For those of you not on Facebook, let me catch you up:
After 4 days of trying to stay on top of this nasty virus at home, our PCP decided on Friday to admit Struthers to the hospital. Admittedly, we get used to ignoring his home alarms sometimes, because when he gets squirmy or kicks, they will lose signal. But at 6am Friday morning, he alarmed and I could see on the monitor that he was still fast asleep, not moving. So Eli and I both jumped up and ran upstairs, where we saw his pulse oximeter reading as low as 68, hovering in the 70’s, with a really good signal. So I cranked up his oxygen as high as 1-liter (which is our hospital trigger-point), and his numbers still only went into the 80’s. So we ended up waking him to give him a nebulizer treatment and he recovered quite nicely, bringing his numbers back to over 90. We already had a pediatrician appointment set for first thing Friday morning, so we went, halfway expecting they would send us to the hospital. The doctor was on the fence about whether he needed to be in, since he was responding so well to the nebulizer and we had a lot of capability to monitor/treat from home. But as he talked about it more, he decided the one thing the hospital could do that we couldn’t was suction. And the name of the game would be to keep this stuff out of his lungs. Because it would most definitely be pneumonia if we let it get there, because his lungs are just not strong enough to cough it up.
So…long story short, that’s where we’ve been since Friday morning. It’s been up and down since, but turned a corner for the good yesterday. The virus has not gone to his lungs, but it’s taken a lot of proactive ‘stuff’ to keep it from getting there. He’s been on a nebulizer cocktail (3 drugs) around the clock, sometimes as close together as every 2 hours, depending on when he begins wheezing or crackling again. He’s getting prednisone via his G-tube (thank goodness!) and is still on his maintenance regiment of another 3 inhaled steroids and bronchodilators. We’ve been weaning everything down since yesterday, and as of tomorrow we will be off the prednisone entirely. He’s such a happy, content little fella that it’s often hard to see how sick he is. He fools us lots, with those bright eyes and smile, then he just tanks and keeps his numbers up but works really hard at it. As I was typing this, his hospitalist called and they will keep him in hopefully just one more night, and they’re trying to get us a home suction unit. We were all borderline on whether he could come home today, but decided to give him another day in to just keep suctioning that ever-thickening ‘rubber cement-like’ icky stuff out of him. Also, he shared his illness with Mommy when he coughed and sputtered directly into my face, and we just can’t risk my giving it to him again.
PSA: This virus (and many others) lives on surfaces for 8 hours!!! So wash, wash, wash!!!
3 things we are grateful for:
- Eli has been able to give me some relief and time to recover at home.
- Struthers is his happy, smiley self, even when he sounds like a freight train!
- Cami got some good rest yesterday and slept well in her own bed last night.
3 things to pray for:
- To not have this thick mucus get into Struthers’ lungs and settle.
- To be able to get the home suction unit and bring him home as soon as tomorrow.
- To heal Cami and protect Eli and work things out so that we can take care of Struthers.
Comments imported from CaringBridge (4 comments):
Praying, praying, and praying! So thankful for your reports! Much Love,
—Jill, January 12, 2016
—Rosalyn Forsyth, January 11, 2016
Praying for successful treatment and everyone feeling much better soon.
—David Summerall, January 11, 2016
Thank you for sharing all the challenges you are all facing. God certainly has shown you that young Master Struthers is obviously full of love and a bright future based on your amazing descriptions of his loving emotions, smiles; and vision through His eyes. We are praying for the things you requested. And a whole lot more. You will find strength in numbers too! Remember what I told you we learned from the late Apollo 15 astronaut and dear family friend Jim Irwin: “Decisions determine destination!” We know it is a good decision to spend one more day in the hospital. Your strength is amazing. And we love you all with all our heart and soul. Rick, Billie and all our family ….
—Rick and Billie Broome and Family, January 11, 2016