Sunday, August 29, 2010

Day 10

Well we have officially been in the hospital for 10 days and it is looking like another 2 weeks before we get to go home.
This week he will be having a allergy test done and then on Thursday or Friday he will finally be getting his Fundocplication surgery and a g-tube....
Yep we are getting a g-tube. I don't know how I really feel about this. He seems to gain weight good on his own but right now they want to get him to the 75th percent and we are only at the 50th. The docs are telling me that this is best for in the long run. I rather have him around for a hundred years then not. So G-tube it is.
I am nervous on how Brianna is going to react to his G-tube. She will probably try to give one of her baby dolls a g-tube. So I was thinking of going to get a cheap baby doll and have Nathan some how make it look it has a g-tube. She already gives all of her babies CPTs while I am giving Bryce his. Maybe she will grow up to be a doctor. Yeah right, she will be a perfect attorney. That child negotiates everything. I mean EVERYTHING and is stubborn as you can get.
Besides that nothing much is going on. They added some more medications to our ever growing list. His antibiotic and steroid will actually end when we leave the hospital so that is good. After his surgery and g-tube is inserted, they will slowly wing him off of his reglan.

Wednesday, August 25, 2010

Hopefully the worse is over...

Now we are in PICU.... Yes, ICU. Thank God our great team of doctors decided to do the bronchoscopy and the esophagogastroduodenoscopy ( EGD) first before doing the the fundoplication. They said the outcome would of been horrific.
During the procedure, all of his airways kept closing. They were very inflamed and irritated. It appears that Bryce has severe Cystic Fibrosis, severe asthma, and floppy airways. ( I forgot the medical term for it. There is only so much new medical terms that I can store in my head at a time.) He should out grow his floppy airways. Now we are are going full force on his cystic fibrosis. We will now will be starting treatment on him that you usually don't start doing until a child is 1 year of age. BRYCE is 3 MONTHS. I will post pictures from his 2 exams at a later date.
That is all I am going to write for now. I have to wrap my head around all this... Maybe I will write more later.

Tuesday, August 24, 2010

Friday, August 20, 2010

Wednesday, August 18, 2010

Surgery Day.....

We are to report to the hospital at 8:00am tomorrow (Thursday). They will be doing a couple of labs before proceeding with surgery. I will keep everyone posted....

Tuesday, August 17, 2010

Surgery!!!!

We had a clinic visit. No part of it was fun. I knew when I woke that it wasn't going to be a fun one.
The day started out as a normal work day but it seemed as though everyone had an emergency and needed my assistance. At noon I told my boss I have to go and just call me if he needed anything or if a crisis breaks loose. We are undergoing a lot of management restructuring. If you don't know, I am the Assistant Director of Human Resources aka babysitter. LOL... I always tell my boss he lied to me in my interview.
I was running late. The parking lot was like 98% full. Some guy saw me and told me where he was parked and said he would wait for me so I could get his spot. He must of been an angel! In the parking spot while I was getting Bryce in the stroller and getting the diaper bag, medical info backpack, and my purse, I realized I forgot to do a major project at work that was due 3 today. It is now 1:30 and nobody else knows how to do it. GREAT!!!!
I been working like crazy showing my boss that my job will not be affected by my crazy home life now. Now this is the first time I dropped the ball and I mean BIG BALL. I called my boss and president of the company to inform them about my crisis. They both starting laughing and said "Jen, you turned it in last Thursday." Oh, I don't know what day it is anymore at work. I have notes everywhere in my office to try to keep me out of trouble.
So we get inside the clinic and talk to Claudia, the receptionist. We know each other well since I see her weekly. After I signed my name a million time, we finally sat down. A family walked in with a boy. He looks like a healthy 10 or 11. I see him but the infamous mask on that all CF patients have to where while in the waiting room.
They finally get settled in and I asked "Ya'll from San Antonio." They reply "No." Then I just dropped the conversation.
About 5 minutes past and the mom asked "Are you here to see Dr. Courand?"
"Yes"
She came and gave me a hug and started talking to me. Come to find out, she lost a daughter at the age of 13 due to complications to CF. She would of been 18 this year. Her son was 10 and has never had complications with CF. He had never been hospitalized. He just has sinusitis. (The boy I was talking about earlier about looking very athletic.)
I think she realized after she told me about her daughter, I didn't hear a thing about her son. I know she didn't say it to scare me, but to inform me about her experience.
They finally call us back. The usual routine occurred. I saw the PA today because it was just a follow up from last week. She asked me about how is reflux was doing. I informed her that he was not vomiting anymore but that he was still having wet sounding burbs and coughs. The minute I said that he starts coughing. She opens the door and gets Dr. Courand. She walks in and said " We must fix this. The medicine (Reglan, Zantac, and Prevacid) is not doing it."
She sent Lisa (the PA) to the GI wing to find the Pediatric GI Surgeon because they were not answering the phone. The specific Dr they were looking for was in surgery. Finally Lisa found one of his partners and they agreed that Bryce is going to need surgery.
Fundocplication is the type of surgery he will be having. During the surgery, the upper part of the stomach is gathered, wrapped and sutured around the lower part of the esophagus. This allows the lower part of the esophagus to pass through a small tunnel made from the stomach muscle. This will help prevent acid reflux, and strengthen the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily. (http://heartburn.about.com/od/medicalprocedures/a/fundoplication.htm)
Supposedly this is a common surgery that happens. They (CF clinic) informed that the only real complication that they have experienced with the surgery was a girl had to get a g tube because her muscles were to stressed after the surgery :(
Hopefully, everything will go smooth and Bryce will not have to get one.
I will let everyone know when the surgery is schedule. The surgeon will be calling me in the morning to give me more information. They are aiming for Friday of this week.

Tuesday, August 10, 2010

WHAT A DAY!!!!

I cannot tell you how happy I am that yesterday has come and gone. I thought the day wouldn't be to bad, I got to sleep an extra hour and a half because Brianna had her 3 month check up at the ENT. All went well except that they are sending her to get blood work. They think she has a severe food allergy or her sinus cavities didn't develop correctly or something like that. I feel bad because what occurred a little later that day caused me to forget everything that was said at the ENT appointment.
OK....Back to how my day went. After the ENT, We were on the way to daycare. The CF clinic calls and say " Can you bring Bryce in right now?" I said "Sure, but I am an hour away" ( For you who don't know, I live in the country not it San Antonio.) They replied "OK, we will have the receptionist to notify us when you arrive." Then the conversation ended. I was stunned and dumb found. WHAT THE HELL is going on NOW!!! That is all I could think of.
Well let me back up. I called the clinic on Monday because Bryce start spitting up bad again. All they told me to always keep him sitting up at a 45 degree or higher at all time. Fine, that was easy. So I was so surprise when they called and wanted me to come in today. I mean he has an appointment on Thursday.
So I am now at the clinic, almost in tears. I wait about 10 minutes and my mom showed up. THANK GOD!!! They take us back. Come to find out, the doctor and the PA both couldn't sleep the previous night and wanted to see Bryce immediately. That somewhat brought peace to me. It made me realize that these people TRULY care.
Then my heart fell to the floor. Bryce dropped weight, he is under the 30% range. I have worked so hard to put that weight on him. Next, they listened to his breathing, lifted up his shirt to show me how it would look when he is struggling to breathe. I almost broke down thinking "Am I that bad of a mom that I couldn't tell he was struggling to breathe." I noticed on Sunday that he was wheezing but it went as fast as it came. I may be over exaggerating when I say struggling, he was just working harder than normal, but i felt it as if he was struggling.
Last but not least, they think he is growing staph in his lungs!!!! What??? Isn't that horrible???? I am freaking out. Asking a million questions.
Finally the nightmare(appointment) is over. We left there with 4 new medicines!!!! Now I am trying to get into the routine of 4 new additional medicine. They don't foresee him having to keep taking them once this little episode is over. THANK GOD!!!!!
After all this, I go to the office and take care of a couple issues, then I went and picked up Brianna at daycare (Bryce went to work with me).
You think my day is over, but I am just in the middle of it. Now we are at the grocery store. Brianna is in the stage of wanting everything in sight. I am taking things out of the basket as fast as she is putting them in. Finally we are at the check out line. I look down and she has only one shoe on.
I asked "Bri, where is your shoe?"
She replies, "By the bread."
So now we get out of line and go to the bread area. Nope not there, so now I start looking everywhere. Still no shoe. Finally I see a little boy that has her shoe in his hands. I am trying to get the shoe back and he isn't giving to us. Finally his mom threatened him. I am so annoyed at the point but there is more to come.
Now we are back in line to check out. This guy walks by and asks if Brianna could have a lollipop with a balloon tied to it. Sure, why not. Finally everyone is happy and we are heading out the door. All sudden she starts screaming, I am looking around trying to figure out what happen to her. I realize that her balloon came untied from the lollipop and was floating away. While all of this was taking place, I had 4 works swarm me asking me all of these questions like had I spanked her in the store. Finally, the manager walks up with another balloon and explains what happened. I was so afraid I was going to have child protective services at my house time I got there by how this was all played out.
Hold on there is more to my day. I walk to the pharmacy and to pick Brianna's 2 prescriptions and 4 of Bryce's prescriptions. They informed me at this time, that they were still working on Bryce's and that it would be another 10 to 15 minutes. I was thinking, ok by the time I load the kids and groceries and pull to the drive thru it should be ready.
When I finally get to the drive thru, the lady wants me to come back inside so that I may speak with the pharmacist. I told her no, the doctor explained the medicine in great detail to me and that I don't need someone to read the label to me. I am more than capable of doing that myself. Yes, my parents taught me to be respectful to my elders but I am not an idiot nor do I like to be treated as a child. I am a very responsible 26 yr old.
Finally, I get my prescriptions. We have a 20 min drive home. We get home and I am organizing the medicine and realize that Bryce is missing a medication and the pharmacy is closed!!! The main one of all the ones to be missing!!! I finally called it a day. Got Bryce, did both treatments, put Brianna to bed, then finally went to bed myself.
I sure hope I don't have another day like this for a long time!!

Friday, August 6, 2010

Improving Access to Clinical Trials Act passes U.S. Senate in Victory for CF Advocates

Improving Access to Clinical Trials Act passes U.S. Senate in Victory for CF Advocates
http://www.cff.org/aboutCFFoundation/NewsEvents/08-06-Senate-Passes-I-ACT-Victory-for-CF-Advocates.cfm

August 6, 2010 The U.S. Senate last night passed the “Improving Access to Clinical Trials Act”(I-ACT), a bipartisan piece of legislation championed by the Cystic Fibrosis Foundation, its advocates and 120 other health advocacy organizations. The legislation enables patients with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits. “We are one step closer to breaking down a serious barrier to participation in clinical trials, which one day could deliver a cure for cystic fibrosis,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “This legislation represents an important opportunity for people with CF to take part in groundbreaking research that was previously out of their reach. We are elated that this bill has been approved by the Senate.”
The legislation was introduced by Senator Ron Wyden, D-Ore., with Senators Chris Dodd, D-Conn., James Inhofe, R-Okla., Richard Shelby, R-Ala., Dick Durbin, D-Ill., as original co-sponsors. An additional 14 co-sponsors also signed on.
Current law prevents many people who receive Supplemental Security Income (SSI) from accepting research compensation because it makes them ineligible to receive government medical benefits. This penalty has stopped significant numbers of people with rare diseases from participating in clinical studies.
Following Senate approval, the bill now awaits consideration by the U.S. House of Representatives. Reps. Edward Markey, D-Mass., and Cliff Stearns, R-Fla., are leading the effort to pass the bill in the House. The legislation, HR 2866, is co-sponsored by 135 members. Passage of this legislation is particularly important for people with CF, a rare genetic disease that affects 30,000 people in the United States. A limited patient population makes it challenging to find enough people to participate in research studies evaluating the effectiveness of promising new drugs.

Thursday, August 5, 2010

First Hospital Stay

We had our first hospital stay. Our first with either child. Brianna has never been to the hospital except for her ear surgery but she was out in 2 hours.

It all start Saturday, every time Bryce would eat he was spitting up. I know,I know babies spit up but not my Bryce. I found it to be weird but I honestly thought he just had a lot of mucus on his tummy because he sounded congested and coughed some up earlier.

That night both kids went to my parent's house. Mom called me after I was out of church on Sunday stating that he still wasn't keeping a bottle down. I called the CF clinic and they had us go to the emergency room and the doctor was calling ahead so that the ER doctor would see him right away. I was so scared. I have never taken one of my children to the ER and even more scared that the doctor was calling ahead so they would be ready for him.

Now we are in the room with the ER doctor. You know the typical questions they ask you. Then he asked me "What kind of vomit?" I replied " Like the Exorcist." He just cracked up laughing. No lie, 5 seconds later it happened. It shot across the room. They ran us up stairs and did a sonogram and an X-ray. Results came back, NOTHING! Everyone was surprise. Then it happened again.

The ER doctor called Bryce's CF doctor and they agreed that he needed to be admitted. It took us 3 HOURS to get a room. 3 HOURS!!!!

That following morning (Monday) they did 3 more X-Rays and another sonogram and still nothing. Our team of Doctors were coming to the conclusion it was a virus. They decided Bryce should stay another night. They wanted to monitor his lungs because the x-rays were showing aspiration in them.

It's now around 3 o'clock and he kept a bottle down. YEAH!!! All night Bryce is keeping his bottles down. Whoohoo it looks like we are going to go home.

Early Tuesday morning the nurse comes in and says "I am preparing your paper work for y'all to go home, all I need is the summary from the doctor so I can finish my part." We all know how busy doctors are. So she warned me it would probably take some time before we would be able to leave.

At 9am that morning, Bryce has another shooting vomit. We call the nurse and she calls the doctor. Guess what!!! We are staying again and having another test done at 1pm that day.

Finally at 4 pm on Tuesday we had a diagnosis. Bryce has a condition that his stomach doesn't relax so that it can empty at a normal rate. This was causing him to have acid reflux. The doctors said that this is extremely common in babies and that usually they out grow it. Since Bryce is a CFer, they gave him medicine to help with it. In addition to his Zantac that he was already taking, they added Reglan.

We have been vomit free in our household for 48 hrs now!!!!

Oh to top everything off, Brianna would sell Nathan and I in a heart beat so that she could move in with Nana and Papa. Of all days she decided she didn't want to go with them was Sunday!!! The day we needed her to stay with them. You gotta love 2 yr olds ;)