Our First Clinic

Happy November! Yesterday seemed like such a long day. We took Bryce to his first clinic. Clinic is when we get to meet with Bryce's entire CF team in the same place on the same day. When we checked in they immediately took us back to a room. They don't want CF patients waiting with other CF patients because of possible germ spread. After we checked into our room each of the specialist started coming in to speak with us. Our room was basically a revolving door of CF team members. We met with Bryce's nutritionist, pharmacist, the GI doc, lung doc, respiratory specialist and the groups social worker. We received so much information yesterday. I will try to keep this blog as short as possible, but still keep in as much information as I can. Here are some of the key items...

• Bryce is 24-2/3" long and weighed in at 12.45 lbs. This is great news. Since starting the enzymes he has continually gone up in weight and height. However, the down side is that Bryce's BMI (Body Mass Index) is only in the 5% - his weight is a little low compared to where his height is. They gave us a "red light" meaning that we need to work on fattening this boy up even more. One way they want us to do this is at 4 months we will need to supplement with 1 bottle of formula a day. I wasn't thrilled about this news, but for some reason when they started asking me how long I planned on nursing him I knew that the supplement word was coming. The reason for the formula is that through studies they have found that nursed babies do rapid growing for the first 4 months and then their growth slows a bit. Formula fed babies don't grow as fast for the first 4 months and then their growth really picks up. Breast milk has only 20 calories per ounce whereas formula has 25 calories per ounce. Since Bryce needs to be on a high fat diet they think him having a bottle of formula will help him gain more weight. Higher fat also means adding another enzyme to this feeding so instead of the one he takes with his nursing feedings, he will need 2 enzymes with the formula feedings. He will also be starting on solids in a few weeks so that should help him fatten up too. Our goal by the next clinic (Feb. 2, 2009) is for him to weigh in at at least 15.45 lbs.
  
  

Bryce was all smiles while at clinic. I think he won everyone over.

• The respiratory specialist came in to teach us how to use a nebulizer and also how to do CPT (Chest Physical Therapy). There really isn't much to the CPT - we "pat" him in a few areas on each side of his front, the sides and 3 areas on each side of his back. We do each section for at least a minute. Eventually the vest will do this for us, but they don't make vest small enough for newborns! Bryce LOVES to have his back patted so he doesn't seem to the therapy. When I did it this morning he was just smiling big as usual. The "neb" machine is very easy to use. As for now we are on a use as needed basis on the breathing treatments. At the first sign of a cough we are to start them. If and when he takes the treatments it will be 3 times a day and usually takes about 10 minutes each time. Other "first line of defences" are saline nasal drops and the aspirator. Apparently the aspirator will be our best friend this winter. I am already learning this because Bryce has a little head congestion currently so it's hard for him to breath at night. He is getting lots of snot suction! As far as Bryce's lungs go he is currently very clear in the lungs which is great news. Let's pray it stays that way.

Bryan and I passed the wait time by taking pictures of ourselves. Awwww....

• Bryce had his first throat culture. Each time he is at clinic they will give him a throat culture. I thought he handled it pretty well considering how far they had to stick the swab down his throat. He had a look of "what in the world was that" on his face after they swabbed him. They do the culture to see if there are any bacterias growing that they need to start combating. Usually they don't grow bacteria this early, but it is possible. The longer we can prevent bacterias (some are worse than others) the better. I won't know the results of the culture until next week. I don't remember the name of the bacteria, but almost all CF patients will eventually grow a bacteria that is hard to fight so pray that Bryce keeps bacteria free for as long as possible. There is also another bacteria (again, can't remember the name) that can be spread from one CF patient to another that they don't want Bryce to get. Hence why we don't wait in the waiting room and we wait in a private room. When Bryce is a little older he will have to wear a little surgical mask while he is at clinic. They don't make the masks small enough for babies so he is off the hook for now. I guess as of now since things are going so smoothly for Bryce that it's hard for me to understand the severity of him getting sick, but every member on the team couldn't stress enough as to how important it is to keep Bryce as germ free as possible. So again, if we are acting anal about who is around Bryce and who touches his things, it's for a reason. No offence to anyone other than we are keeping Bryce's best interest at heart.

• We did learn that we pretty much don't qualify for any financial assistance. There is a program called the Katie Becket program that helps pay for co-pays and what not, but to get on with this program is close to impossible unless your child needs nursing care 24 hours a day. The reason for this is because a few years ago they did a review of the program and found that the state of Georgia was paying out 5 times more than any other state. Once they investigated they found the administration of the program were the ones that were working the system. (How lovely...no?!) So, all of these families in the program were basically told they no longer would be given assistance. I also received information in the mail about CMS (Children's Medical Services), but we make too much money to be on this program. I didn't realize a teacher's salary for a family of 5 was considered making too much money, but apparently that is the case. I can't believe if you are considered "middle class" there isn't much financial assistance out there for you. What a flawed system! Between the specialist co-pays, gas, parking fees and the portion insurance doesn't cover, the dollar amount adds up fast. The positive way to look at it all...at least we have insurance because there are folks out there that don't even have that.

I am sure there are more things we learned that I am leaving out, but like I said it was another information filled afternoon. We were at clinic for a little over 3 hours. They kept asking us if we were feeling overwhelmed, but I never really felt that way. I really liked having everyone in one place. I got all the questions I had answered and more. I love the idea of one stop shopping as far as doctor appointments go. Our next clinic will be February 2. Until then Bryce continues his regular Pediatrician appointments and monthly RSV appointments. Hopefully we won't be calling any of the CF team with problems anytime soon. We just need to make it through March with no major problems. Then we don't have to be AS cautious about where and who Bryce is around.

Sydney and Jordyn were Minnie Mouse for Halloween.


Bryce was a Lil Punkin - I promise he was having a good time. ;)

The gangs all here and ready to Trick~or~Treat. The kids were the following:

Bryce the Lil Punkin, Sydney and Jordyn the Minnie's, Max the Cowboy, Ethan the Dragon, India the Fairy, Natalie the Bee, Aidan "I am Optimus Prime", Bella the Tellatubie, and last but not least Makenzie the Baby Glow Worm. Cute bunch don't you think?!

Well that is about it for now. I will keep everyone updated as we learn things and to share pictures of the kids. I have attached a few pictures from Halloween. The kids had a blast over at Ethan's house for his annual Trick-or-Treating event. Next thing you know it will be time for the holidays! Hugs all around ~