It's been a few days since we've posted and Harrison's been doing pretty well, all things considered. Today marks the 2nd full week we've been in the hospital. Thank you to everyone that has been helping bring and take supplies/bags for us. I swear that we're as adaptable to this sleeping/living situation because of our vintage Volkswagen Camper haha.
We had a scary moment in the night a couple of days ago that ended up being nothing in the long run, but it was super noisy - one of the sensors went out on his ventilator and they spent almost an hour adjusting and swapping out parts to correct the alarm before they gave up and just swapped out the entire vent itself. He was fine during this and all of his levels stayed good, although his nurse certainly got a workout! :p Nothing quite like 8+ people in the room at 4am! haha
Aside from that, we've been spending our days helping Harrison pass the time. His personality is back and you can tell he gets easily bored when he's feeling well. He has an iPad that is playing his favorite show (Little Baby Bum!) but that only works so long before he needs something else (reading, stretches, light therapy, etc.).
They've been advancing his feeds trying to get it up to optimal levels so that he's as healthy as possible going into Wednesday for his big spinal surgery. His gastroparesis (delayed stomach emptying) made an appearance a couple nights ago and he ended up vomiting a few times which made a BIG mess (that poor c-collar!). They got him all cleaned up, stole pads from another collar that mostly matched the one he got from Mary Bridge and he was ready to continue his reign of chaos.
Today at 10am, he'll get a PICC line inserted to help establish something more reliable since he keeps blowing IVs which hurt and really make it hard on the staff to find an alternative site (he is a HARD stick...remember that reign of chaos comment from earlier? haha). This is also going to be needed when he goes into surgery on Wednesday. Then later today, the ENT guys will do his trach change. This is routine and they essentially remove the temporary one and replace it with a permanent one that will better support and protect his airways. This is also needed in preparation for the surgery since that area of the spine is damaged.
So today will be a big day. He'll be pretty worn out from all the commotion and will hopefully just "relax". His pain is under control and he really doesn't need anything other than just Tylenol, but we do have access to stronger stuff if need be.
We're on track for the big surgery on Wednesday...they'll go in and (1) biopsy that lesion on the C2, (2) fuse the neck to stabilize the C1 and C2 region (plate and screws), and (3) place a Halo vest to help the fusion heal since he's so young and his bones are still soft.
So appreciate all the prayers & support we've been getting lately. It means so much to know our little guy is lifted up and loved on across the globe!
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