Tag Archives: Palliative Care

Palliative Care for Gideon

Last Monday evening, Laynie had her first volleyball practice of the season. Kevin offered to stay home with our other kids, but I thought it would be great for us all to go and watch her practice. It was not my best idea. Nya was crawling on the floor, Josiah was climbing on everything. We washed little hands and headed home to bathe the kids, with the hope they wouldn’t get sick.

All of our best efforts were useless. Tuesday morning, Nya was puking by 9 am. After quarantining her and cleaning her vomit all day, I prayed that the others would be okay. Unfortunately, Laynie woke up at 4 am Wednesday morning puking with the same stomach bug. And by Wednesday evening, Gideon began puking too. It was only a matter of time before me and my mother were also sick.

I’ve been a parent for almost 10 years now. And I can honestly say, I cleaned more puke last week than in all my 10 years combined. Thank goodness my sister in law and mom were there to help me while Kevin was at work! As a family, we have never been hit with an illness like that. (Kevin and Josiah were fine. Apparently their stomachs are savage.)

Thankfully it was a 24 hour bug for the majority of us. Unfortunately, for Gideon, the puking and diarrhea lasted for 3 days straight. He couldn’t keep anything down. It whooped him and us. We knew his recovery wasn’t going to be easy. When you factor in his degenerative genetic disorder, the recovery process is even more complicated.

All the kids have been loving Gideon this past week. It’s been heart warming to see.

So here is the point of me telling you this story. Gideon has not bounced back as we had hoped. When he was hospitalized back in May of 2018, we met with a palliative care team, just to have people in place, should things go south for Gideon. Fast forward to today, we called the team together and now have palliative care for Gideon.

Gideon will be receiving extra care in the home to help him (hopefully) get over this hump. We have tons of support in place but would appreciate your prayers during this time as we wait to see what Gideon will do.

Today was the first good day since he got sick. Gideon’s intake was good, he pooped (finally) and we even got some smiles and giggles out of him! But even with all those positive changes, it’s looking like his little body has just begun to wear out. Peroxisomal disorders come with a host of other problems and it just all sucks.

So the big question-

Could he pull through? He has before. And we hope he does again. But our goal for Gideon has always been quality of years over quantity of years. Should this be his last battle, Kevin and I feel confident that we have done everything possible to give him a joy filled life in spite of his circumstances.

So now we wait.

For our family, we also trust in the Lord. Psalm 139:16 reminds us that all our days were ordained before any of them came to be. So we trust in God’s timing while we wait.

Finally, smiles and giggles before bed tonight.