I guess I should first discuss the surgery- or two surgeries, because nothing with my child ever seems to be simple. Avelyn was in the operating room for about 12 hours. Stating it was a long hard day for her is an understatement. As Sean loves to point out, she's had harder days but that only makes me feel worse. Our baby has been through too much. I really hope this is the last surgery for a while, preferably a decade but we're hoping for at least 4-5 years. Anyway the surgeries went well. It took the surgeon so long because he had to operate on two completely different areas. First he preformed the coarctation of the aorta repair via a thoracotomy, or incision in her back/side between her 4th and 5th ribs. Then he opened her chest back up and re-repaired her tricuspid valve and right pulmonary artery.
The surgeries seem to have been successful. Her right sided pressures have already come down a bit and her tricuspid isn't leaking as much. She still has a lot of swelling and stiffness in the cardiac muscle but hopefully that will improve with time.
The recovery/post-op period has been really difficult for our sweet little baby. She has been intubated so long that she is extremely tolerant to opiate and benzos, plus she's experiencing delirium again. You must also consider how much her tiny body was put through yesterday. She had three major surgeries in one day. Surgeries that usually take fully healthy adults weeks to recover from. She had all of these within hours. She has two major incisions, and thoracotomies are known to be especially painful. Her intercostal muscle was sliced and her ribs separated enough to allow an operation to occur. Then her chest was re-split and spread wide. Her tolerance to pain medications makes everything so much more complex.
The providers have been chasing her blood pressures up and down. Treating her pain drops her blood pressure so she gets fluid which has plumped her up. She'll have to pee all that fluid off but right now her blood pressures are still too low due to her ever increasing need for pain medication and sedation.
Her kidneys took a major hit during the surgeries, that were done partially to save their function. The decending aorta had to be clamped for 20 minutes to repair her aorta. That's 20 minutes her kidneys and gut went unpurfused. 20 minutes of more kidney damage. Today she is barely peeing at all. Diuretics can't be started yet because her blood pressure is still too low. We'll just have to wait and see how her kidneys do over the next couple days.
Good news is her chest tube output has decreased. Hopefully this is a signal of the chylous effusion clearing. Her effusion couldn't be attributed to any one thing, hence the extensive operation yesterday. We'll have to wait and see how she continues to do in that department too. It's possible she won't have to stay on the skimmed breastmilk any longer if she tolerates her feeds better when they are restarted in a few days. That'll be nice.
Her oxygen saturations have been low since she came out of the OR. For most of the day she has been on 100%fiO2 in addition to nitric oxide to lower her pulmonary hypertension. Her surgeon expected these findings though. I don't think the high O2 levels have done anything for her, nor has the NO. The oxygen has been weaned to 80% in the last couple hours with no change on her saturations. I think she's just going to hang in the 80% saturation range for the next couple days until the internal swelling lessens.
Her major issues right now are delirium, pain and sedation . She's been intubated and sedated so long that her tolerance is through the roof. Plus there's a threshold where no matter the dose it just doesn't do much anymore, the receptors are just saturated. Ketamine was added back today. Then she got chlorhydrate. Neither did much. She was so restless and her peak respiratory pressures have been high. As the day went on it became evident that she was delirious. She wasn't settling either. So she was started in haldol. Yes, my infant is on haldol. I hate it. I know I have said that about a lot of things, but each has been warranted.
If you don't know what haldol is, it's a first generation antipsychotic with horrifying potential side effects. Granted most have to be on it for a while before these become evident. Avelyn shouldn't need it very long but still. It hasn't been researched much at all in children-let alone infants and now it's being injected into mine. Believe it or not, I am grateful. My baby is now resting. She isn't in pain, she isn't kicking and waving her arms purposelessly. She's resting, and seemingly comfortable.
It's strange to hate something but be grateful for its existence. I have felt this contradiction so often in the last few months. I will be glad when there's less hate in my life. I can't wait for her to rest without the need of antipsychotics. I can't wait for her to not need pain meds or diuretics. There are many things we are not so patiently waiting for. But for today we feel blessed for peaceful rest, even though it's somewhat fleeting. There's still the pain and struggle of recovery but we hope it's the time she'll be put through this for a while.
Much love to you all. Thank you for your thoughts, prayers and support during her surgeries. We hope to see major progress in the coming days.