Day 2 ♥ Update 2

Becky is off the ventilator and is breathing with the support of some forced air.

Mom and I stepped out of the room while she was extubated by the team. The doctor found us in the waiting room a few minutes later. He told us that the tube came out and her hair shot up. A tech found a hairbow to provide a little style. Doctor V also asked me how many chins Becky has. I’m not sure as I am still trying to find her neck.

Update #5

We just met with Dr. V. He said that Becky was a very complex case and there was a lot of cardiac failure. Her heart was much larger than normal. She had two huge holes between the upper and lower chambers. Dr. E had told me that children with Downs syndrome usually have normal valve anatomy. Unfortunately this was not the case with Becky. Her mitral valve is abnormal, very flimsy and thin, as well as small. Dr. V hopes for minimal leakage from this valve and for good growth. Now we wait to see how the repair consolidates and conforms to the heart over time.

There was also the presence of milky white lymph fluid in the lower cavity. Dr. V said that he has never seen this before. I’m still unclear what this means and samples have been sent for testing. It seems to have something to do with her feeding. She has mild regurgitation on both sides. Becky isn’t on much support right now but will remain intubated to keep her calm.

Overall Dr. V is pleased with the repair given that she is a complex case. The next 8 hours are critical. Hopefully she rests comfortable as the sutures begin to heal. We hope to see her in the next half hour.

Update #4

Just about 45 minutes to go now. Becky will return intubated in order to keep her calm. She has a temporary pacemaker which will keep her heart beating at 150 beats per minute. There have been no serious complications save a little bleeding from the ET tube and some leaking of the lymph system. When she is done, Mom and I will have to leave the room for about 45 minutes while they set everything up. We will meet with the surgeons during that time for a full update.

Update #3

Kathleen (Becky’s PCICU nurse) just stopped in again before heading back to the OR. Becky is beginning to come off the by-pass machine. The repairs are completed. They will do another a transesophageal echo (TEE) to check those repairs. They will also watch Becky’s heart closely to make sure it gets back into the proper rhythm as it restarts. Hopefully, Becky will be out of surgery in the next 1-1.5 hours.

Update #2

Kathleen (Becky’s PCICU nurse) gave us another brief update. Surgery is progressing well. The surgeons are working on the Gortex patch that will create the proper connection between the upper and lower chambers of her heart. This will allow the right and left sides of her heart to communicate properly. This patch is in the middle of this drawing with hashmarks across it.

Becky may return to the room intubated. She needs to be very calm after surgery. If she is agitated and cries too hard, she could tear the delicate stiches holding the Gortex patch in place. We will not be able to hold her until sometime tomorrow.

Update #1

Kathleen (Becky’s PCICU nurse) just updated us and everything is going well.

Becky went to sleep quickly. They placed an arterial line on the left side and a central line on the right side. They did a transesophageal echo (TEE) to better image the heart without the lungs and ribs getting in the way. This will be repeated after the surgical repair is done. Becky is now on the by-pass machine. There will be another update around 11:00am.