James did something "normal" today....he went to the dentist. Things like that get pushed to the back burner when dealing with the tumor. But, he was well overdue for a visit. In fact, he has several teeth that need repaired. Pray that it goes well for him. We will spread it out over 2 or 3 visits.
Johannah is next week.
Wednesday, August 20, 2008
Sunday, August 17, 2008
James is doing quite well
Many have asked what the results of the MRI are. Well, that's a tricky questions because we were not looking for change, but an answer to what we already knew was there. The official MRI report simply says, "No change." So, our questions will not be answered until I am able to get the disk to Houston. Of course, my own questions won't be answered until I can look at it myself.
To be honest with you, I am "dragging my feet." James is doing so well. His memory is almost back to baseline, which is such an answer to prayer because I really expected it to take most of a year. His head is healing up quite nicely and his hair is even coming back. He is really, really doing well. So, I am in no hurry. Maybe I should be.....but I just have this overwhelming desire for James to simply enjoy the rest of the summer.
But, when I get that disk and when I get it to Houston and when we see what it shows....I will certainly let you know. Then, we will ask God which direction He wants us to go. For, if God is with us, it doesn't matter where the path takes us.
Isaiah 43:16 "Thus saith the LORD, which maketh a way in the sea, and a path in the mighty waters;"
To be honest with you, I am "dragging my feet." James is doing so well. His memory is almost back to baseline, which is such an answer to prayer because I really expected it to take most of a year. His head is healing up quite nicely and his hair is even coming back. He is really, really doing well. So, I am in no hurry. Maybe I should be.....but I just have this overwhelming desire for James to simply enjoy the rest of the summer.
But, when I get that disk and when I get it to Houston and when we see what it shows....I will certainly let you know. Then, we will ask God which direction He wants us to go. For, if God is with us, it doesn't matter where the path takes us.
Isaiah 43:16 "Thus saith the LORD, which maketh a way in the sea, and a path in the mighty waters;"
Tuesday, August 12, 2008
MRI with spectroscopy
The pediatrician that we have established with here in Charlotte has been so wonderful. They have bent over backwards to make sure this MRI with spectroscopy for James gets scheduled. In fact, it is tomorrow at 7:00 p.m.
I sit here and I ask myself, "What do I ask people to pray for?" To be honest, I don't know. I know that God is in control and I know that He has cared for James through every step of this brain tumor journey. But, I'd be lying if I didn't say that I'm scared. I don't know what this MRI will show. I don't know if it will let us continue on this road or force us to make a turn. James is doing well. His memory is getting better. His incision in his head is healing now. He feels well.
I think that my fear stems from the knowledge of what James has already been through. The mom in me doesn't want him to have to endure any more. I want the MRI to show that the tumor didn't really grow. I want it to say that what we saw last month was just swelling....that is now going down. I want James' days to be smooth going and care-free. But, I don't know if that will be the case.
So, maybe I should be asking people to pray for PEACE. A peace in knowing that WHATEVER the MRI shows, God is still in control, He is still good, and He will continue to walk with James (and our family) down whatever path this takes us.
"Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee." Isaiah 26:3
I sit here and I ask myself, "What do I ask people to pray for?" To be honest, I don't know. I know that God is in control and I know that He has cared for James through every step of this brain tumor journey. But, I'd be lying if I didn't say that I'm scared. I don't know what this MRI will show. I don't know if it will let us continue on this road or force us to make a turn. James is doing well. His memory is getting better. His incision in his head is healing now. He feels well.
I think that my fear stems from the knowledge of what James has already been through. The mom in me doesn't want him to have to endure any more. I want the MRI to show that the tumor didn't really grow. I want it to say that what we saw last month was just swelling....that is now going down. I want James' days to be smooth going and care-free. But, I don't know if that will be the case.
So, maybe I should be asking people to pray for PEACE. A peace in knowing that WHATEVER the MRI shows, God is still in control, He is still good, and He will continue to walk with James (and our family) down whatever path this takes us.
"Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee." Isaiah 26:3
Thursday, August 07, 2008
Our worst ER visit ever
James was diagnosed in 1998 at Riley's Children's Hospital in Indianapolis, Indiana. He received most of his care over the last ten years at Children's Memorial Hospital in Chicago, Illinois. He has also been to Texas' Children's Hospital in Houston, St. John's Hospital in Springfield, Illinois, NYU in New York, Children's Hospital of Philadelphia, and now Levine Children's Hospital in Charlotte. Needless to say, we have been to a lot of ERs and met a lot of doctors, many with the typical, cocky, "God" syndrome.
BUT, this neurosurgeon that we met last night at Levine Children's Hospital is the worst doctor we have ever met, by far, bar none. Although James clearly had a pocket of infection in his scalp, sitting right above shunts, he did not want to do anything for him then because "it was 7:00 Wednesday night." "We'll have someone look at it tomorrow." The more I tried to emphasize my concerns that this was a potential risk for disaster, the more he emphasized that I was not the doctor and how dare I try to "manage his care." Hmmmm.....I think that's been my job for the last 10 years. Twice, he pointed his light at me and said, "You are wrong! You are NOT the doctor and I am not going to rush him to the OR just because you want me to." So.....how about rushing him to the OR because he NEEDS it. We were clearly dealing with an ego problem. By the end of our five minute conversation, and many blantant condescending remarks from him to me, I was shaking and in tears - scared more than anything of what was going to happen to James. My sister demanded a Patient Advocate to come and then Dr. Jekyl turned into Mr. Hyde.
Thankfully, the plastic surgeon showed up and agreed that the wound definitely needed debrided in the OR, but still deferred to the next day - I think out of respect for the neurosurgeon. I simply informed them that if they dragged their feet at caring for the problem and anything happened to James as a result, I WOULD hold them responsible. Consequently, they decided they would be willing to debride the wound under conscious sedation in the ER.
Interstingly, this neurosurgeon who at first insisted that there was NO risk and that there may not even be an infection (even though the wound was clearly draining pus), then decided to look at the scans, confirm the infection, and see that, although the shunts were not in the immediate vicinity of the infection, the shunt catheter was directly beneath it - maybe even the cause for the infection in the first place. That doesn't sound like no risk to me.
They sedated James, debrided the wound (boy, was I thankful he was sedated - that was one disgusting wound), and cauterized it with silver nitrate. Then they sent us home with more of the special dressing and the silver nitrate. I'm not sure if that is something that is usually done....I suspect they just wanted to get rid of us.
Now, we will pray that the wound will heal properly and that I can find an appropriate neurosurgeon for James, because I will NOT be going to the group that that doctor is from.
BUT, this neurosurgeon that we met last night at Levine Children's Hospital is the worst doctor we have ever met, by far, bar none. Although James clearly had a pocket of infection in his scalp, sitting right above shunts, he did not want to do anything for him then because "it was 7:00 Wednesday night." "We'll have someone look at it tomorrow." The more I tried to emphasize my concerns that this was a potential risk for disaster, the more he emphasized that I was not the doctor and how dare I try to "manage his care." Hmmmm.....I think that's been my job for the last 10 years. Twice, he pointed his light at me and said, "You are wrong! You are NOT the doctor and I am not going to rush him to the OR just because you want me to." So.....how about rushing him to the OR because he NEEDS it. We were clearly dealing with an ego problem. By the end of our five minute conversation, and many blantant condescending remarks from him to me, I was shaking and in tears - scared more than anything of what was going to happen to James. My sister demanded a Patient Advocate to come and then Dr. Jekyl turned into Mr. Hyde.
Thankfully, the plastic surgeon showed up and agreed that the wound definitely needed debrided in the OR, but still deferred to the next day - I think out of respect for the neurosurgeon. I simply informed them that if they dragged their feet at caring for the problem and anything happened to James as a result, I WOULD hold them responsible. Consequently, they decided they would be willing to debride the wound under conscious sedation in the ER.
Interstingly, this neurosurgeon who at first insisted that there was NO risk and that there may not even be an infection (even though the wound was clearly draining pus), then decided to look at the scans, confirm the infection, and see that, although the shunts were not in the immediate vicinity of the infection, the shunt catheter was directly beneath it - maybe even the cause for the infection in the first place. That doesn't sound like no risk to me.
They sedated James, debrided the wound (boy, was I thankful he was sedated - that was one disgusting wound), and cauterized it with silver nitrate. Then they sent us home with more of the special dressing and the silver nitrate. I'm not sure if that is something that is usually done....I suspect they just wanted to get rid of us.
Now, we will pray that the wound will heal properly and that I can find an appropriate neurosurgeon for James, because I will NOT be going to the group that that doctor is from.
Wednesday, August 06, 2008
Back to the hospital
We are heading back to the hospital and could use your prayers. When we were in the hospital last time, we noticed that the incision on James' head was getting a build-up of some crusty stuff. I asked the neurosurgeon about it. He said it was okay, don't worry about it, just keep it clean and let it fall off by itself. Well, we have kept it clean, even cleaning it with peroxide, and had him shower daily. But, it wasn't coming off. In fact, it was getting thicker. So, I had decided to put some baby oil on it to soften it and try to get it off. Well, today when I started working it up, it was completely infected underneath. Needless to say, I am not happy about the advice I was given - it should have been dealt with long ago. So, we are heading straight to the ER of Levine Children's Hospital to get it cared for. Please pray that it will not cause serious problems.
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