It seems like an eternity since we had our beautiful son at home with us, since we actually really felt like a family of six. I worry some days that I took those weeks for granted by thinking that we had years to spend together. When I walk through my house, seeing Garrin’s baby things brings me to tears. There are things that he has already outgrown and others that he will outgrow before he comes home, if he comes home. To be blatantly honest, I have been putting off writing this update for weeks. It’s extremely difficult to put in writing that Garrin’s condition is arguably worse now than it was before he underwent the tracheostomy. A considerable amount of testing has been done, yet the reasons for his decompensation remains unexplained.
The most recent tests included a chest CT and a heart catheterization. Neither revealed the answers, yet both demonstrated how severely damaged Garrin’s lungs are. The results of the heart cath were particularly troubling. His pressures are still higher than normal, a finding that was not a huge surprise, but did spur the start of a second pulmonary hypertension medicine. The more troubling aspect is that Garrin’s lungs and mean arterial pressures do not respond well to 100% FiO2 (oxygen), meaning that his lungs are not able to diffuse oxygen into his blood effectively.
Because of Garrin’s rough course and the heart cath results, genetic testing will be completed to see if he has a genetic condition that predisposes him to lung issues. The results of the genetic tests could come back with noting of use in terms of Garrin’s lung condition, they could come back and steer Garrin’s course towards transplant more quickly, or they could come back designating a defect or mutation that affects multiple systems, which would make Garrin ineligible for a transplant.
Transplant. We have been told for as long as I can remember that lung transplant is the option when you have no other options, that Garrin’s native lungs are his best chance, and that nutrition and time is what he needs. The mutual feeling among the physicians seems to be that Garrin’s lungs overcoming his premature birth, the damage that they received from mechanical ventilation, and the possibility of a genetic mutation, interstitial lung disease, an intrapulomonary shunt, or God knows what else, is becoming less and less likely, so we have begun to talk more about transplantation. The problematic thing about lung transplantation is that it is extremely risky and does not hold promise for long-term survival. The median survival rate is about five years, and the longest surviving lung transplant recipient in the United States has had his “new” lungs for just under 30 years.
Next week, Garrin will undergo additional testing, a bronchoscopy and an agitated echo, in search of more information. He may also take a day trip to UNMC for a ventilation/perfusion lung scan. The hope is that preauthorization for the genetic testing will be completed so that bloodwork can get sent off too. On Thursday, I mentioned my concern about the months that it could take to receive the results of the microarray and exome sequencing. The pulmonologist on service expressed a mutual concern that Garrin may not have that kind of time, so it is likely that the pulmonology team will reach out to Texas Children’s Hospital next week as well to make them aware of Garrin.
The last few weeks have been incredibly difficult for me. It seems like every time I come home, Garrin’s condition worsens. I’ve caught my brain trying to trick me into giving up hope but I know it’s only doing that because I am hurting so bad. My kids see me crying, but I try not to let on how serious things are – a conversation that we will likely have with them this weekend. Rest assured, I will never give up fighting for my baby. Never. If you are following our journey, please send up some prayers for Garrin and all of the kiddos fighting for their lives. Also, if you are not one already, consider becoming an organ donor.