Hospital Holiday day 6

Since Caleb was born, we've been quite conservative about using technology for his care. I knew that having a trach placed would open some new doors for using technology to improve Caleb's breathing, but I didn't think we would need it. Yesterday I was feeling quite heavy in my heart about using a ventilator at home. Today I feel a little bit more empowered. I think when I hear the term ventilator my first thoughts are that you use them to keep a dying person alive by breathing for them. Caleb isn't dying. His health is actually improving since we brought him to the hospital. Choosing to do some partial ventilation at home, mostly at night, could improve Caleb's lung condition and may keep him away from the hospital. Having ventilator options at home could also shorten future hospital stays because we have increased capacities for complex care at home. The option we're considering is using some positive pressure to improve the quality of breaths Caleb is already taking on his own.
We've learned how to use many machines for Caleb's care. In the hospital it seems overwhelming, but once we're at home we find a rhythm that works for Caleb and our family. Today I told the team that I was willing to go the route of getting trained for home ventilation. Caleb doesn't have to have it at this point. But I think it would be a good tool for us to have. I'd rather learn now while we're in the hospital rather than another time or in a crisis situation. I explained that I knew they would give us a regiment to follow, but I wanted them to know that once we got home, we would decide if, when and how we wanted to use it with Caleb. Once I remembered that Dallan and I will be the ones who ultimately decide how we will use this tool, I felt more comfortable moving forward. I trust that Heavenly Father will help guide us so that we don't find ourselves down a road that we didn't intend to travel.
Today Caleb had a few adventures. He had a CT scan and a shunt series done. We wanted to rule out a shunt problem before we use medication to help control his seizure break through. He's also currently hooked to an EEG for the night so that we can gather seizure data. Usually his EEG's are highly abnormal and his seizure behavior doesn't show up as a "seizure" on the EEG. We'll get the results of his shunt xrays and EEG tomorrow. Then hopefully we can begin to address some of his aspirating issues.
Caleb is just so sweet...I can't resist those chubby cheeks, pudgy feet and fluffy hair. I could just snuggle him all day- even with all of those wires in the way. I just love this little boy!

Having a cozy rest...


A nifty new trach with a flex- extendor! Now we don't have to worry about his chubby little chin covering up the hole!

Getting all hooked up to the EEG

A cozy cap to keep the EEG monitors in place.