I got to spend about an hour with Linus before being taken to pre-op. My dad, Trina and I all took turns holding WeeMan as we waited for them to come take him from us. Every few minutes someone new would come by to explain their role in Linus's care and have us sign their department's waivers and releases. I got a good feeling from each of them and it was reassuring to know he would be in their hands. When they finally came to take him, he was calm and even flirted with the woman who carried him off. Seeing him watch us over her shoulder as they walked away completely undid me. Trina and I held each other and sobbed while my dad wrapped his big arms around us both. I kept seeing the image of his sweet little face peeking over her shoulder and couldn't help but wonder if that was they last time I'd see my baby.
A nurse came down and gave us updates every hour and a half. She never had any specifics and that was kind of maddening to someone who finds comfort in the details. The time seemed to fly by or creep along with no real rhyme or reason. We were given a very basic timeline of 6-10 hours so we were shocked when the "update nurse" said she believed the surgery was nearly finished around the 6 hour mark. We learned that our surgeon was able to create a better than "best case scenario" set of procedures! Instead of doing the mitral repair, aortic annulus expansion and Ross procedure, he was able to repair both the aortic and mitral valves. This change of plans, like most things, has pro's and cons. The pros are enormous in that a less invasive procedure has a lower death rate, a faster healing time and the big plus of not having any foreign material added. The con would be that his valves are still far from normal and he'll need more surgery in under 5yrs instead of 7-10yrs. When I asked the surgeon to speculate on when Linus would need another surgery and what it may be, he was very vague. When asked what the chances were that he'd eventually need both valves replaced, his answer was a definite 100%. In the mean time, we just hope that Linus's own revamped parts take him a long long way.
Seeing Linus after surgery was both a shock and a relief. I was SO grateful he made it through surgery without any major complications and he didn't look as bad as I was imagining. At the same time my poor tiny baby was a tangle of probes, stickers, wires and tubes. He was surrounded by machines and was, of course, now sporting the "cardiac warrior badge" on his chest. I was afraid to touch him, he looked so fragile.
These past few days have been rough. It seems like every hurdle we get over leads us to another problem to tackle. It's exhausting riding this emotional roller coaster. Monday was plagued with high left atrial pressures and low venous pressures. He was anemic and received 2 blood transfusions. Then he started get agitated and had to be put under a deeper sedation.
Tues his atrial pressure was mostly under control, but every time he started coming around, his blood pressure would drop drastically. This is exactly the opposite of "normal". Once again they had to keep him deeply sedated. They were using both morphine and versed every few hours. They were also tweaking 2 pressure meds, 2 diuretics and drastically lowering his fluid intake. Nothing seemed to work. To combat his crazy pressures and his anemia at the same time, they used a controversial tactic. A doctor came in and aspirated 100cc's of his blood an replaced it with 30cc's of packed red blood cells. The thought was that while he had too much blood to let his heart beat properly, it was dilute blood causing his anemia. This crazy trick worked...for about 3 hours. Then the pressures were back to being nuts. *sigh*
Wed his wonky blood pressure issues resolved themselves and they were able to remove the pressure probe from his heart. He then popped a fever of 102' so they started him on antibiotics and cultured his blood, sputum & urine. Since he was finally allowed to wake up properly, he started breathing very well on his own. After some volume support trials he was able to be extubated. He was instantly calmer with that tube out. His hourly blood test results came back a little while later. We learned that his sodium levels were alarmingly high. Only 2 points away from the "seizure inducing level" apparently. They started putting a small amount of sugar water through his NG tube and upped his IV fluids just a bit. This kid does is usually on a strict fluid restriction so it's a difficult dance. About an hour later Trina was able to hold him for the first time. It was obvious that moving him was uncomfortable, but he was so at ease in Trina's arms. Later when she put him down he was very upset. Poor little guy is used to lots of snuggles and he's been in bed for the majority of the last 4 days. Last night he blew his arterial line after having it in a solid 3 days. That's not bad for him. Luckily they still have a central line they can use for blood draws and such.
Today brought us slightly lower sodium levels, another blood transfusion, another fever and some vomit. Linus was allowed to drink some clear electrolyte fluid today. His first oral feeding since Sunday night. He took 3oz like a champ. That's more than he's been able to take orally in a long time. Later on they decided to try him on a little breast milk. That didn't work out so well. It all came back up. It's not a big deal, just a small back step. We're SO used to those. I actually get a little nervous when things go "too right." They were able to remove his chest tube, then tonight he blew one of his IV's, has an elevated respiratory rate requiring diuretics and was taken off one of his pressure meds. All in all things are going ok. Never a dull moment with this kid. It's scary then boring then emotional then confusing then scary again then tiring then sweet...and on and on and on.
Laughing at Mama in Pre-Op.
Hanging out with Papa.
Waiting is tiring.
My poor sweet boy after surgery. :(
When he got back from surgery, his binky was in a specimen jar. :)
Starting to come to on Wed. Such sad eyes.
The knot in one of his blood transfusion lines looked like a heart to me. :)
Finally off the vent!
Morphine dries your mouth out something fierce. He was NPO but we were able to moisten his mouth with this little sponge. He'd get so mad when we took it away.
Trina was able to hold him for the first time Wed evening.
A photographic tour of Linus and his gear post-op. May be too graphic if you have a weak stomach or soft heart.
All the equipment keeping him stable.
Right after surgery. He was so sedated his eyes wouldn't stay closed. They were drying out so I had them order him up some goo to keep them moist.
His ventilator tube. He couldn't breathe on his own for most of the first 2 days. The tube in his left nostril went into his stomach.
This little container in the bottom right collected the nasty stuff suctioned out of his stomach.
This chest tube siphoned of extra fluid in his chest cavity so it couldn't cause pressure on his lungs or other organs.
This box kept a slightly negative pressure in his chest tube and collected the fluid so it could be measured.
The little metal spiral under the "X" of tape is a pacer wire imbedded into his heart muscle. The clear tube to the bottom left of it is a probe inserted into his left atrium to read the pressures there.
In the case of a wonky heart rhythm, this external pacemaker would be hooked up to the pacer wire so they could regulate him temporarily until it was normal again.
WeeMan is back in soft restraints. Can't have him flailing about or ripping out any of these tubes or wires. There's a peripheral IV in this wrist.
He has a PIV in his forearm (blue butterfly), an arterial line in his wrist (tubes and syringe) and a pulse oximeter on his hand (glowing red light).
He's got a central line in his left femoral vein that has a catheter leading into his heart. They used this for his blood transfusions, to draw blood and to measure his central venous pressure. The blue tube coming out of his left diaper leg is a foley catheter. It drains his urine.
This box on the end of his bed collects the urine for examination and measuring.
The pad on his right foot takes a constant temperature reading. The band on his left ankle is his ID badge. The white/orange deal in the left bottom corner is a teeny blood pressure cuff.