The last two nights have not been good for James. Friday night he was up a lot in the night with pain, and I couldn't really comfort him. Saturday morning we almost canceled our trip to the water slides, but the morning went much, much better, so we decided to send him - hesitantly - to playcare for the night. We told the nurses that his grandma and grandpa could pick him up early if they needed to, or that we could pick him up that night at about 9pm when we went back through Chico, if they thought he shouldn't spend the night -- depending on how the day went. He had a rough evening and night there. The nurse called us at 8pm to give us an update and say that he had been having quite a bit of pain episodes all evening since dinner, and that they seemed to happen more when they moved him from a resting position, but that he insisted that he still wanted to spend the night, so they didn't think we needed to come by and get him on our way back through Chico. He was up in the night a couple of times with pain. We picked him up this morning earlier than we originally planned. We missed church. James had a good day at home pain-wise, but he was extremely weak. He can barely crawl now.
I spoke with the neuro-surgeon's physician's assistant, Rosemary, twice today. She is very, very difficult for me. She FINALLY ordered an MRI for James, but doesn't think they will be able to coordinate an anesthesiologist for the MRI until late this coming week. She definitely thinks that there is something going on now that I have explained all of his most recent symptoms (DUHHH!!!) -- Anyway, Dr. Ciricillo's surgery schedule for this coming week is jam-packed, and he is going to be out of town the following two weeks. So, with this time frame, we are looking at 4-6 weeks before we could potentially be in surgery.
Seth and I talked all day about the possibility of just taking James straight to the emergency room at Sutter, and being admitted to the hospital that way. After debating and praying over it all day today, we finally decided that it would probably do no good to speed things up. It might make them do the MRI earlier - like Tuesday instead of Wednesday or Thursday, but that it was very unlikely to give us any sooner of a surgery date - so we decided against it.
So, as of now the plan is go try to follow our normal schedule and plans over the next 4 weeks, as best we can, and try to keep James as comfortable as possible while we wait for a surgery date.
On Friday this week, James and I will be at Spina Bifida clinic (if we're not in the hospital yet), and I will be able to speak with another neuro-surgeon to get his take on all of this. If he thinks that surgery is more urgent, and he can take James sooner, then we will let him do the surgery. If he agrees with James' current neuro that it is safe to wait another month, given James' rapid decline, then we will trust the second opinion and just wait.
Like I said, James had a good day today pain-wise, and although he is still very weak, he was alert and happy today - SO - if he has a good night tonight, then he will go to school as planned, and I will just be on-call in case he goes downhill and needs me to get him early. If tonight doesn't go well, then I will keep him home.
We're taking it one day at a time.
Please pray for our little love. We have known for quite some time now that he was losing function and that something might be going wrong in his body, but the last two weeks or so have been the most dramatic and scary, by far.
We covet your prayers. We trust in our Lord who made James and who can heal him if He chooses. Like the apostle Paul, we have pleaded with The Lord to take this thorn from our flesh, and His answer is the same as it was then - His grace is sufficient for us, and that His power is made perfect in our weakness. These trials do not seem light or momentary. It is very difficult to see the glory that far out-weighs them.
Seth and I are trying our best to have faith, and to make good decisions. We both feel like every option we have is the wrong one. We need wisdom and confidence. We are tired. We are sad. We are SO done.
I spoke with the neuro-surgeon's physician's assistant, Rosemary, twice today. She is very, very difficult for me. She FINALLY ordered an MRI for James, but doesn't think they will be able to coordinate an anesthesiologist for the MRI until late this coming week. She definitely thinks that there is something going on now that I have explained all of his most recent symptoms (DUHHH!!!) -- Anyway, Dr. Ciricillo's surgery schedule for this coming week is jam-packed, and he is going to be out of town the following two weeks. So, with this time frame, we are looking at 4-6 weeks before we could potentially be in surgery.
Seth and I talked all day about the possibility of just taking James straight to the emergency room at Sutter, and being admitted to the hospital that way. After debating and praying over it all day today, we finally decided that it would probably do no good to speed things up. It might make them do the MRI earlier - like Tuesday instead of Wednesday or Thursday, but that it was very unlikely to give us any sooner of a surgery date - so we decided against it.
So, as of now the plan is go try to follow our normal schedule and plans over the next 4 weeks, as best we can, and try to keep James as comfortable as possible while we wait for a surgery date.
On Friday this week, James and I will be at Spina Bifida clinic (if we're not in the hospital yet), and I will be able to speak with another neuro-surgeon to get his take on all of this. If he thinks that surgery is more urgent, and he can take James sooner, then we will let him do the surgery. If he agrees with James' current neuro that it is safe to wait another month, given James' rapid decline, then we will trust the second opinion and just wait.
Like I said, James had a good day today pain-wise, and although he is still very weak, he was alert and happy today - SO - if he has a good night tonight, then he will go to school as planned, and I will just be on-call in case he goes downhill and needs me to get him early. If tonight doesn't go well, then I will keep him home.
We're taking it one day at a time.
Please pray for our little love. We have known for quite some time now that he was losing function and that something might be going wrong in his body, but the last two weeks or so have been the most dramatic and scary, by far.
We covet your prayers. We trust in our Lord who made James and who can heal him if He chooses. Like the apostle Paul, we have pleaded with The Lord to take this thorn from our flesh, and His answer is the same as it was then - His grace is sufficient for us, and that His power is made perfect in our weakness. These trials do not seem light or momentary. It is very difficult to see the glory that far out-weighs them.
Seth and I are trying our best to have faith, and to make good decisions. We both feel like every option we have is the wrong one. We need wisdom and confidence. We are tired. We are sad. We are SO done.
2 comments:
I will be praying for James, I hope you get answers soon.
My dear friend, my heart hurts for you but I rejoice in your strength and patience. I am praying for you and Seth as parents and as husband and wife. Surely these times are testing of your bond, and you will remain stronger as one rather than two. I pray for James' healing and pain. He has a wonderful knowledge of Jesus' love--faith like a child. Stay strong and, despite the distance, know that I'm here if you ever need me. Love.
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