The “If” is Now the “When”

The “if Garrin gets a tracheostomy” has transitioned to “when” he gets it.  I’ve gotten second, third, and fourth opinions, and the consensus is that yes, Garrin will undergo a tracheostomy, a procedure where a surgeon creates an airway to be used for long-term mechanical ventilation, as well as a gastrostomy, a procedure where a […]

A Miracle

The doctor that is on this week is very familiar with Garrin, as he was one of three doctors treating Garrin from early on. It was very reassuring to hear that he shares the other doctors’ recommendations. He reaffirmed the likelihood that Garrin will need a tracheostomy, a surgical procedure in which an airway is […]

Checking the Boxes

To stay off the tube, Garrin must □ gain weight, □ maintain appropriate oxygen saturation while weaning oxygen, and □ diffuse and exhale an appropriate amount of carbon dioxide. Since being put on CPAP, he has been able to check each of these three boxes, avoiding intubation.  Unfortunately, he was not able to check any […]

It Looks Bad

I cannot breathe. Things are bad. The doctor talks about them getting worse. There is no way to tell how far along in the caronavirus cycle he is. Or how bad it will get. His lungs are still bad. A virus is the very last thing he needed. We knew that. We did everything we […]

Finding Our Way

It’s hard to believe that Garrin has already been home for more than two weeks. What an amazing and challenging whirlwind it has been! Throughout the last two weeks, I have been reminded of the ways that pharmaceutical companies, insurance companies, and even home health companies put profit over patients’ well being. I’ve spent hours […]

Graduation

Getting to this day would not have been possible without the nurses and NNPs.  They are some of the most intelligent and compassionate human beings I know. They provided Garrin with the highest level of health care possible. They spent countless hours getting to know him and his quirks, and they went to bat for […]

Busting Out

Guess what?!  The change to Enfamil AR worked!  Garrin’s NG tube was pulled on Friday, and barring any complications or shenanigans from Garrin, we are busting out of this joint by the end of next week‼️ We have already started working on the “Journey to Home” checklist. Safe sleep and shaken baby videos ✔️ Hearing […]