Post-Glenn updates, day 2

Daniel received his Glenn surgery on Tuesday, November 6th. They took him to the OR around 10 a.m. and started surgery around 12:30 p.m. They completed his surgery around 5 p.m.

According to Dr. Dodge-Khatami, the surgery went well. They connected the superior vena cava (SVC) to the branches of the pulmonary artery (see 2nd repair below), patched his aorta, and took down the sano conduit put in place in the Norwood. 

On Thursday, October 25th, Daniel’s cardiologist Dr. Viddhya detected a coarctation (narrowing) of the descending aorta. Doctors hoped to correct this through a cath lab procedure in which they would balloon out the aorta. On Friday, October 26th, Daniel had a heart Cath procedure. At first it seemed like a total success, but then on Saturday Daniel started to de-sat and struggle. I wrote about this in a previous post, Daniel Updates CMH round 2.

To make a long story short, surgeons found out in surgery on Tuesday that the Cath lab procedure hadn’t worked because there was too much scarring where they tried to balloon it. Because of the scarring, Dr. Dodge-Khatami patched the aorta instead of stenting it. He says that this will correct the aorta and eliminate the need for future surgeries. Even though it adds time to recovery now, this is better for Daniel in the long run because he, hopefully, won’t need another surgery until his 3rd repair, the Fontan.

The Glenn surgery that Daniel had on Tuesday is best performed between four and six months old. Daniel will turn four months old on Tuesday, November 14th, so Daniel is young to have had the Glenn. According to his due date, he is actually only about 2 months old. He had to have the Glenn early because of that coarctation of the aorta. The narrowing was causing his heart function to diminish. Because the surgery was done early, he had to be put on nitric oxide to help his blood vessels dilate.

Unlike the Norwood, after which Daniel was intubated for 10 days, doctors try to wean babies off the breathing tube as quickly as possible after the Glenn. This is because blood is no longer being pumped to the lungs. Because doctors connect the SVC directly to the pulmonary artery branches, blood passively flows to the lungs from the upper body. The oxygenated blood then flows into the heart from the lungs to the pulmonary veins, then is pumped to the body by the right ventricle. Because of the passive flow of blood from the head and upper body to the lungs, it is important to wean the ventilator as quickly as possible because all the pressures change (or something). Daniel was weaned aggressively off the ventilator yesterday around 2 p.m., less than 24 hours after surgery.

Daniel is in a lot of pain. He has an IV in his neck that measures the pressure in his head (Glenn pressure), an arterial line in his right hand, and an IV in his other hand. His chest is closed, but you know that’s got to hurt really bad–his sternum is stapled shut and his skin is sutured shut. He also has three chest tubes sticking out of him. To say “Daniel is in a lot of pain” is hopelessly inadequate. I don’t quite have the words of the understanding to describe what he must be feeling.

After doctors extubated Daniel yesterday, they had to take him on the fentanyl because is suppresses breathing. To be off the ventilator, they have to be sure he can breathe on his own, which is why they stopped the fentanyl, a heavy-duty pain reliever. They also had to wean down the precedex, an anti-anxiety drug. So Daniel was pretty much only on Tylenol yesterday. Can you imagine that???? ONLY TYLENOL.

(This picture was taken after surgery when he was still intubated)

Needless to say, Daniel was upset any time someone touched him. He woke up crying, which caused him to de-sat. At one point, it took us 45 minutes to calm him down. Finally, the nurse gave him morphine. Now Daniel is on Tylenol and oxycontin, ibuprofen, and morphine.

Last night on his chest x-ray, doctors noticed his lung tissue was not fully inflated. They think it is because he wasn’t taking adequate breaths because he was crying and in pain, in addition to the fluid draining out of his chest from the surgery and the change in blood flow and pressures. Because of his partially deflated lung tissue, they put Daniel on a bi-pap machine over night.

He did well on bi-pap. His chest x-ray looks much improved, and his blood work looks great too. This morning they have weaned him back down to C-pap.

Today’s goals are the following:

1. Wean nitric oxide down from 20 to 10. (already done; blood work looks good)

2. Give a blood transfusion over four hours to help with his oxygen saturations.

3. After the transfusion, wean the C-pap to nasal canula.

4. If the wean to nasal canula goes well, begin feeds this evening. They can’t feed him while he is on bi-pap or c-pap because it pumps gas to the stomach. If the wean to nasal canula goes well, they should be able to feed him over night.

Hopefully within the next day or two, they will remove chest tubes and his neck IV. They can’t take his neck IV out until they are sure he can support himself on the nasal canula.

We are making positive progress. Everything is just baby steps forward. Day by day, things are getting better.

Thank you all so much for your continued prayers.

***I debated on whether to post a picture of him after surgery. I had the same struggle after his Norwood. Seeing my baby like this is deeply haunting. I hate it so much. Part of me wants to just leave all this here in the hospital. But Daniel is so incredibly strong. He is such a fighter. I feel it is my responsibility to bear witness to Daniel’s journey. When he is old enough, I want to show him how far he has come. I want to show him how completely he has depended on God’s grace and mercy. I want to show him what a MIRACLE he is.***

(Sorry if there are any typos. I couldn’t edit and revise because Daniel is awake. Keep praying!)