Derek took this photo
Mom and her boys
Mother and daughter
Dad holding KatelynThe hardest part about taking so long to update is that it is difficult to report on what has happened over a long period of time. It is much easier when I have posted recently.
I will start with Katelyn. She’s had every test they can come up with to try and figure out what caused the seizures but they still haven’t found anything. While it is very good that they haven’t found a big problem it is still very alarming that they don’t know why. The good news is that it hasn’t happened again. I also wrote about a strange twitching incident in a previous post. It seems like this was nothing. It began to happen again as I held her a couple of nights later. The doctor at that time didn’t think it was a problem and when I woke her up (she wasn’t sedated) it seemed to stop. This made everyone pretty confident that the twitching was just due to an immature nervous system and wasn’t a seizure of any kind. I’m sure I will be alarmed at anything strange for the next year or more.
One of the changes that happened around the time of Katelyn’s first seizure was that she had diarrhea. She’s been tested for a bunch of infections and problems that might have caused this (and possibly the seizure). A couple of days ago a new nurse practitioner had another idea. She had Katelyn tested for something else. They found that she had a virus called “C. Diff”. The way I understand it is that this virus is really common in newborns (and adults) but that these babies usually don’t have the receptors. This means that typically it doesn’t matter if they “have” this virus. The doctors and nurses seem to agree about this. Some say that there is no way she is old enough to have this effect her and others are sure that it could be a problem. However if she did, they all seem to agree that this could put her in a state where she would be more susceptible to seizures. In any case they are giving her a seven-day course of medication to treat it. She seems to be more happy and acting as if she is feeling better.
The interesting thing is that C. Diff is very contagious. Because of this they put Katelyn in isolation. What this really means is that everyone has to wear a gown and gloves when they are around Katelyn. Most likely once she has tested negative we won’t have to put on the gloves every time we visit.
Another interesting note is that one of the nurses did some research. The one change in Katelyn’s medication on the day of her first seizure was that they gave her Gaviscon to treat her upset stomach. The nurse discovered that in very rare cases it has caused seizures in infants. Who knows? Maybe it was the combination of C. diff and the new medication. It may not be verifiable but at least we have a possibility.
The question now is what to do with her seizure medication. It isn’t good to keep her on the medication for a long period of time so they don’t want to give it to her needlessly. However, if it is preventing seizures it wouldn’t be wise to discontinue it. The doctors decided to discontinue this medication and watch her very closely.
Along with acting older and older all of the time, Katelyn is getting kind of chunky. She still is small when compared to most newborns but she is filling out well. She has a lot of personality and she is nursing well now.
Brandon was doing well for a long time but in the last couple of days he began to worry us. His oxygen needs have been fluctuating quite a bit. He also hasn’t been nursing well. They have been testing him for various infections and viruses because this is often and indication that he is sick. This morning he had a particularly bad incident where he basically stopped breathing for a while. He returned to normal after a couple of minutes. Luckily this happened as the doctors where “rounding” on him so they were able to observe how poorly he was doing.
He has been doing a lot better since then. It could be a result of several things. They replaced the tubing around his nose, they gave him a dose of caffeine (because they recently took him off of a similar drug that helped increase his respiratory drive) an his Mom and Dad did a lot of praying. He has been much more stable the rest of the night.
They did more tests including a Lumbar puncture. Guess what they found….. C. diff. One interesting note is that they tested him for this about a week ago and they didn’t find anything. They are going to begin treatment and see what happens.
I will start with Katelyn. She’s had every test they can come up with to try and figure out what caused the seizures but they still haven’t found anything. While it is very good that they haven’t found a big problem it is still very alarming that they don’t know why. The good news is that it hasn’t happened again. I also wrote about a strange twitching incident in a previous post. It seems like this was nothing. It began to happen again as I held her a couple of nights later. The doctor at that time didn’t think it was a problem and when I woke her up (she wasn’t sedated) it seemed to stop. This made everyone pretty confident that the twitching was just due to an immature nervous system and wasn’t a seizure of any kind. I’m sure I will be alarmed at anything strange for the next year or more.
One of the changes that happened around the time of Katelyn’s first seizure was that she had diarrhea. She’s been tested for a bunch of infections and problems that might have caused this (and possibly the seizure). A couple of days ago a new nurse practitioner had another idea. She had Katelyn tested for something else. They found that she had a virus called “C. Diff”. The way I understand it is that this virus is really common in newborns (and adults) but that these babies usually don’t have the receptors. This means that typically it doesn’t matter if they “have” this virus. The doctors and nurses seem to agree about this. Some say that there is no way she is old enough to have this effect her and others are sure that it could be a problem. However if she did, they all seem to agree that this could put her in a state where she would be more susceptible to seizures. In any case they are giving her a seven-day course of medication to treat it. She seems to be more happy and acting as if she is feeling better.
The interesting thing is that C. Diff is very contagious. Because of this they put Katelyn in isolation. What this really means is that everyone has to wear a gown and gloves when they are around Katelyn. Most likely once she has tested negative we won’t have to put on the gloves every time we visit.
Another interesting note is that one of the nurses did some research. The one change in Katelyn’s medication on the day of her first seizure was that they gave her Gaviscon to treat her upset stomach. The nurse discovered that in very rare cases it has caused seizures in infants. Who knows? Maybe it was the combination of C. diff and the new medication. It may not be verifiable but at least we have a possibility.
The question now is what to do with her seizure medication. It isn’t good to keep her on the medication for a long period of time so they don’t want to give it to her needlessly. However, if it is preventing seizures it wouldn’t be wise to discontinue it. The doctors decided to discontinue this medication and watch her very closely.
Along with acting older and older all of the time, Katelyn is getting kind of chunky. She still is small when compared to most newborns but she is filling out well. She has a lot of personality and she is nursing well now.
Brandon was doing well for a long time but in the last couple of days he began to worry us. His oxygen needs have been fluctuating quite a bit. He also hasn’t been nursing well. They have been testing him for various infections and viruses because this is often and indication that he is sick. This morning he had a particularly bad incident where he basically stopped breathing for a while. He returned to normal after a couple of minutes. Luckily this happened as the doctors where “rounding” on him so they were able to observe how poorly he was doing.
He has been doing a lot better since then. It could be a result of several things. They replaced the tubing around his nose, they gave him a dose of caffeine (because they recently took him off of a similar drug that helped increase his respiratory drive) an his Mom and Dad did a lot of praying. He has been much more stable the rest of the night.
They did more tests including a Lumbar puncture. Guess what they found….. C. diff. One interesting note is that they tested him for this about a week ago and they didn’t find anything. They are going to begin treatment and see what happens.
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