Recovering sloooowly

Samuel continues to surprise us all with his resilience and strength. He did amazingly well following his surgery. He came off one of the cardiac medications almost immediately, even though he'd not be able to wean off of it before. An hour after surgery he was already at the lowest ventilator settings he'd ever seen. The post-operative x-ray showed lung inflation beyond what anyone anticipated given all the organs that were in his chest. The mood in his room was relieved, almost celebratory, even while we all cautiously awaited the next dip in the roller coaster that has been Samuel's young life.

There has been no crash, per se. He started having some rough spots starting Sunday night, which is to be expected given the enormity of the surgery that he just underwent, his ongoing issues with pulmonary hypertension, and tolerance to the pain meds that he's been on up to this point. They keep tweaking the pain medication to keep him comfortable. The drug that was added yesterday is incompatible with some of his other meds so he's needed yet another IV line. Finding more lines on Samuel's wee body has become complicated. A specially trained transport nurse from the Foothills came over to put in a PICC line and the other lines are placed by the anesthesiologist or intensivists.

Samuel now has a femoral line in his groin, an arterial line in his right hand, a PICC line in his right arm, and an IV in his left hand. He has taken to doing bicep curls using the numerous lines, tapes, and little splints. His feet are both unobstructed for the time being and his little toes are less swollen than they have been so I am taking the opportunity to do foot prints for him today.

So far, there have been no signs of internal bleeding around his spleen and it seems that he is accommodating all the organs that have found their home in his abdomen. His pulmonary hypertension and respiration have either stayed the same or gotten slightly better since the surgery. Some children get worse for a time post-operatively so we are happy with status quo at this point.

Samuel is still heavily sedated and gets topped up whenever he has to be poked, suctioned, moved, x-rayed or otherwise disturbed. Even so, he sometimes launches a desat as a way of telling people to leave him to rest. In these periods where he is on no stimulation, my only mama role becomes sitting in a chair in the dark and obnoxiously monitoring the number of people in his room and their ability to whisper. Oh, and folding his Nana-blankets. Gotta find me some kind of OCD behaviour for our new environment.

He has amazing care, including a regular round of nurses who love him. Laura, Kelly, Jennifer and Steph offer him nurturance in ways that I can't and are an everyday source of comfort and friendship to me. Kelly went off shift at 3 on Friday but texted Jen that night to make sure that surgery went okay. The resident working with Samuel told me that she thought of him all weekend that she was off and was so happy to see how he was doing. His surgeon checked on him throughout the night after surgery; I reminded her that she has been with us on this journey since he was first diagnosed the end of August and she told me that our Samuel meant a lot to her. The people here know that babies grow on love, not just on medical care and an infusion of amino acids.

The relief on Saturday was buoying and I started to feel almost disoriented from it. Apparently, I didn't quite know what to do without the stress of anticipating surgery every day so I went looking for a bit of trouble. Maybe his ears aren't shaped right and that means he has a genetic disorder. His eyes roll back a bit when he opens them so maybe he has neurological damage. (Forget that he has enough drugs in him to give a street addict a run for his money so of course his eyes are wonky). I realized quickly what I was doing and made myself stop, be in the moment, hold his hand, read some more Pema Chodron and a few Psalms.

I would love to hold my baby. I would love to see what he looks like without a breathing tube taped across his lips and cheeks. I would love to feed him. I would love to put him in a cute blue stripey sleeper and hat. I would love to bring him home and make him a room and yell at his brothers not to wake him when he's napping. Did I mention that I would love to hold my baby? This is becoming our "normal" with Samuel and there is not much point reminding myself that it's not normal. Deleting the big "what if" that still hangs over him, I know that the hospital is his home for the next several months.

The plan from here is to let him recover from the surgery, to wean his life supports to see what his lungs can do on their own, and to work on getting his digestive system working again with some feeds. All this needs to happen very slowly, one small step at a time with an eye to how Samuel tolerates. As Dr. Carlos always reminded us, Samuel is the boss... our persnickety but much-loved boss.

Waiting for them to come take Samuel to surgery with all of his accessories.

Mum and Daddy breathing and memorizing Samuel while we wait.

Our sweet munchkin.

Waiting for Samuel to return from surgery... 7:45 Friday evening and he's almost done.

Samuel following a major structural re-org.
That's his incision just under the left side of his rib cage.

The no stimulation regime - ear plugs and bili goggles.
(Hey Elliot! Remember these shades?! And do you like my new NG tube?!)