Sick... AGAIN

For the past week now Jacob has been battling an illness of sorts. He has had an on again, off again temperature, along with being extremely fussy, tired, and overall lethargic. Jacob also has a bad cough and his breathing sounds miserable. It is hard on a daily basis hearing him wheezing with very deep, almost labored sounding, breaths. This unfortunately is to be expected when he gets sick though. As stated before in previous posts, he does not have the ability to effectively clear his airways so he struggles with respitory functions. We have been watching him go through a cycle of sleep, startle, scream, sleep, startle, cry, cough, sleep... Well, you get the point. I hate to see him look so miserable and in such pain, but there really is nothing we can do. And his sleep is horrific. I feel like he is a newborn again waking every hour or every other hour just screaming. We had to skip therapy for him this week too which I am sure does not help either. We hope that Jacob starts to turn it around here soon before he lands himself in the hospital again.

A couple other updates too. Palliative Care came out this week to do a home visit to see how Jacob was doing. We expressed our concerns how he is still very high toned and how he can be stiff as a board when you're holding him. They discussed some different options but really it sounds like more medicine is the key for now. The good news is Jacob's appointment with the physiatrist got bumped up to this Monday. A physiatrist is a rehabilitation and pain management doctor. They will hopefully help us figure out ways to keep him comfortable and not as stiff with his tone. Jacob also got a new bathing chair this week since he cannot sit up on his own and he has definitely outgrown his infant tub. We will try this out soon and hopefully it will make that time a lot easier and less stressful. I think Dominic likes to use it as a lounge chair in the living room more so then having Jacob use it in the bathtub. I found him on it the other day reading a book. Oh Dominic, never a dull moment with you!

Here's hoping this is a better week for Jacob!