Hospice

This past week has been a pretty emotional one for Josh and I, as we've made the extremely difficult decision to start Jacob on hospice care and focus on palliative care -- keeping him comfortable and as pain free as possible. We have mixed emotions about this decision and to be completely honest, I have been pretty much overcome with the sad realization that comes with this unfamiliar territory. Before Jake's diagnosis, hospice care is simply not anything that Josh and I ever imagined we would have to consider for our child.

When we met with Jake's pediatrician last month for his regular 2-year check-up, we had the uncomfortable conversation about considering do not resuscitate (DNR) orders in the event that Jacob were to have another serious hospitalization, as he did earlier this year when he had RSV. This was not the first time that we have had discussions surrounding this topic, but I think it was truly the first time we let it sink in because we knew in our hearts the timing was appropriate. Josh and I had another discussion with Jake's neurologist just last week, which pretty much solidified the need to engage hospice in Jake's on-going care. I was an emotional wreck when I left that appointment and have been pretty teary for the last few days. Even the littlest things have set me off, including a little boy who was wearing a spider man mask at the grocery store, which sent me into tears. For those who know me well, you know that I'm not one to share such personal feelings so freely. I am sharing this information so that we don't have to continue to share it over and over again, as this is just a lot for us to come to grips with at the moment.

We have seen quite a bit of progression in Jake's disease over the last month or so. Despite starting Jake on Keppra (anti-seizure medicine), his seizures have worsened. Jake now has 3+ seizures a day and they've increased in severity. We have been working with his neurologist to evaluate the situation and even got blood work done to see if perhaps his body was having trouble metabolizing the medication -- either too fast or too slow. The blood work revealed normal levels of medication, but it did indicate his platelets are low. The low platelet count could be attributed his enlarged spleen, which may be harboring too many platelets or it may be due to his seizure medicine. We suspect the enlarged spleen to be the cause. That being said, we started Jake on a new anti-seizure medicine called Phenobarbital and are working to wean him off the Keppra. It's still too early to tell, but we feel it may be helping to decrease the number of seizures a day.  In the meantime, we will check his platelet count again this week.

In addition to his seizures, Jake has also lost virtually all control of his arm movements. The hand tremors that began over the summer have progressed into spastic movements in his arms and he can no longer control the way his arms move. He has also lost the ability to hold his head upright, so we have to be very careful in supporting his head. This progression is all relative to neurological progression of the disease. It has also become apparent that Jake is often uncomfortable when we try to carry him around and he has become increasingly irritable. Overall, there have been a lot of changes in a short amount of time. All these things combined, have lead us to the decision that we know is best for Jacob, which is to focus on comfort care and keep him as pain free as possible. We met with Angel's Hospice yesterday and Jacob will now have weekly in-home visits by a nurse who will help monitor his care. Josh and I have always felt very strongly that we want to focus on quality of life for Jacob. Right now, we're focusing on maintaining as much normalcy as possible, but understanding his limits and helping to keep him comfortable. We are trying our best to be as selfless as possible during this process because it will allow us to do what's best for Jake.