More than one of you have mentioned to me that I have not updated this blog in quite a while. In this case, no news is good news. Thanks to your prayers, James has come a long way back from his nadir in August. Many things are back to normal: he is living at his own place with caregivers, he's about to start a day program again; and he is eating like there is no tomorrow! In connection with his new "school" application, Mary took James to the doctor, and he topped the scale with an all-time record: 143 pounds. We knew that his arms and legs and face were fuller, that he was eating well, that he was quite a bit stronger, that he even had a little tiny bit of tummy; but 143 pounds? Before all this began, his maximum was 125. In fact, the doctor is doing some tests to determine whether he is retaining fluid for some reason. His ankles look a little puffy from time to time.
Another change: on Monday, James and Mom went to Taco Bell, and James asked for one order of regular nachos, not four bean burritos with no onions. One of his new favorites (enjoyed before, but eaten much more often now) is a "breakfast sandwich" from Jack-in-the-Box. In case you need a recommendation, it is whichever one has the most meat on it. Also, I have now been to Chili's twice with James when he did not order "beef and chicken fuh-heetas with no sour cream, double glockamoly". He likes the little cheeseburgers (and so do I).
Physically, James is much stronger, but he is not walking like he used to. When he gets up, he can walk under his own steam with just a steadying hand/safety net. We are hoping and praying that this gets better; I think it will. James has big plans for his birthday on July 7 (23).
James's parents are much better. We got to go to Cabo San Lucas for a week, and James did not have a single seizure while we were gone. (He did call us from his cell phone a few times; can't wait to see the roaming bill.) Again, thank you for prayers, and I will try to update again soon. B
Tuesday, July 1, 2008
Tuesday, January 8, 2008
1/8/08 - a new day
After his three weeks of rehab, James was doing much, much better. Since then he has been eating a pureed diet and getting liquid feedings through his tube at night. He is very close to being back to what we consider his "baseline" - gained back weight, looking more muscled and less skeletal, putting together jigsaw puzzles, laughing and talking, calling people on his cell phones. I am grateful to God and all of you who have prayed so hard for him.
Last Friday, we had a minor setback, but the end result was an improvement. James's G-tube was leaking, and there was some blood in the area. Mary took him to the ER, where they replaced it with a much better tube - better anchored in the stomach and on his chest, clear instead of opaque, snap-on lid that will take longer to wear out. (Gross? Well, ...)
James has only had a few seizure episodes, and they were stopped without any hospitalization. One hospital day for 2008 (ER), 180 for 2007.
I am starting not to be mad at God. I know that I may never know why all of this happened, but I am choosing to look ahead and look forward to more time with my little love bucket. I determined a long time ago that all James had to do was love his dad, and he has done that magnificently.
Thanks again to all of you. B
Last Friday, we had a minor setback, but the end result was an improvement. James's G-tube was leaking, and there was some blood in the area. Mary took him to the ER, where they replaced it with a much better tube - better anchored in the stomach and on his chest, clear instead of opaque, snap-on lid that will take longer to wear out. (Gross? Well, ...)
James has only had a few seizure episodes, and they were stopped without any hospitalization. One hospital day for 2008 (ER), 180 for 2007.
I am starting not to be mad at God. I know that I may never know why all of this happened, but I am choosing to look ahead and look forward to more time with my little love bucket. I determined a long time ago that all James had to do was love his dad, and he has done that magnificently.
Thanks again to all of you. B
Friday, December 7, 2007
12/7/07 - a month later ...
I am shocked to see that it has been so long since I updated this page. On the Monday before Thanksgiving, we took James to the hospital because he was having seizures AND vomiting. Mary and he spent 48 hours in the emergency room - half the emergency department was being remodeled because of a broken water pipe, besides they don't have any spare staff at any time -then he was taken by ambulance to a hospital in San Ramon, about half the distance to our house and not a part of our HMO. There James continued to seize and vomit and slowly get better for two weeks. Last Saturday (December 1) he went to a rehab center about 13 miles from our house.
James has been having physical therapy and getting stronger. He also has been eating double meals and getting tube feedings at night. Today he had one generalized seizure that was stopped with Ativan. He is limp, but was pretty chipper on the phone. I'll go to see him tonight.
Mary has been forced to limit her time at the facility, since they don't allow people to camp out in the room. I think this has been good for her and for James - once, when neither of us was there to feed him dinner, James volunteered to feed himself, which just goes to show he can do more for himself if he has the opportunity.
I don't know how long he'll be where he is, but I think he is on an upper trajectory now. That alone is reason for thanks. Keep praying, and pray for his parents, who are exhausted and on edge. I am particularly pathetic. Love to all, B
James has been having physical therapy and getting stronger. He also has been eating double meals and getting tube feedings at night. Today he had one generalized seizure that was stopped with Ativan. He is limp, but was pretty chipper on the phone. I'll go to see him tonight.
Mary has been forced to limit her time at the facility, since they don't allow people to camp out in the room. I think this has been good for her and for James - once, when neither of us was there to feed him dinner, James volunteered to feed himself, which just goes to show he can do more for himself if he has the opportunity.
I don't know how long he'll be where he is, but I think he is on an upper trajectory now. That alone is reason for thanks. Keep praying, and pray for his parents, who are exhausted and on edge. I am particularly pathetic. Love to all, B
Saturday, November 17, 2007
11/07/07 - very bad day
James was dropped off mistakenly yesterday at our house (we had planned to take him on Sunday and keep him all week), but we had a very nice day with him. At about six this morning he started to have many, many generalized seizures. Mary ended up giving him 6 mg of Ativan in all, and the seizures stopped. He has been very doped up, feverish (could be the seizures or something else), and very slow to respond. About 5.00 pm, Mary was ready to take him to the ER, but I talked her into waiting a little longer and he got better. He is still very sluggish and has had a very bad day, but his fever is down, and I just heard him talking a little bit. (I was right i was right i was right i was rightiwasrightiwasrightiwas RIGHT. I'll say it to myself because I will not likely hear it from anyone else.)
Even more than usual I ask for your prayers. Mary and I are both exhausted and feel incapable of handling all of this. The sad thing is that no one is equipped to do any better. The ER would just monitor him; a medical-based group home would not take him because his condition is unstable; the staff at his house does pretty well, but not if he is having this much trouble. Has God produced or allowed an impossible situation? I think not, but it's looking that way at this moment.
We have been blessed by some dear friends and colleagues at Mary's school, who have provided some wonderful food for us. If you are one of those, this has been a star in your crown. Tonight I made quite a bit of food - I ate a lot, Mary ate some, Michael ate nothing. James got a can through his tube - all he can handle right now.
Off to bed. Love you all of you - keep praying. B
Even more than usual I ask for your prayers. Mary and I are both exhausted and feel incapable of handling all of this. The sad thing is that no one is equipped to do any better. The ER would just monitor him; a medical-based group home would not take him because his condition is unstable; the staff at his house does pretty well, but not if he is having this much trouble. Has God produced or allowed an impossible situation? I think not, but it's looking that way at this moment.
We have been blessed by some dear friends and colleagues at Mary's school, who have provided some wonderful food for us. If you are one of those, this has been a star in your crown. Tonight I made quite a bit of food - I ate a lot, Mary ate some, Michael ate nothing. James got a can through his tube - all he can handle right now.
Off to bed. Love you all of you - keep praying. B
Saturday, November 10, 2007
11/10/07 - not really worse, but ...
Not really better. It is a real balancing act to get all meds in him, along with anti-nausea stuff, and get him to hold down his food. Friday night was fine, but Saturday afternoon James lost his lunch. Mary is taking a leave of absence from school - she finally wore down to nothin' (like me). Pray that we will have the energy to do what we must.
Tuesday, October 23, 2007
10/23/07 - too long since last post
Since last I got around to this, James has come off the drug honeymoon it seems we were having. In eight days, he went to the emergency room and was admitted all three times for seizures. Yesterday (Monday), 3 days after getting home, he had to go in for vomiting, not seizures, although there were seizures because he was not holding down his meds.
We are trying injections of Ativan at home, since the oral Ativan has not been stopping anything. Last Friday that kept us from another trip back to the ER. This is pretty unusual, but NOTHING ELSE IS WORKING, and we cannot keep going to the ER for the rest of our lives. We might as well just move into the hospital.
It will not surprise you to know that James's parents are about circling the drain themselves. Mary is taking off a couple of weeks at least, and I am already only minimally functional. We have gotten Michael out of algebra because he has been getting farther and farther behind, and Dad is finally past the point of being able to sit with him the hours it would take to catch him up. We really don't have a fix on Michael's mental state, but it can't be ideal, since he is missing assignments and school regularly. I think we all need to curl up in our respective corners for a while, but James keeps having seizures and life otherwise keeps moving.
Please, please pray that James will be able to keep down his higher doses of meds and that they will work. Pray for the rest of us as well. We are out of fuel and there isn't a station nearby.
Hard to believe it is God's will for us all to collapse. B
We are trying injections of Ativan at home, since the oral Ativan has not been stopping anything. Last Friday that kept us from another trip back to the ER. This is pretty unusual, but NOTHING ELSE IS WORKING, and we cannot keep going to the ER for the rest of our lives. We might as well just move into the hospital.
It will not surprise you to know that James's parents are about circling the drain themselves. Mary is taking off a couple of weeks at least, and I am already only minimally functional. We have gotten Michael out of algebra because he has been getting farther and farther behind, and Dad is finally past the point of being able to sit with him the hours it would take to catch him up. We really don't have a fix on Michael's mental state, but it can't be ideal, since he is missing assignments and school regularly. I think we all need to curl up in our respective corners for a while, but James keeps having seizures and life otherwise keeps moving.
Please, please pray that James will be able to keep down his higher doses of meds and that they will work. Pray for the rest of us as well. We are out of fuel and there isn't a station nearby.
Hard to believe it is God's will for us all to collapse. B
Monday, September 24, 2007
9/24/07 - seems like a miracle
I have no doubt that these results are because of your prayers out there. James has been seizure-free since about Friday, which is better than he has done in months. He is a lot more aware of his surroundings and is awfully glad to be at his home.
About Tuesday of last week, still in the hospital, James told me he needed to go to the bathroom, and I provided an in-bed convenience for him. He has been using that "convenience" since then, and even wore underwear on Saturday!
I am anxious to fatten him up. The tube feedings were carefully designed to do this, but James's metabolism must be on overtime. We will work back into solid foods before too long. I have already cheated a little - bought him turkey and mashed potatoes in the hospital - and he did fine. I don't think he's ever really aspirated solid food, but thin liquids have been a problem before.
Tonight I called him and he was playing video games in his chair. He was very glad to be with Brandy, who takes such excellent care of him. We still have some things to work out, like delivery of his new formula and a feeding pump. I can't tell you what a relief it is to have him at his house and doing well. We hope to get the diagnostic stuff going before too long, but we don't want to wear him out. Thank you all, B
About Tuesday of last week, still in the hospital, James told me he needed to go to the bathroom, and I provided an in-bed convenience for him. He has been using that "convenience" since then, and even wore underwear on Saturday!
I am anxious to fatten him up. The tube feedings were carefully designed to do this, but James's metabolism must be on overtime. We will work back into solid foods before too long. I have already cheated a little - bought him turkey and mashed potatoes in the hospital - and he did fine. I don't think he's ever really aspirated solid food, but thin liquids have been a problem before.
Tonight I called him and he was playing video games in his chair. He was very glad to be with Brandy, who takes such excellent care of him. We still have some things to work out, like delivery of his new formula and a feeding pump. I can't tell you what a relief it is to have him at his house and doing well. We hope to get the diagnostic stuff going before too long, but we don't want to wear him out. Thank you all, B
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