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 […]

Perspective

This kid was happy as a clam to move into his new, big boy bed in a larger room this week. You’d never know it by looking at him, but Garrin still has caronavirus, one of the viruses that causes the common cold. Unfortunately, the virus makes it difficult for doctors to know what 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 […]

In the Light of Day

Everything looks better in the light of day, even more so after a few hours of sleep, and this situation is no different. On Tuesday, we received a phone call indicating that Garrin’s overnight oxygen saturation trend analysis from last week revealed significant desaturations. These results in combination with Garrin’s increased oxygen needs at home […]

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 […]