We had our appointment today with the pulmonologist and the news is good.... I can't quite get into right now, but it's NOT Cystic Fibrosis or some horrible immunity disorder. Basically, Sweet Pea isn't getting the benefits of the PREVNAR vaccine, so she got what was called a 'pneumonia vaccine shot' today. We will go in 4 weeks to have more blood work to see if this vaccine is working properly. If not, a low dose of preventive antibiotics will be in order. So, YEAH, huge sigh of relief, right???
Now, for the bad news, I need to try to find a home care person for my baby girl. Just because of everything, I daycare setting would not be best right now.
More bad news....My computer is having issues and is in the 'shop' for probably 3 weeks. I have sooo much to blog about, ugh...but unfortunately, Daddy Dearest will only share his computer with me for little bits at a time. The good news, we bought the 'Accident Plan' when this computer was purchased, whew!
More news later!
Monday, July 20, 2009
Tuesday, July 14, 2009
Still No Call
....From the pulmonologist office, that is. I've known the results of the sweat chloride test for almost 36 hours. I wonder what they are waiting on? I don't suppose they can possibly understand the anxiety and stress these tests are putting in our lives...
I'm just sayin'....
I'm just sayin'....
Monday, July 13, 2009
One Down, One to Go...
Wow, it's been a stressful time around here...even though we aren't really talking about it, you can tell that Daddy Dearest and I are feeling stressed about the result's of Sweet Pea's tests. Last week, my new best friend at the lab told me I could call and get the results of the sweat chloride test via phone...not so, this is what happened....
Lab- yes the results are in, let's transfer you to medical records.....
Medical records- yes we have the results, we can fax you a release and mail them to you, you can wait for your doctor to let you know, or you can come down here and get them. No, we don't know if your doctor has the results....
Sooooooooooo, we load everyone up and haul our happy selves down there...I'm anxious to see when the call will come from the doctor's office.
I get the results and really it's just a report that says that SP's numbers are less than 10 and then there is a breakdown of what the numbers mean...
0-40 is normal
40-60 is indeterminate
>60 is abnormal
So, my medical inexperience would say that her numbers are normal, right? Now, I'm just holding out for the blood work.
Yesterday, I did something that might be classified as stupid. I went with a friend to see the movie My Sister's Keeper. I cried the entire time...what was I thinking? I know I needed to get out of the house, but going to a movie involving a terminally ill child when I am dealing with issues about my child's health was not so smart....horrible, horrible...ugh!
Anyways, I feel some sense of relief, but now I'm sure I'll start to worry more about the blood work... I'm still trying to turn it all over to God and trust that this is in His hands, but still struggling. I just want to have faith and believe this will all end well....
Lab- yes the results are in, let's transfer you to medical records.....
Medical records- yes we have the results, we can fax you a release and mail them to you, you can wait for your doctor to let you know, or you can come down here and get them. No, we don't know if your doctor has the results....
Sooooooooooo, we load everyone up and haul our happy selves down there...I'm anxious to see when the call will come from the doctor's office.
I get the results and really it's just a report that says that SP's numbers are less than 10 and then there is a breakdown of what the numbers mean...
0-40 is normal
40-60 is indeterminate
>60 is abnormal
So, my medical inexperience would say that her numbers are normal, right? Now, I'm just holding out for the blood work.
Yesterday, I did something that might be classified as stupid. I went with a friend to see the movie My Sister's Keeper. I cried the entire time...what was I thinking? I know I needed to get out of the house, but going to a movie involving a terminally ill child when I am dealing with issues about my child's health was not so smart....horrible, horrible...ugh!
Anyways, I feel some sense of relief, but now I'm sure I'll start to worry more about the blood work... I'm still trying to turn it all over to God and trust that this is in His hands, but still struggling. I just want to have faith and believe this will all end well....
Thursday, July 9, 2009
Today!
We went Children's Medical Center for the Sodium Chloride Sweat Test today. The technician was very nice and Sweet Pea really did well! It took over an hour and she was calm and happy the entire time. I spent quite a bit of time talking with the technician about this test. This man is a doctor from India, however, before he can practice here, he has to become board certified. So, he works at the lab until all that happens.
The fact that neither myself or Daddy Dearest are carriers for Cystic Fibrosis means SP's chances of having this disease are very slim. Also, the fact that she does sweat is another good indicator that CF may be ruled out...
I am hopeful, but still concerned....and praying for resolution. I will update more when we have more information.
The fact that neither myself or Daddy Dearest are carriers for Cystic Fibrosis means SP's chances of having this disease are very slim. Also, the fact that she does sweat is another good indicator that CF may be ruled out...
I am hopeful, but still concerned....and praying for resolution. I will update more when we have more information.
Monday, July 6, 2009
Home, Sweet Home!
There's no place like home, that's for sure! We had an amazing week away. I love spending time with friends and family! I miss everyone so much, but it's really nice to get (almost) everyone home and sleeping in their own beds! Sweet Pea slept until 10 this morning, she was exhausted!Turkey Butt will be rejoining us on Saturday. He's spending a few days with his Nana. He was heading off into the wild this evening for some camping and fishing. It's a good thing Nana and Danny enjoy that, because this mommy and daddy do not!
I really appreciate all the thoughts and prayers from everyone. I'm not letting myself research all the craziness out there on the Internet so I can be more freaked out than I already am. I spent a LOT of time Monday night on the phone with one of my friends who truly keeps me grounded. Her faith is so unwavering and I truly aspire to be more like her... She reminded me that this was one doctor's opinion and that we are only in the initial stages of testing. She also helped me realize that the thoughts I was having about all the worst possible things that could happen weren't from God. I've really tried to put those out of my mind and give this all over to Him. I've been able to sleep most nights and I believe this is because I pray for the strength to get through each day. I did wake up early Sunday morning and my mind was racing with all the 'what ifs?'
We went this morning to have blood drawn to check for immunity disorders and all kinds of other things. I was on the verge of tears the entire time. I just kept telling myself to give it all to God, it is in His hands....again, I find myself struggling to do this. We'll go on Thursday for the sweat test. I've been reasoning back and forth trying to determine which would be worse? An immunity disorder or cystic fibrosis? Not an easy answer there. We should know the results of the sweat test early next week, the other results will take 1-2 weeks. Please keep praying for resolution to all of this!
I will post pictures soon! We had an awesome trip home. Got to spend a lot of time with some friends that we don't see nearly enough. There were also turtle races, pool time, slip and slide, and TONS of fireworks (that's the great thing about Small town, Texas)! Oh, and did I mention the food? Can't get back to the gym soon enough!
I really appreciate all the thoughts and prayers from everyone. I'm not letting myself research all the craziness out there on the Internet so I can be more freaked out than I already am. I spent a LOT of time Monday night on the phone with one of my friends who truly keeps me grounded. Her faith is so unwavering and I truly aspire to be more like her... She reminded me that this was one doctor's opinion and that we are only in the initial stages of testing. She also helped me realize that the thoughts I was having about all the worst possible things that could happen weren't from God. I've really tried to put those out of my mind and give this all over to Him. I've been able to sleep most nights and I believe this is because I pray for the strength to get through each day. I did wake up early Sunday morning and my mind was racing with all the 'what ifs?'
We went this morning to have blood drawn to check for immunity disorders and all kinds of other things. I was on the verge of tears the entire time. I just kept telling myself to give it all to God, it is in His hands....again, I find myself struggling to do this. We'll go on Thursday for the sweat test. I've been reasoning back and forth trying to determine which would be worse? An immunity disorder or cystic fibrosis? Not an easy answer there. We should know the results of the sweat test early next week, the other results will take 1-2 weeks. Please keep praying for resolution to all of this!
I will post pictures soon! We had an awesome trip home. Got to spend a lot of time with some friends that we don't see nearly enough. There were also turtle races, pool time, slip and slide, and TONS of fireworks (that's the great thing about Small town, Texas)! Oh, and did I mention the food? Can't get back to the gym soon enough!
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