. And he is such a fighter, I have no doubt he will be running and jumping and pushing and pulling and climbing in no time. This boy, I tell you, he is amazing. Thank you for reading along on this journey, and for the kind words, and supportive thoughts and prayers that you have sent our way. It has meant a lot to be able to share something so personal, so, well, heart-wrenching, with the world. And I know Eliah appreciates it more than he could possibly express. Thank you.

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