I haven’t posted anything since that update about our hospitalization last summer. It’s long overdue… I know. Especially since so much has happened. The truth is, I was waiting to be out of that dark hole that the hospitalization put me in before I wrote anything. It was the first real time I grieved… not for our loss of normal – that has been there from the beginning of our journey – but for the difficult, painful life he has to lead. Filled with thoughts about whether we were prolonging his suffering. And really, how do you talk about that?
When I wrote that post, we had been in the hospital for 22 days. It would be another 28 days before we went home, making it our longest single hospitalization. He had more issues with fevers, lethargy, low blood pressure, oxygen, etc. etc. etc. And during that time, I feel like my entire being was hanging by the thinnest thread about to break. Special needs life is HARD. But 50 days in the PICU, discussing matters of life and death almost daily, and also missing out on our baby girl growing by leaps and bounds? Exponentially harder. After we got discharged, he was home for three weeks (most of that time getting on and off again fevers) before we were admitted back into the PICU for 10 days. Then he was back home again for two weeks before being admitted back in for five days. It was a tumultuous summer, as you can tell. And the thing is, we don’t really know what caused all of it. We know he went to septic shock at least twice, that he continually had dangerously low blood pressures, that he had temperature irregularities that made his temp swing from 95 degrees to 103 degrees in a span of hours, that his lungs became even more compromised while battling these infections. Nothing came back positive on the tests (possibly because he started antibiotics before they drew the blood for the tests) so we only know he got some sort of (most likely bloodstream) infection that, in turn, caused respiratory issues.
So that was May through August. During that period, we also:
- Moved homes. (Literally the day before he was extubated.)
- Were entered into hospice care. (More on this some other time.)
- Started getting home health nursing.
- Got an oxygen concentrator to use at home.
- Made progress on a gene therapy program for PIGA-CDG. (Much more on this later.)
- Went on vacation. (Yup, above all odds, we managed to squeeze that in between two hospitalizations. Maybe more on this later.)
With that extra support, even though he was also sick for most of September through December, we were able to avoid hospitalizations and manage his illnesses from home. Last Friday, around 3 a.m., we weren’t able to keep his oxygen saturations high enough even with maxing out the oxygen we had at home, so we brought him into the ED and ended back in the PICU. Official diagnosis? Bacterial pneumonia that caused him to go into septic shock. He got a 105 degree fever, a high heart rate and low blood pressure. But he seems to be responding well to treatment this time around, so hopefully it’ll just be a few days more to get him off the oxygen and the infection out of his system with the IV antibiotics.
Hospital time always allows me some time to actually sit down and write, so hopefully I’ll get to those “more on this later” topics shortly. Especially the gene therapy stuff; Steve has done so much work on this and made a lot of progress bringing the right people together. But that is what’s been going on the last few months (in a nutshell). Till next time. ❤
We love you all. Your love and strength for your family is simply amazing.
We love you all and are fighting right along side you.
💙💚💜Nikki and Hunter