Much better than last year, don't you think?
Tuesday, October 30, 2007
Friday, October 26, 2007
We are still here
at the hospital doing the VEEG. Here is the story...
When we first got here on Wed. the nurse practitioner told us that from the videos I took at home as well as my descriptions and their knowledge of low tone CP kids, they felt that there was a chance that the retching episodes were actually seizures. If it turned out that they were seizures it would also explain why no meds are helping and they might be better controlled with different seizure meds. I spoke with the doctor later that day and she said that it appeared that he was having seizures, but she did not have much info since we had only been there for a few hours.
Yesterday, I spoke again with the doctor. Bad news. He is definitely having seizure activity, however there is no correlation with the retching episodes. He had a lot (over 40) of electrographic seizures that could not be seen clinically...meaning they can been seen on the EEG, but there are no signs when you look at him that he is having a seizure. They were very short episodes though, most around 5 seconds or less.
The plan was to keep him here for another night just to be sure they were seeing all of his typical behavior and then decide if they were going to do anything to his meds or not. The doctors meet at 11 and then start rounds so we may not know anything for a couple hours yet.
Hopefully we will be discharged sooner than later since I am dreaming of beating the traffic going home. Doesn't look like that is going to happen, it will likely be a long trip home both because of the traffic and because the weather is not all that good today.
On the positive side...we have out own room and it is a decent size. It has a bathroom with a shower. And wireless internet!!!!! Definitely nicer than Children's Memorial in that respect. However, the cafeteria is not as good as CMH by far (which surprises me since I never though theirs was good at all!) and I know where the free coffee is over there. I would do some exploring here, but you can't leave the kids alone in the EMU so if I go anywhere I have to call the nurse to stay with him.
When we first got here on Wed. the nurse practitioner told us that from the videos I took at home as well as my descriptions and their knowledge of low tone CP kids, they felt that there was a chance that the retching episodes were actually seizures. If it turned out that they were seizures it would also explain why no meds are helping and they might be better controlled with different seizure meds. I spoke with the doctor later that day and she said that it appeared that he was having seizures, but she did not have much info since we had only been there for a few hours.
Yesterday, I spoke again with the doctor. Bad news. He is definitely having seizure activity, however there is no correlation with the retching episodes. He had a lot (over 40) of electrographic seizures that could not be seen clinically...meaning they can been seen on the EEG, but there are no signs when you look at him that he is having a seizure. They were very short episodes though, most around 5 seconds or less.
The plan was to keep him here for another night just to be sure they were seeing all of his typical behavior and then decide if they were going to do anything to his meds or not. The doctors meet at 11 and then start rounds so we may not know anything for a couple hours yet.
Hopefully we will be discharged sooner than later since I am dreaming of beating the traffic going home. Doesn't look like that is going to happen, it will likely be a long trip home both because of the traffic and because the weather is not all that good today.
On the positive side...we have out own room and it is a decent size. It has a bathroom with a shower. And wireless internet!!!!! Definitely nicer than Children's Memorial in that respect. However, the cafeteria is not as good as CMH by far (which surprises me since I never though theirs was good at all!) and I know where the free coffee is over there. I would do some exploring here, but you can't leave the kids alone in the EMU so if I go anywhere I have to call the nurse to stay with him.
Monday, October 22, 2007
Coming up this week
This is the week Jackson is having his Video EEG (long term seizure monitoring). Jackson will be inpatient for at least 24 hours but possibly as long as 48 hours. We will be in Milwaukee for this so sadly Daddy can't come visit us while we we be there. If you want to check out where we will be staying click here, click on Special Areas of Interest Tour, and then click on the first little picture at the bottom of the pop-up screen. It will give you a 3-D tour of the unit, you can click on different hotspots in the tour for info.
We are also hoping to arrange to have Jackson's botox (for saliva control) done while we are there. Unfortunately, the office of the doctor who is supposed to do this does not seem very organized. I have been calling there trying to get this set up for a couple weeks now and have not heard yet if they can do it. Annoying! Today I was told the nurse who is supposed to be doing the call backs for the doctor was A) Very backed up with calls so she was already behind and B) Had a death in her family so she has not been in the office as much as usual. The administrative assistant I spoke with today said she would put the message in as "urgent". We'll see.
We are also hoping to arrange to have Jackson's botox (for saliva control) done while we are there. Unfortunately, the office of the doctor who is supposed to do this does not seem very organized. I have been calling there trying to get this set up for a couple weeks now and have not heard yet if they can do it. Annoying! Today I was told the nurse who is supposed to be doing the call backs for the doctor was A) Very backed up with calls so she was already behind and B) Had a death in her family so she has not been in the office as much as usual. The administrative assistant I spoke with today said she would put the message in as "urgent". We'll see.
Sunday, October 7, 2007
Thursday, October 4, 2007
Jackson's appointment at Shriner's
On Monday, Jackson had his long awaited orthopedic appointment at Shriner's Hospital. We wanted to go primarily for them to check out his hips and shoulders. It was a good appointment. He was seen by a team of people: social worker who functions as a care coordinator, nurse, PT, OT, and resident and attending orthopedic surgeons.
He got x-rays of his hips and his spine. He had to sit upright on a bench to get the spine x-ray, which was very difficult for him and for me (as I had to support him there).
As I suspected, there were problems with his hips. He has hip dysplasia, as shown on the x-rays. We knew there were issues with his hips because of his increasing "froggy" positions of his legs. However, I was told by the doctor that it is actually good for his hips to be in that froggy position, that it actually keeps his hip where they are supposed to be. At this time they are not going to do anything for his hips aside from keeping an eye on them. This is very common in children with CP.
A surprise to me though, was that he has scoliosis. They said it was a curve of 20%, his x-ray looked quite curvy to me. This is also a very common condition in children with CP. I guess it should not have been that much of a surprise because he always looks to the left and has different muscle tone on the left and right sides of his body. This is again something they are going to watch, but not treat at this time.
The recommendation is for him to get x-rays annually until the age of 9 or 10, and then every 6 months. He goes back in 6 months for another appointment.
The very cool thing is that Shriner's is only about a 10 minute drive from our house. If you know Chicago, you know that you really can't get anywhere in 10 minutes. They also provide totally free care.
He got x-rays of his hips and his spine. He had to sit upright on a bench to get the spine x-ray, which was very difficult for him and for me (as I had to support him there).
As I suspected, there were problems with his hips. He has hip dysplasia, as shown on the x-rays. We knew there were issues with his hips because of his increasing "froggy" positions of his legs. However, I was told by the doctor that it is actually good for his hips to be in that froggy position, that it actually keeps his hip where they are supposed to be. At this time they are not going to do anything for his hips aside from keeping an eye on them. This is very common in children with CP.
A surprise to me though, was that he has scoliosis. They said it was a curve of 20%, his x-ray looked quite curvy to me. This is also a very common condition in children with CP. I guess it should not have been that much of a surprise because he always looks to the left and has different muscle tone on the left and right sides of his body. This is again something they are going to watch, but not treat at this time.
The recommendation is for him to get x-rays annually until the age of 9 or 10, and then every 6 months. He goes back in 6 months for another appointment.
The very cool thing is that Shriner's is only about a 10 minute drive from our house. If you know Chicago, you know that you really can't get anywhere in 10 minutes. They also provide totally free care.
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