James was extubated (breathing tube taken out) this morning about 6 a.m. and is doing very well. They lowered some of his medication to try to help him wake up more. He has to wear a BiPAP mask for now to ensure that he's breathing adequately on his own.
We've wondered for a week or so now whether James' movements are truly purposeful or whether they are just reflexive. The answer to that would make a huge difference in the decision on which road to go down next. But this morning, with the BiPAP mask on (by the way, James has ALWAYS hated any sort of mask covering his face), James started fussing and we went to talk to him and reassure him and we noticed that James was actually crying...clearly not happy about the mask. Seems terrible to be excited about crying, but crying is clearly not reflexive.
Over the years of dealing with James' brain tumor, we have known many families who dealt with end-of-life issues, some with an amazing grace from God. I often thought I could never do that. But over the last month I have begun to understand why they chose what they did. There comes a point where it ceases to be about how much you will miss your child and it starts to become how much you are willing to let them suffer. As we've watched James storm over the last 3 weeks, we realized that we don't want him to have to do that forever. Although our hearts would hurt more than we could ever know, we don't want him to survive only to be in much pain or to endure surgery after surgery. So it is our prayer that God will make James well (not perfect, but not suffering) or take him Home.
Having said that, we are encouraged by how James is doing. God hasn't taken James Home yet and we have to believe that there is a reason. James continues to amaze the doctors. Now that he has the breathing tube out, the next step is to help James wake up and assess where we think he is. That is the fork in the road that will determine whether we move forward with treating the tumor or not. We are praying for God's wisdom.
Sunday, October 31, 2010
Tuesday, October 26, 2010
Loving James' Pet
Coco is James' sweet dog that he's had for a couple years, since a puppy. Jonathan found an easier way for people to help with James' pets. On the website (jamesneubauer.com) there is a donate button that can accommodate paypal or credit cards. This will go directly into the James Neubauer Medical Fund Paypal and then can be used to pay the kennel bill. We've printed some bones and paw prints that we will put the names of those that have loved James' pets for him and hang them all on his wall. We'll post a picture when we get them up.
James and Coco in 2007
James and Coco in 2007
Sunday, October 17, 2010
Praying
James has a lot of doctors (very good doctors) on board who are all working very hard to help him get well. But we know that James' greatest help will come from the Lord. So I wanted to update and keep everyone praying James through these next few days.
First, there is a new PICU attending doctor on for the weekend and she is very aggressive in trying to move James forward and closer to getting the ventilator removed. I like that....but at the same time I'm afraid. Her name is Dr. Ozment and I'm praying that she will have God's wisdom this weekend.
Dr. Ozment's first job this weekend has been to get James switched from narcotic medications for controlling his storms to other medications that will not suppress his breathing. If they can do this without him storming too much, then he will be one step closer to getting the breathing tube out. Yesterday, they weaned one of the medications to almost nothing and James did well. I walked in on a storm this morning, but evidently it was the first one so far. Today will be another day of weaning the narcotics, with the hope of being switched by sometime tomorrow. Pray for wisdom as they make this switch and subsequently control the storming episodes.
James chest x-ray looked better last night, but then worse again this morning. They are going to be more aggressive in trying to get those lungs cleared up today. Again, praying for wisdom and safety.
Due to the steroids that James is on, he has high blood sugar now. They will start insulin to keep it under control.
Finally, James' shunts are still not working right. It is routine when the shunts are draining outside the head that they change the tubing and catheters weekly, to avoid infection. It is the plan, I believe, to take James back to the operating room tomorrow to change those catheters and hopefully find a better placement. Of course, I worry about every surgery that James will need and I'm not sure how this will affect the efforts to get him off the breathing tube.
As you can see, each problem is so intricately intertwined with the next. In fixing one thing another will go wrong and to fix that one messes up something else. GOD knows what James needs....He knows how to untangle the mess....and He knows what is best for James. We are praying hard for His will to be done and for Him to be near to James. Thank you for praying with us!!!
First, there is a new PICU attending doctor on for the weekend and she is very aggressive in trying to move James forward and closer to getting the ventilator removed. I like that....but at the same time I'm afraid. Her name is Dr. Ozment and I'm praying that she will have God's wisdom this weekend.
Dr. Ozment's first job this weekend has been to get James switched from narcotic medications for controlling his storms to other medications that will not suppress his breathing. If they can do this without him storming too much, then he will be one step closer to getting the breathing tube out. Yesterday, they weaned one of the medications to almost nothing and James did well. I walked in on a storm this morning, but evidently it was the first one so far. Today will be another day of weaning the narcotics, with the hope of being switched by sometime tomorrow. Pray for wisdom as they make this switch and subsequently control the storming episodes.
James chest x-ray looked better last night, but then worse again this morning. They are going to be more aggressive in trying to get those lungs cleared up today. Again, praying for wisdom and safety.
Due to the steroids that James is on, he has high blood sugar now. They will start insulin to keep it under control.
Finally, James' shunts are still not working right. It is routine when the shunts are draining outside the head that they change the tubing and catheters weekly, to avoid infection. It is the plan, I believe, to take James back to the operating room tomorrow to change those catheters and hopefully find a better placement. Of course, I worry about every surgery that James will need and I'm not sure how this will affect the efforts to get him off the breathing tube.
As you can see, each problem is so intricately intertwined with the next. In fixing one thing another will go wrong and to fix that one messes up something else. GOD knows what James needs....He knows how to untangle the mess....and He knows what is best for James. We are praying hard for His will to be done and for Him to be near to James. Thank you for praying with us!!!
Saturday, October 16, 2010
A new chapter
Our life lately is like that chapter you reach in a book when everything changes and you say, "No way!!! I never expected that!!
Two weeks ago, James was once again airlifted to Duke for a shunt revision. We were not surprised when he did not wake right away from the surgery as that had been his pattern for all the shunt revisions he's had this last summer. In fact, it actually seemed like he was waking a little better than the last revision. But the new turn came when he started having what is called "autonomic storming" or "hypothalamic storming."
If I understand it right, this storming is caused when the hypothalamus (which is the area of the brain that James' tumor is in) becomes damaged. This is the area of the brain that controls our hormones. With this damage, James' hypothalamus is dumping large amounts of adrenaline into his system. So these storms, although somewhat similar looking to a seizure, are actually huge adrenaline rushes. With each storming episode, James' blood pressure shoots up very high, his heart rate triples, he hyperventilates, and his muscles tense so hard that they could actually tear. They seem to be triggered by stimulation or agitation. Autonomic storming is not a common thing and so there is not a lot known about it or how to best treat it. It's still trial and error.
In an effort to rule out seizures as the cause, James underwent an EEG last week. Due to the stimulation, James ended up storming for the entire procedure - 45 minutes long. That was more than his body could handle and he ended up "crashing," with his blood pressure dropping quickly. He was coded and eventually needed intubated to protect his airway. The doctors were not sure that James, at that time, would even survive an intubation and asked us to tell him good-bye. Talk about catching me off guard!!!!! Although I've always known that I might have to do that someday, I never suspected it would be now. My heart was broken!!!!!!!
James pulled through that night and continues to fight. It has been a challenge over the last week to try to get him off the breathing tube (to clarify, he breathes on his own, but needs the help to expand the lungs enough to keep them healthy) and still control the storms at the same time.
To add to the mix, one of James' blood cultures from several days ago started growing something, so he now is being treated with 3 antibiotics. Let's see.......we have a PICU doctor, neurosurgeon, neurologist, endocrinologist, infectious disease doctor, and radiation oncologist. That is a lot of cooks in the kitchen!!! It was decided that a meeting was needed with everyone involved in James' care, in order to make sure that everyone knew what the other was doing and that everyone had the same goal in mind for James.
Yesterday was that meeting and I feel that it went very well. It started with an opportunity for me to tell everyone who James really is and what he means to us. I shared how friendly and how smilely James is....but more than anything, I shared how brave he is and that several months ago we (his family) promised him that we would fight with him no matter what. I wanted them to know that we intend to keep that promise to James. Fighting didn't mean that we were just going to let James have these storms forever, but it meant that we weren't calling it quits until James indicated that he was ready to call it quits. I don't know how he will do that, but I don't think it is now.
The thing that makes James' care so complicated is that each problem is intertwined with other problems. There's no way to just say, "Step 1, Step 2, Step 3......" We laid out a plan and expectations, but not a one of them will be easy. The plan for the weekend is to adjust his sedation medications to the point that he could be safely extubated. His chest x-ray showed that his lungs are a little sicker today than yesterday and that needs to improve before extubating also. At the same time, neurosurgery is working to get the ventricle (the right in particular) to decrease in size, as it has still been enlarged since the last surgery. The right catheter was adjusted yesterday and the drainage seems much better, so they are doing a CT scan today to see if the ventricle is coming down. It's possible that the decrease of this ventricle will help the storming episodes, since the increase in the ventricles always made it worse.
We're asking everyone to pray for wisdom for us and the doctors, for strength for James, and for God's will to be done. We are so encouraged by the love and prayers of everyone. I put the cards that have been sent to James all over his room.
The view from James' pillow.....can't wait til he wakes up and sees how much he is loved.
Two weeks ago, James was once again airlifted to Duke for a shunt revision. We were not surprised when he did not wake right away from the surgery as that had been his pattern for all the shunt revisions he's had this last summer. In fact, it actually seemed like he was waking a little better than the last revision. But the new turn came when he started having what is called "autonomic storming" or "hypothalamic storming."
If I understand it right, this storming is caused when the hypothalamus (which is the area of the brain that James' tumor is in) becomes damaged. This is the area of the brain that controls our hormones. With this damage, James' hypothalamus is dumping large amounts of adrenaline into his system. So these storms, although somewhat similar looking to a seizure, are actually huge adrenaline rushes. With each storming episode, James' blood pressure shoots up very high, his heart rate triples, he hyperventilates, and his muscles tense so hard that they could actually tear. They seem to be triggered by stimulation or agitation. Autonomic storming is not a common thing and so there is not a lot known about it or how to best treat it. It's still trial and error.
In an effort to rule out seizures as the cause, James underwent an EEG last week. Due to the stimulation, James ended up storming for the entire procedure - 45 minutes long. That was more than his body could handle and he ended up "crashing," with his blood pressure dropping quickly. He was coded and eventually needed intubated to protect his airway. The doctors were not sure that James, at that time, would even survive an intubation and asked us to tell him good-bye. Talk about catching me off guard!!!!! Although I've always known that I might have to do that someday, I never suspected it would be now. My heart was broken!!!!!!!
James pulled through that night and continues to fight. It has been a challenge over the last week to try to get him off the breathing tube (to clarify, he breathes on his own, but needs the help to expand the lungs enough to keep them healthy) and still control the storms at the same time.
To add to the mix, one of James' blood cultures from several days ago started growing something, so he now is being treated with 3 antibiotics. Let's see.......we have a PICU doctor, neurosurgeon, neurologist, endocrinologist, infectious disease doctor, and radiation oncologist. That is a lot of cooks in the kitchen!!! It was decided that a meeting was needed with everyone involved in James' care, in order to make sure that everyone knew what the other was doing and that everyone had the same goal in mind for James.
Yesterday was that meeting and I feel that it went very well. It started with an opportunity for me to tell everyone who James really is and what he means to us. I shared how friendly and how smilely James is....but more than anything, I shared how brave he is and that several months ago we (his family) promised him that we would fight with him no matter what. I wanted them to know that we intend to keep that promise to James. Fighting didn't mean that we were just going to let James have these storms forever, but it meant that we weren't calling it quits until James indicated that he was ready to call it quits. I don't know how he will do that, but I don't think it is now.
The thing that makes James' care so complicated is that each problem is intertwined with other problems. There's no way to just say, "Step 1, Step 2, Step 3......" We laid out a plan and expectations, but not a one of them will be easy. The plan for the weekend is to adjust his sedation medications to the point that he could be safely extubated. His chest x-ray showed that his lungs are a little sicker today than yesterday and that needs to improve before extubating also. At the same time, neurosurgery is working to get the ventricle (the right in particular) to decrease in size, as it has still been enlarged since the last surgery. The right catheter was adjusted yesterday and the drainage seems much better, so they are doing a CT scan today to see if the ventricle is coming down. It's possible that the decrease of this ventricle will help the storming episodes, since the increase in the ventricles always made it worse.
We're asking everyone to pray for wisdom for us and the doctors, for strength for James, and for God's will to be done. We are so encouraged by the love and prayers of everyone. I put the cards that have been sent to James all over his room.
The view from James' pillow.....can't wait til he wakes up and sees how much he is loved.
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