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Liz Stokes

Update on yesterday’s cath.

Post your questions. Rob and I will go live tonight on Facebook in Fight Hearter With Carter around 7/8 to address them and answer them the best we can.

1. Carter’s right lung and right pulmonary artery grew. Just not to the size needed for the team to feel comfortable to do a Glenn utilizing both lungs.

2. He had three large collateral veins that were coiled off. Two in the right lung and one in the left. Collaterals are veins that when there’s not enough blood flow to an area the body will change and try to help the area in need. Collaterals cause the pulmonary arteries not to work as hard to pump the blood therefore causing restricted blood flow and limited growth. He has many of these. The three coiled yesterday were the largest.

3. The third surgery (in the series of three shunt surgeries) the fontan, is permanently off the table. His lungs can’t handle it. Leading to:

4. The words heart transplant have begun to weasel their way into conversations.

5. There were three options present to us by the heart cath (not the entire nor surgical team): 1. A Glenn shunt to the left lung only. 2. A Glenn shunt to the left lung with a pulmonary artery patch to the right lung. 3. Another pulmonary shunt and we wait and watch.

6. There is disease in his left lung, the big healthy one. Could be one of three things: 1. Lung disease 2. Respiratory virus or 3. Fluid build up from the left lung working too hard and over circulating. We don’t know only time will tell.

7. Of all the options we also knew one thing. Carter would be coming home on oxygen due to his right lung struggling to keep up.

8. Carter struggled to recover well yesterday. He lost a lot of blood. They were struggling to draw blood to test it so they could see exactly what his hematocrit was. He received a blood transfusion and was placed on the high flow machine. Around midnight they bumped the machine up to 8 liters of flow with 50% oxygen. He liked this and responded well to it. Starting at 2a and by 7 am they were able to titrate him down to 4 liters at 50%.

9. At rounds it was decided to bump Carter up to 100% oxygen (his home rate) and continue to titrate him down to a half of a liter “on the wall” and off the high flow machine. Feeds have also been reintroduced.

10. Due to his behavior overnight and early this morning, he’s earned himself another night in the CICU unless another case comes in that takes precedence over him. In that case we’ll be moved to the floor tonight.

11. Surgical consult. There is a large team of doctors who work together to decide what’s best for Carter. We have doctors on the team from CHOP and Boston of whom Cincinnati conference in and consult.

12. In order for a decision or care plan to be made the entire team must vote unanimously on the plans presented.

13. Dr. Bryant, Carter’s surgeon, walked in with a smile on his face, grabbed a chair, sat down directly in front of me, looked me dead in the eye, and said. “We’re doing the biventricular repair.” I choked. I thought he was kidding. He wasn’t. He said his lungs have superior air flow, he’s large enough (even though he’s on the smaller end of large enough for this procedure), and there’s really no other option to set him up for future success. They’ve up’d the date on the surgery from 3-4 years of age to 7 months old.

14. So, on Tuesday, January 16th, our son will be going to the OR for his fifth open heart surgery.

15. It’s going to be a long surgery. 12+ hours not including pre-op and post-op.

16. If they cut open his heart and find out the MRI was a facade they will proceed and do the left lung Glenn shunt with a pulmonary patch (shunt) to the right lung.

17. This surgery is difficult, even for Dr. Bryant, so in the operating theatre will be his superiors to weigh in with their opinions and assist in the surgery.

18. The recovery for a bi-vent on a typical kid with two healthy lungs and no heterotaxy syndrome is a 10-14 week hospital stay.

One comment on “Update on yesterday’s cath.

  1. Diedra says:

    Praying for Carter… Dear Heavenly Father please place your healing hands on this baby, his supporting family, and every member of his care team. We are claiming healing and surgical success today!!!! IN JESUS NAME!!! AMEN!!!!!!!

    Liked by 1 person

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