1 Corinthians 16:14 ~ Do everything in love.

Thursday, August 21, 2008

A way to keep in touch...


Hi everyone! Bryan and I thought the best way to keep in touch with all that is going on with our family would be to start a blog. This way we can send updates and information on Bryce and his condition as we get it. We can also keep you up to date on what the girls are up to. I will continue to send out the updates through email every so often because I love doing that, but this will be a nice outlet for Bryan and I to share news as we get it.

As of now there isn't much information to report. I took Bryce's stool samples to the lab on Monday. The results usually come back within 7 to 10 days. Once those results come back they should confirm what we already know. From there Bryce will start on enzymes. He will have to take these enzymes before each of his feedings. We are scheduled to go in for another sweat test on September 3. We know he has CF, but they want him to have this test anyway. After the test we will head over to our Pulmonary specialist again.

For those of you reading the above information for the first time I have copied the email I sent out last Friday regarding information on Bryce. This will explain what I am talking about above. I don't have email addresses for everyone so some of you have read the news below and some of you haven't.

Hugs to all. Bryan or I will be in touch soon!

Jenny



EMAIL I SENT ON AUGUST 15th...

Some of you may or may not know this, but this week has been a very emotion and exhausting week for Bryan and I.

On Monday of this week I got a phone call from the front desk of our Pediatrician's office telling me I needed to call Children's Health Care to make an appointment for Bryce to have a sweat test. I was told that his newborn screening test showed that he had high IRT levels. I asked what a sweat test was and she said it's a test for Cystic Fibrosis (CF). I asked her what CF was (I had heard of it, but had no idea what it was). She told me that when I called Children's to make the appointment they would answer any questions that I had. I was a little confused when I got off the phone since I didn't really know what the girl was talking about. The phone call came in around 4:20 and by the time I helped Jordyn in the potty and got settled to call it was a 4:45. Well...no one was answering the number they gave me so in the mean time I decided to google CF. After reading about CF I started to panic and ended up leaving a few messages at a few different numbers over at Children's.

The next day (Tuesday) I get a call back from the lab to set up the sweat test. The appointment was made for Friday August 15th at 9:00 am. At this point after talking to my mom, Bryan's mom and my dad I started to feel like this was nothing to worry about since no one in our new of anyone with CF. Around lunch time I was sitting in line at the bank when I got another phone call from Children's. This time it was from the Pediatric Pulmonary nurse to one of the GI (Gastro Intestinal) Dr's. She was chatting me up and talking to me in what seemed to be a foreign language saying THREE times in our conversation that "they suspect Bryce's results will be positive". I couldn't get past this statement because I was like why in the world would this lady tell me this. She had said some other information about his DNA and that I am a carrier of CF and blah blah blah. So I get off the phone with her and the conversation we had starts to sink in and again I start to panic. At this point I wanted to know how they knew all this information and how she knew I was a carrier because I have never been screened for CF and neither has Bryan. (FYI - for a child to have CF both parents have to be a carrier).

From there I called her back and left her a pretty aggressive voicemail because I just wanted someone to explain to me what in the world was going on. I didn't hear back from anyone until Wednesday when the Pulmonary nurse called me back to apologize. She said somehow a step in the communication chain was skipped. Normally when people talk to this particular nurse they have been briefed by their pediatrician. Well...I never got that call from an actual Dr. The call I got was from one of the front desk workers at our Pediatricians office. So after much apologizing the nurse said that our Dr. was supposed to call us and explain to us what was going on so we could ask questions. She then got off the phone with me and called our Pediatricians office to tell them they needed to call "a very panicked mother". Within 15 mins the phone rang and it was our Dr's office. This is the where I finally got some sort of information as to what in the world was going on. Interestingly enough I was talking to a Dr. I have never even met - our usual Dr. didn't even call.

After newborns are screened in the hospital - heel prick test - the blood is sent out for all sorts of test - one of those being for CF. It wasn't until January of 2007 that they started testing for CF, which I think is crazy since approximately 10 million people are carriers of the CF gene...90% of carriers don't even know they are carriers. The IRT levels on Bryce's test came back elevated with 2 abnormal genes. If it had come back with only 1 abnormal gene then there wouldn't have been such a fuss made, but since there were 2 the red flags went up.

SO - today Bryan, Bryce and I headed to Children's for his sweat test. The test isn't painful and took about 45 mins to complete. I was really nervous that the test would hurt him, but it was pretty harmless. He actually slept through the majority of it. Once we finished up with the sweat test we headed across the street to meet with Dr. Pilser - the Pulmonary Dr at the G.I. unit. When a Dr. and her nurse don't work on Friday's and they come in to meet with you it's probably not the best sign. We knew this information going in, but at this point I just wanted to talk to someone face to face and have them answer questions.

Well...Bryce didn't sweat enough to get results, but even without those results it's 95 to 98% sure he has CF. The 2 abnormal genes Bryce has affect the pancreas. Bryce's pancreas isn't working the way it should, which causes the intestines to not absorb nutrients properly as food passes through. Basically all the nutrients and fat are coming out in his poop. We are having to take poop samples from Bryce to confirm this is what is actually happening. I don't really want to get into the whole gene thing that affects the pancreas because it's rather complex and I am trying really hard to make this easy to explain. There are many genes connected with the pancreas and 2 of his are abnormal. One from me and one from Bryan.

Bryan and I both did really well talking to the Dr's, asking questions, getting good information and such. I was with them and strong until they brought up the girls. Once the 100% positive results come back they are going to write up a prescription to have the girls sweat tested as well just to make sure they don't have CF. They also suggested our siblings get tested to if they plan on starting families. Just a little history on how this works....When 2 carriers of CF have children they have a 25% chance that the child is not affected at all, a 50% chance that the child is just a carrier and then a 25% chance you will have a child with full blown CF. So...basically the cards just didn't play out for little Bryce, but there is good news. Since this is being caught so early there are vitamins and medicines that our little guy can take to help him grow and fatten up. The only bummer thing as of now is that we won't know until down the road how mild or severe Bryce has the disease. It could be that he has a very mild case and will live a normal life and then there is the other side of the spectrum.

At this point Bryan and I are just relieved to have answers and to know what we are dealing with. Bryan has been so positive through all of this and I am thankful for it. I had a small breakdown today after our appointment, but after that and after a nap I woke up feeling completely at peace. Bryan and I both are feeling at peace. Bryce is in God's hands and He has a plan for our little guy.

I know this email doesn't give all the details, but I don't want to make this email longer than it already is. Bryan and I appreciate the prayers and support that we have already received. If this is the first you have hard of this information please don't feel like we were keeping things from you. That was not the case at all. We really have been so overloaded this week with the first week of school, volleyball schedule, Bryce's news, not much sleep...see where I am going with this - that by the end of the day we were just too drained to talk. Bryan and I haven't been the most social this week, but it's because we just were both feeling overwhelmed and stressed. I will keep everyone informed as we find out information. Just keep Bryce in your prayers. He is a strong little guy and I know he is going to rock and roll his way through this
.

6 comments:

Amy said...

Love the title!

Sadie Elizabeth Kraus said...

Bryan and Jenny,
I am so sorry to hear your news. I have been through a lot this year with Sadie being 12 weeks premature so I understand the stress and some of the feelings you are going through. Please know that you are in my thoughts and prayers and let me know if there is anything I can do to help.
Take care,
Katie Kraus (Blackwell)

ShaunBusted said...

I eat stool samples for lunch!

Bryan is a stool.

Love you guys! Slap your husband for me!

Windy Bottoms said...

Jenny and Bryan,
I can't seem to catch you guys on the phone, so I will leave you a comment. This blog is a wonderful idea -- so 21st century of you!

I am so excited that God has blessed your family with this special little boy to love. I am sure he will bring you a lifetime of joy.

Please know that you guys are in my thoughts and prayers and that we will do anything we can to support you.

Hugs,
Windy

The Eady's said...

Hey guys I am so glad you decided to start a blog! I hat eto hear about Bryce's condition, the Dr.'s thought that Maddox had CF too, but it turns out I was the only carrier, not Terry. However, all the test revealed that our little Maddox ended up having a hernia and food allergies! In his short 2 years of life Maddox has lived up to his nickname "our little deductable!" There is a girl that used to skate for GT Speed and Mr. Blair, Lacricia Lobo and she is a Respitory Therpist in ATL. She helped answer a lot of my questions and was a great deal of support during the time we thought Maddox had CF. I will be sure to keep you guys in our thoughts and prayers and like you said, it is all in God's Hands! Love, The Eady's

Casey said...

Dear Jenny and Bryan,

Our family has been thinking about your family and we want you to know how much we care and support you guys. Bryce and Elijah will the toughest pair of golfers the greens have ever seen!

Love,
Casey and Tim