Joseph Update: We’ll be going inpatient at Children's tomorrow to prepare for a second surgery. We were in the hospital for 10 days in Mid December for surgery and it was a grueling process both in the prep and the recovery. We found out this week that he has to have the same surgery again….
This has been a really rough few days for Joseph and for us. As we were singing in church this morning this phrase “on earth as it is in heaven” came into my head quite forcefully. I can only believe it was from God because it hit me so strongly. God wants us to ask for things to be on earth as they are in heaven. That’s His will. Sin and sickness came into the world at the fall but His desire for us is to be on earth as it is in heaven. This is His desire for Joseph.
Two minutes after hearing this phrase in my head, we prayed the Lord’s prayer as a congregation. This isn’t an every-week practice for us at all at church. Tears came to my eyes that God spoke it to me and then we all spoke the words “on earth as it is in heaven” again.
Today is Sanctity of Life Sunday and our pastor prayed a special prayer praying for the tragedies of the world like abortion and sex trafficking and sickness and depression. And as he prayed, he said, “on earth as it is in heaven”. Three times in just a few minutes God brought this to my attention.
Halfway through church my phone buzzed and I looked down to see the name of our special needs director on my phone. Joseph was sweating, straining and struggling again. I had given him the strongest meds I could right before we left in the hopes that he would make it through Sunday School in his wheelchair. It was not to happen. Lucie quickly followed and helped me get him out of his chair and get him comfortable. We broke his tone by sitting him criss cross applesauce and supporting his back and neck and his labored breathing slowed and he calmed down.
Earlier this week, Thursday, our rehab doctor that has been following Joseph wanted us to come to the ER after we sent her the video of him that morning sweating and straining and in what Todd says is “dystonic crisis”. However, we went to the rehab center on both Thursday and Friday and we were able to talk her into letting us stay home for the weekend with a very strict regimen of meds and a promise to come in on Monday. This was a huge relief to us as we knew that we probably wouldn’t get the surgery until mid week next week and being home at this point is better for everyone, especially Joseph.
They anticipated that he would be able to have the surgery (again!) to replace the catheter for his baclofen pump by mid-week but they need to continue to titrate (turn down) the pump to get it ready for the surgery.
Titrating the pump means turning it down each day until he is ready to be able to have surgery and turning it up each day after surgery. This was a lengthy process the last time. It is dangerous to turn it up or down quickly. When they fixed the catheter last time they suspected that there was a blockage but they tested the new one and it worked fine. However after we went in a few weeks ago and they pulled back on the pump to check it - nothing came out. The conclusion was that another surgery was needed. This felt maddening. We’ve had to work through our emotions about having to go through this entire process again.
But in other ways this was a relief. We have been scratching our heads as to why Joseph hasn’t been responding well to the previous surgery. We have had such a hard time going down on his g-tube meds as we have turned up the pump and now at least this blockage seemed like it was a reason at least. They will replace the entire catheter and possibly the pump.
It has been difficult on everyone. As we titrate down, finding positions where Joseph is comfortable has been a challenge. The last two days of this week he couldn’t even go to school. Our caregiver, Catie’s patience has been challenged and her muscles have been tested in wrestling him into positions where he could be comfortable and figuring out now to help him.
Nights have been hard. Wednesday, Thursday and Friday nights I got about 5 hrs, 4 hrs and 3 hrs respectively. Joseph wakes up and I give him meds and most of the time he is able to go back to sleep, but I have not been able to. The way my body handles stress (even when I think in my brain that I am not stressed) is by choosing not to sleep, which makes everything worse. I taught at co-op Friday but found myself halting my words even in regular conversations because I wasn’t thinking straight I was so tired. I feel like I've been tearing up at the drop of a hat as well.
Thankfully, our caregiver Lana stayed the night last night so I kept the monitor off and took some over the counter sleep meds and slept 8 hrs, despite having what felt like a mini panick attack in the middle of the night. She is a lifesaver at night and always willing to help, despite having to set an alarm for 3 am to give meds.
Back at church today, I’d hoped to bring him and have the elders lay hands on him and pray for him. When he didn’t even make it through the service I almost regretted my decision, but we were able to bring him upstairs and several of the elders and also our friends laid hands on him and prayed for him, for success for surgery, for healing for his body and comfort, for him to know that he was loved and for our family as we navigate all of this.
Todd has been so loving to Joe and we’ve seen some answered prayers recently in his life through all of this.
That all said, our plan is for him to go inpatient at Children’s tomorrow and hopefully have the surgery mid-to late week. Last time the recovery process definitely took a lot longer than we were expecting. We are hopeful that it will go more smoothly this time. He has not vomited in a while and is coming in at a stronger place than he was before.
At the beginning of this year I felt like God gave me the word “stability” to pray for Joseph and Vivien. I don’t mind a little drama and I don’t like life to be boring but there are times with Joseph and Vivien where I am ready for a rest from the drama. Vivien has gotten so much more stable and easy to care for in the last year or so. She is vomiting less, gaining weight, has a good routine and is doing so well health wise. It has not been that way for Joseph so in thinking about the New Year, I decided to ask God for “stability” and focus on that word in my prayers.
As often happens in Bible stories - when you ask God for something and really start believing Him and petitioning, - often things seem to get worse. As I’ve written many times, God has used the illustration of entering the promised land in my life and in that story, things get worse for the Israelites before they get better.
I have been reading through the Bible and I was reminded that even after they entered the promised land - it wasn’t immediate rest and peace. They had to fight battles and take the land little by little. I feel like God is reminding me of this as we go through this with Joseph and continue to pray for the “stability” and “on earth as it is in heaven”.
We are so thankful for all the support we are receiving from friends - prayers, comfort, meals, driving our kids around etc.
We know He will sustain us this week so thank you for continuing to pray for Joseph and our family.
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