Surgery tomorrow??!!

UPDATE: It is Saturday morning and we are not going to surgery today. Samuel's fever has settled and he is more stable than he has ever been. They decided to give him today to coast and get strong. His lab results will come back late this afternoon and the doctors will confer then about whether he can go to surgery tomorrow (Sunday) instead. All is well... Just more waiting.
Love
Corinne (via iPhone from Samuel's bedside)

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Samuel has been reasonably stable the past couple of days. I am in awe of his medical team who seem to balance knowing all the interventions that are available to him with attending to what Samuel tells them he needs. Earlier in the week when he was struggling so much, they responded by adding this medication, tweaking that monitor setting, adjusting another support. Ultimately, they decided it was too much fiddling around for him. Babies with diaphragmatic hernias are notorious for not liking change and fussing. They are just very sick little people - and I know that I wouldn't much like noise and messing around if I were that sick! 

So the team has been trying to leave him alone as much as possible. There is still an incredible amount going into his care and, in addition to the usual, they have had to tweak his pain medication, up his nutrition needs, and deal with some swelling. The feeling now is that Samuel is as stable as he is going to get and it is time to go to surgery. After much discussion between his surgeon, cardiologist, anesthesiologist, and the chief intensivist in the PICU, it was decided to schedule Samuel for surgery Saturday morning.

These doctors are all willing to give up part of their weekend to make sure that they access the optimal window for Samuel to have this surgery. His condition is not as strong as they would like to see but he is not really getting any better at this point. Waiting longer is unlikely to help Samuel get any stronger and he may start to have other issues for them to deal with, such as infection or increases in swelling. Going to surgery now is a calculated risk.

As soon as it was decided that Samuel would go to surgery tomorrow, he spiked a fever. This is currently being monitored and treated with Tylenol. (Finally! Words like "fever" and "tylenol" that I actually understand!) If his fever abates, we are still on for surgery tomorrow morning. If not, we must wait until his cultures come back to be sure that he doesn't have an infection.

The surgery is two to three hours long. There will be two surgeons performing the procedure along with anesthesiologist, cardiologist and a host of residents, nurses and respiratory therapists. The procedure involves pulling Samuel's intestines, stomach and liver back down into his abdominal cavity where they belong. Particularly with the liver up, there is some complicated reworking of blood vessels. They will likely need to leave part of the abdomen open after surgery and then will close it later when the stomach and bowels have had a chance to expand into their new home.

With the abdominal organs moved out of the way, it is hoped that Samuel's lung or lungs will have a chance to inflate on their own and that his heart will shift back over to the left side of his chest. This moment is what I will visualize for our wee baby while I am waiting and trying not to freak out. Who am I kidding?! I will be freaking out. I may distract myself by writing a letter arguing for the hospital to pursue a liquor license.

The diaphragm is then repaired. In some cases, the hernia is small enough that they can stitch together the existing diaphragm. Since Samuel has stomach, intestine and liver up, it is certain that his hernia is too big for that and a patch will need to be used. Patches are often made out of Gore-Tex. (That's right, Gore-Tex. You will never look at your ski pants the same way again.) They are now using a substance with a fancy name that loosely translates as "pig intestine." (That's right, pig intestine. You will never look at your morning bacon the same way again.) The pig intestine is an organic substance and more easily grows with the child so there are less likely to be problems and additional surgeries down the road. 

I have no words for how Chris and I are feeling. We chose to come home and eat supper and rest as we may be at the hospital with Samuel for more than 24 hours starting tomorrow morning. But I can't really imagine sleeping tonight and suspect we will go back to the hospital for another peek and a goodnight finger squeeze. Today feels rather momentous knowing that tomorrow could bring such a milestone in Samuel's life. The ups and downs to date have prepared me for the surgery being called on account of fever. But we have prayers and crossed fingers and good thoughts dedicated towards him being ready for this next step.

That's a lot of action for our teeny little baby.

Samuel's tiny toes.

Mama and Daddy pray for protection of Samuel's heart and lungs.

Samuel comforted by mama's hand, prayer beads, and his stuffie hand-made by Auntie Denice.

Samuel's wee perfect fingers. Mama does lots of handholding and relishes every little squeeze.