Captains log - Day 15 of life in a hospital room. Ensign Harrison went off to visit medical to have a minor procedure in preparation for his big surgery tomorrow. We decided to beam away from the hospital to see life on this strange planet, filled with masked people and "take out only" signs flooding the commercial district. We sampled some of the local delicacies before returning to a newly upgraded crewman ready to retire to the sleeping quarters.
Whew...what a whirlwind day! We started with an early morning PICC line to establish a good access point for medication and to access blood for labs. His IVs have been blowing after 2-3 days and this causes him a lot of pain, so we're hopeful that the PICC line will help alleviate some of the difficulty. Afterwards, we had PT come and do some stretches with him, to talk with us about inpatient rehab, and what things they might do during his recovery period. We saw Respiratory Therapy who checked on his new tracheostomy tube that was swapped out yesterday and make sure it's healing well. They have been doing vibes treatments on his chest and other things to help reduce phlegm/congestion (secretion management is a BIG thing for those with trachs) every 4 hours to help strengthen his lungs and prevent any future atelectasis. He is breathing pretty darn well and is even on room air, which is encouraging for his progress and prospective need for a ventilator when we get closer to discharge.
We had a visit from Social Work and Case Management to discuss when we might be transferred from the PICU (intensive care) down to the "floor". We're thinking it could be sometime between this Friday and next Monday, depending on how he recovers from his surgery tomorrow. After that point, we're looking at several weeks on the floor while he continues to heal, goes through rehab (hopefully he's a good candidate), and our home is prepared for his trach equipment. We were educated on some resources available to families and then they spent a good amount of time asking how we were. That was a nice and unexpected conversation since all of our energies have been focused on Harrison up until this point.
Finally we talked with our surgical team for tomorrow. We found out that we are scheduled for 8am and are the first case of the day in one of their upgraded surgical suites (aka - no risk of mold, which has been a big issue with Seattle Children's in the past unfortunately). They will be doing two major things tomorrow...(1) fusion of the C1 and C2 (possibly extending down to C3 if need be) to stabilize the spine and prevent future spinal cord trauma and (2) screwing a Halo fixation device to his skull (8 screws) which will attach to a reinforced vest to help prevent any damage to his fusion while he heals. They decided not to biopsy the lesion in the C1/C2 area due to the increased risk involved, as they would have had to cut into the dura mater (membrane enveloping the spinal cord) and then slightly move the cord itself to gain access to the lesion. The oncologists do not believe that the lesion is cancer, so they recommended that we just do regular MRIs instead to track the growth (if there is any). The surgery will take between 5-6 hours to complete and then he will be pretty out of it for the rest of the day.
We are planning to escape the hospital grounds for a bit and go on a walk for a little while. It'll be important not to be fretting, although this surgery is significantly less risky since it is just a fusion and external fixation.
MariClaire and I came up with an interesting idea that was pretty well received by the care team to get an Electromyogram (EMG) to test the nerve conduction throughout his body to get a baseline of what damage exists from his micro-traumas that he's been suffering to the spinal cord every time he flexed and hyperextended his neck. The goal would be to use this data along with PT and rehab medicine for more focused exercises and to monitor for any spinal regeneration that might occur (a possibility for Harrison due to his age).
Thank you all for the amazing support and well wishes. We are slowly getting there and Harrison is getting stronger every day.
- Jonathan & MariClaire
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