Thursday, March 12, 2009

Another visit to the U of M

We had our third appointment at the U today and Gavin has grown an inch and now weighs 9 and a half pounds, which is wonderful! They again adjusted his enzymes so hopefully that will help him to gain even more weight. He is starting to figure out that after the enzymes comes the "good stuff" so it is getting easier to feed him the applesauce. The nurses in the clinic (who we already are getting to know!) love to check on Gavin when we are in and they all comment on how cute he is :) Our respiratory therapist is having both her knees replaced so we won't see her for nine weeks and we will miss her! She always gets us laughing when she is in the room.

We learned today that there is a clinical research study on his particular kind of CF that works with the pancreas, allowing it to absorb fat. Basically, his pancreas creates the correct kind of enzymes but they are not able to move through the cell walls. The research studied a medication that allows these enzymes to move through the cell walls and it sounds like they have gotten success from these trials. (The U of M has been participating in this trial) It will be several years of more testing before the FDA would allow any testing done on children or before they will approve the drug for general CF patient use but it was very uplifting to hear this news! He has the second most common kind of CF but it still is a rare form of disease so we are thrilled that this study is being performed on his particular strand of the disease. If we get the chance we will definitely enroll Gavin in this study. From what we understand, this medication would also help to prevent the mucus from building up in his body which would be a great thing for his lungs. The study is called CFTR Modulation and for more info follow this link:

We have another appointment two weeks from today for our nutritionist Kathy to decide if we need to adjust Gavin's medication more. He may potentially need to take a medication that keeps the acid in his body (which is normal) from breaking down the enzymes while he digests them but we won't know that until his next appointment.

For those of you curious, if Gavin gets a cold or flu etc. we don't have to rush him to the doctor immediately. Today, Dr. Laguna told us that we need to call if Gavin has a cough that persists more than two days and they will put him on an antibiotic that will prevent any bacteria from creating infections due to this cough and the build up of mucus that occurs when you are sick. I asked about his body becoming immune to antibiotics and Dr. Laguna told us that they save the "big guns" for very serious infections (if he needed to go into the hospital etc) and they have many kinds of antibiotics to choose from which helps to prevent any immunity.

We will start Gavin on solid foods when he is around 5 or 6 months. We will start with rice cereal to see how his body digests solids and how we need to adjust his enzymes at that time. (His enzyme intake will always be based on his height/weight ratio) Then we will move to meats because of their high protein levels and after that we will try out fruits and veggies. Kids with CF need to eat 50-100 percent more calories than a "normal" child so this lucky guy will be able to eat food packed with butter, salt etc that would cause any of us to become obese. We also asked when we do and don't need to give Gavin enzymes when he gets older. If he just munches on a handful of pretzels or Cheerios we don't need to give him enzymes because of their low fat content. However he will need to take his enzymes before having a bottle of milk, especially with whole milk because of the high fat content. Out of curiousity we asked what he does if he drinks beer when he gets older, and she told us that he won't need to take pills for that either but he will if he decides to go on a food run at 2 a.m. haha.

This may sound horrible, but each time we go to the U we see several kids that are in wheelchairs, deformed, on oxygen etc. and while we are devastated that our little guy suffers from CF we thank God that it is something that can be maintained and we will have him here for a very long time. It is fun sitting in the waiting room and watching all of the kids walking and playing around, it just shows us how resilient kids are and that none of them let their illnesses slow them down!

1 comment: