Well it’s been a while since we’ve posted an update. Life passes quickly in a hospital, yet time seems to move so slowly too. We’re about a month out from his last surgery and Harrison is continuing to heal, grow, and recover some of the abilities affected by the spinal cord injury. The halo is about a month away from the earliest that it could come off, but an extra month or so would be ideal to ensure his fusion is fully healed.
Trach training has been progressing well and we’re meeting three times a week to go over important aspects of Harrison’s home needs/care once we’re discharged. MariClaire and I have been able to each do a trach change on Harrison and it was horribly nerve wracking but went well, all at the same time. We feel better being empowered to swap out his trach as needed or even to fix a problem on the fly if it dislodges while we’re out and about. It’s not exactly “fun” but thankfully it’s pretty painless for Harrison now that his false track is healed and we don’t have to fear an incorrect placement (that happened twice about a month ago, which was quite traumatizing for everyone involved).
We’ve started HME breaks which means that Harrison is getting to have periods where he is disconnected from his ventilator and is forced to breathe on his own for brief periods of time under supervision. This is a Heat Moisture Exchanger which provides tracheostomy humidification for Harrison - otherwise, it would be super dry air and would increase his secretions, which could lead to mucus buildup & plug his trach. They started him at 15-minutes once a day and after nearly a week of breaks, they’ve decided he’s ready for longer stretches. As of today, he did his best stretch and went 38 minutes and was okayed by his pulmonologist to do x2 30-minute stretches off the ventilator per day. They have also adjusted his ventilator settings so that he has a little extra support when he sleeps & his body can keep its CO2 levels lower, so that it can get stronger during the “workout” when he’s on an HME break. We’re thrilled and very grateful that this is a real reality for Harrison and gives us hope that he can continue building his endurance to have even more substantial breaks.
His G/J tube feedings are going well also - there is still some vomiting but it’s FAR LESS than what it used to be. The nausea seems to be under control, so he’s no longer on scheduled medication for that which is a big relief for us (the less, the better!). The team has also started condensing his feeds as they are going into the small intestines (which can’t expand like our stomachs). We’re down to 18 hr. feeds, which means he gets two 3-hour breaks during the day where he isn’t connected to the pump. The hope is to see if we can go down to 16 hr. feeds which would be the lowest they’d want but it would give us two big 4-hr. stretches where he wouldn’t have to be hooked up to his feeds. This plus some of the HME breaks would mean that he wouldn’t be on any lines other than his vitals and Farrell venting bags (helps relieve gas in the stomach). These are fairly easy to manage and gives us a semblance of normalcy when we can just cuddle with him.
Finally, we’re to the point where nursing is the biggest barrier to discharge. We have locked down weekday day coverage (M-F) which is great. We are still in need of weekday night coverage and weekend coverage (both night and day). Someone has to be awake, alert, and must have eyes on Harrison at all times in case he needs suctioning or is having oxygen saturation issues. Our care team has a lead on a potential night shift nurse and we got a call from a new nursing staffing agency that felt confident they might have leads for us. As it stands, we’ll likely be here another 2 weeks but we’re doing everything we can to prepare for discharge so that once nursing is locked down there is nothing preventing us from going home.
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