We went and saw the hematologists today. We were there for awhile, not a long time with the doctors, it just took awhile.
No shots at the moment. He may be neutropenic, but he isn't having any issues of diseases, so there isn't a lot of concern at this moment.
Next appointment with them on May 11th.
Friday, February 24, 2012
Saturday, February 18, 2012
Posting
I haven't gotten a chance to fill in the posts from Facebook. I'm trying to make a good effort in writing in this as I think it will be infinitely more helpful than Facebook in keeping track of all the nuanced stuff. Facebook is just not the forum for all of it. It isn't that I think my family would care if I post a bunch of detailed stuff, I just don't think that they'd care. It's silly. I have two days off and only Tuesday class this week so I'm going to make it my goal to get that done. :)
Off to work!
Off to work!
Friday, February 17, 2012
30 calorie formula
Dean is now on 30 calorie formula. Just got off the phone with the nutritionist. Have to mix 1cup, 2Tbps, 2tsp of formula (enfamil) with 2 1/2 tsp of vegetable oil (yea, that's right...crazy!) then fill to make 24ozs.....
Wednesday, February 15, 2012
February 15, 2012
Today we finally met with the metabolism doctors. Dean had two appointments today, one with metabolism and with the heart failure doctors. We had originally had an appointment with metabolism at the beginning of the month, but then Dean was seen inpatient and they didn't see the need to have us come back the day after Dean was discharged to see them, so they moved the appointment back.
The genetics tests for me came back and I am a carrier. I'm unbelievably torn about this. I know that it isn't my fault, but I still feel like it is. So, I just am trying to not think about it. Will have to get the girls tested.
Metabolism has set up an appointment with the genetic counselors so that this can be explained better and we can have all our questions answered.
Dean's weight today didn't follow the chart curve. If it continues along thus new path he will go further and further away from the normal curve. I think the NP said that he was in the .95 percentile for weight. They expect him to be small, or it won't be a surprise if he is, it seems as if many kids with Barth's are small. I told them that my big concern right now is when he transitions from formula to food. The NP seemed to understand my worries and said that they have a metabolism nutritionist but that she is a metabolism one not a cardiology one and wanted me to talk to the cardiologist about the issue first. We also talked about fortifying his formula (he's on a special 26 calorie recipe of enfamil right now) to bring up the calories because he has been sleeping through the night the last few nights so he's 1) not eating enough at a feeding and 2) missing a feeding now that he's sleeping through the night.
But, on the positive side, he is doing well developmentally, so I'll take that!
I went to the cardiologist and we talked about the nutrition and he didn't seem to think that there was a gigantic issue with the transition from formula to food, that most of his calories will be coming from formula until a year so that wasn't a huge deal. Also, he said that he would talk to the nutritionist that they talk to and let me know if they think that fortifying the formula would be for the best.
Then we talked about the genetics testing and he gave me what he things. The metabolism doctor said that he would wait until the girls turn 18, and he didn't think that they needed to be told anything, but cardiology said that he thought the sooner the better because if the girls aren't carriers then there wont need to be a discussion. I plan on talking to the geneticist then getting them tested for it.
We did our usual blood work and we went home.
After I got home, the NP called me and said that he blood work had come back and that Dean's thyroid is fine (there was a blip on the newborn screening about it) and that his neutrophil counts were low.
As I understand it, neutrophil are most common white blood cell (which fight off infections). Normal would be around 1,000. Concern would be if his was 500. His is actually at 50. That's right, FIFTY. So, he is at an extreme disadvantage if he gets sick. Because of this, we now have an appointment next week with hematology! :( they aren't TOO worried because he was so well in clinic, but they are worried.
It was a long day.
The genetics tests for me came back and I am a carrier. I'm unbelievably torn about this. I know that it isn't my fault, but I still feel like it is. So, I just am trying to not think about it. Will have to get the girls tested.
Metabolism has set up an appointment with the genetic counselors so that this can be explained better and we can have all our questions answered.
Dean's weight today didn't follow the chart curve. If it continues along thus new path he will go further and further away from the normal curve. I think the NP said that he was in the .95 percentile for weight. They expect him to be small, or it won't be a surprise if he is, it seems as if many kids with Barth's are small. I told them that my big concern right now is when he transitions from formula to food. The NP seemed to understand my worries and said that they have a metabolism nutritionist but that she is a metabolism one not a cardiology one and wanted me to talk to the cardiologist about the issue first. We also talked about fortifying his formula (he's on a special 26 calorie recipe of enfamil right now) to bring up the calories because he has been sleeping through the night the last few nights so he's 1) not eating enough at a feeding and 2) missing a feeding now that he's sleeping through the night.
But, on the positive side, he is doing well developmentally, so I'll take that!
I went to the cardiologist and we talked about the nutrition and he didn't seem to think that there was a gigantic issue with the transition from formula to food, that most of his calories will be coming from formula until a year so that wasn't a huge deal. Also, he said that he would talk to the nutritionist that they talk to and let me know if they think that fortifying the formula would be for the best.
Then we talked about the genetics testing and he gave me what he things. The metabolism doctor said that he would wait until the girls turn 18, and he didn't think that they needed to be told anything, but cardiology said that he thought the sooner the better because if the girls aren't carriers then there wont need to be a discussion. I plan on talking to the geneticist then getting them tested for it.
We did our usual blood work and we went home.
After I got home, the NP called me and said that he blood work had come back and that Dean's thyroid is fine (there was a blip on the newborn screening about it) and that his neutrophil counts were low.
As I understand it, neutrophil are most common white blood cell (which fight off infections). Normal would be around 1,000. Concern would be if his was 500. His is actually at 50. That's right, FIFTY. So, he is at an extreme disadvantage if he gets sick. Because of this, we now have an appointment next week with hematology! :( they aren't TOO worried because he was so well in clinic, but they are worried.
It was a long day.
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