Saturday, June 20, 2009

Luke's First Heart Surgery

Originally posted June 8, 2009

We are sitting in the OR waiting room. After 7 and a half hours, Luke is finished with surgery and is headed up to recovery in the Pediatric Cardiovascular Intensive Care Unit. The surgeon is "cautiously optimistic".
The surgeon said that he did everything he planned to do and most of it went according to plan. He put a patch over the valve that isn't working, so blood will no longer pass through that valve into the right ventricle. Instead, blood will get to the lungs to get oxygenated through a shunt that the surgeon placed between his right atrium and the aorta. He also cut out some of Luke's right atrium because it was too big. The surgeon also closed off the artery (PDA) that they've been keeping open with medication. The PDA is important for fetal anatomy, but isn't normally used in infant anatomy. The PDA normally closes within 24 hours of birth, but in Luke, we needed to keep it open so blood could get to the lungs another way. Now that we have the shunt, we don't need the PDA to stay open anymore. No more medication that makes him sleepy or causes apnea! So Luke should be awake and alert more often once he gets off of his sedation and anesthesia meds.
Because of the surgery, Luke's heart (left atrium and ventricle) is substantially smaller (and will get still smaller as time goes on). Therefore, his lungs have more room to expand, and guess what, they are both inflated! These are all answers to prayer, and we thank you for praying them and thank God for answering them.
Some things did not go according to plan. The surgery was supposed to take between 4 and 6 hours. We left Luke to a very nice anesthesiologist at a little after 8 this morning. The anesthesiologist planned to put in several new "lines" before the actual operation started. These lines are for blood draws and giving Luke medication intravenously and some other things. Luke is notoriously difficult to "stick" and establish these IV lines. The anesthesiologist tried to get these lines in for I think over two hours and couldn't get them. So Dr. Mendeloff, our surgeon, came to the rescue and got them in. Surgery commenced about 11:00-11:30. The other thing that didn't go according to plan is that patients who have a shunt put in like Luke are prescribed baby aspirin to avoid clotting at the shunt site. Luke's been on aspirin for about 10 days, but should have come off of it temporarily 72 hours before surgery. The neonatologists never gave that order, so Luke got some doses of aspirin that he shouldn't have, and this made it pretty difficult for his blood to coagulate after surgery. Post op took a really long time.
Dr. Mendeloff came out and talked to us about the surgery and then left. About 30 minutes to 1 hour later his nurse came out and talked to us again. She explained that during the surgery Luke's heart had trouble keeping a rhythm a few times and they had to shock him. This is pretty normal during heart surgery. However, on his way up to recovery this happened again and shocking him didn't help. She explained that his heart is too sick and too tired to beat on his own right now. So they put him on a heart/lung machine just like the one he was on during surgery. This does all the work of the heart and lungs for him. She explained that Luke can be on this machine for up to 5 days. If his heart cannot do the work on its own after these five days, it means that it will not recover and Luke will die. If it can, then they will slowly ween him off the machine and then he will recover as planned. Also with this machine there is a risk of bleeding into the brain. They will do a brain scan (sonogram?) every day to monitor for this. If he does bleed into his brain, they must take him off the machine and he will have to make it on his own or die. The surgeon and cardiologist say that he still has a very good chance for recovery, so that's good news. We are very scared about this and are on pins and needles waiting for Luke to recover. Please pray.
If Luke recovers as expected, we expect Luke to be in the Pediatric ICU for 1-2 weeks (about), and then he will go back to the Neonatal ICU where he will learn to eat without a feeding tube. This time in the NICU we are told can take anywhere to a few weeks to a few months. Heart babies typically have a pretty difficult time learning to eat on their own because they tend to tire so quickly. But Luke is strong, and we have every hope that this stage in the process will go quickly. Once he can take every feeding on his own, we can, hear this, FINALLY TAKE HIM HOME!
One final thought. On Mondays Dr. Mendeloff takes part in a conference with other leading cardio and thoracic surgeons in which they share info on cases and put their heads together to make the best decisions for patients. Dr. Mendeloff presented Luke's case in this morning's conference. Once he showed them Luke's chest x-ray, the doctors could not believe that Luke survived the pregnancy with his heart as big as he did. They have never seen that before. That's the power of prayer folks. No matter what happens, Luke is a testimony of faith and the power of prayer, simply because he survived pregnancy and was born at all.
So we implore you to pray Luke through these next 5 days. We need this baby boy healthy and to continue influencing people for his kingdom.
We thank you for the prayers that have gone up today for him (and for comfort for mamma and daddy), and we ask you to keep it up.
We love you.
Blessings,
Rachael & David

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