One of the things I almost didn’t let myself really consider was that Littlest would end up with a trach. I didn’t want him to have the breathing difficulties that would necessitate it, I didn’t want him to have the pain/surgery/long-term inability to be held that would happen after a trach, and I didn’t want to have him struggle with speech and language in the long-run.
But, his stridor was progressively worsening, to the point that after his shunt revision on Friday (10/28) he was stridorous with every breath, and we were transferred to the PICU on Sunday because he just couldn’t stay oxygenated or calm enough to breathe regularly. We had put him on heliox because of how severe his stridor got, and that really helped him. Helium is molecularly more dense than oxygen, so when you combine the two, it causes the oxygen to “eddy” less and “flow” smoother in an airway that is turbulent, and man, did that help him, but it was a short term solution, and purely therapeutic (not something he could go home on). Since Littlest didn’t need much oxygen (he was really only desatting because he’d give up on trying to breathe effectively), we put him on an 80% helium/20% oxygen mixture until we could schedule the trach.
Wednesday (11/2) he had the trach placed, and ohmyword, he just had a 180° difference in anxiety levels (as shown by his heart rate), and his sleep patterns! He’s sleeping really well now (vs. waking up every 10 minutes!) and his heart rate has been near-perfect. It only stresses when he is getting suctioned, but imagine the dentist’s suction tube going down your throat, and you’d probably stress too!
We’re looking at a decompression, detethering and possible shunt placement on Tuesday(11/8) of this week, the shunt is on the table if the dye-contrast that Dr. Woodward is running on his ventricles makes her feel that a shunt would be valuable. This will mean another two+ week stay in the hospital, and the end of it will be us in rehab, learning to care for Littlest’s trach and change all the necessary things.
I counted it up, he had a 18 day stay in the NICU at birth, a 17 day stay (with 5 days in PICU) for the first decompression, a 5 day stay when we were readmitted for observation and then sent home on oxygen, and now 10 days (so far) into what could be a month long stay for trach/decompression/etc. That’s 50 days in the hospital. Eesh.