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Friday, October 7, 2011

Update on CF Appointment

Before I get to the update, I have to say that I am still without a computer so I have to use and old one. It keeps booting me off of Facebook when I try and play Words With Friends. I'll keep trying but it isn't much fun. This computer also won't let me comment on blogs so I am reading. I just can't comment. Very frustrating.

A wonderful thing happened yesterday. Leo worked hard all morning so he could go with me to the appointment. Words do not even begin to describe the relief I felt when I got that text. If you are reading, Leo...a hundred thank yous! To give you an idea of what driving to those appointments are like, imagine being afraid of heights and being at the top of a 30 story building or being afraid of sharks and spotting one in the ocean. There is a chance that you will be okay or you could fall off the building or get attacked by the shark. We could go to the appointment and everything could be fine or we could go and the disease finally caught up with the boys.

It was a good appointment for the most part. Nico gained 11lbs. since June. Tommy gained 1. Nico and Tommy both grew a few inches. I like everyone on the CF team but the nutritionist and I really have this wall between us. I don't really enjoy when she is in the room. I want her to say, "Good job! Keep it up!" and she might say that but all I hear are the "tips" of what more we could/should be doing. I never was one that could hide how I felt so I feel bad that I can't just put on a smile and nod my head until she leaves. I have a feeling I give off the feeling that I don't like her. Mostly because my family says, "You can tell you don't like her." I know she is just doing her job but she has a way of making me feel like I am not doing enough. Nico gained 11lbs so I want to say, "Back off." I don't but I want to.

With the boys both being sick or having issues lately, we were nervous that their pulmonary function tests were going to be bad. The therapist said, "Instead of excellent/excellent, they were just excellent." I love that. Normally, their PFTs are off the chart normal for everyone, not just kids with CF. When you have CF, once those start going down, you can't reverse it. The good news is that the doctor said the boys aren't really CF involved at all. Their lungs sound clear and the x-rays are showing that they are clear so they are more asthma involved. With the PFTs going down because of asthma, that is reversible. He said once we get that under control, they will be back up to excellent/excellent. Being that they have sinus issues (that IS related to having CF), it makes controlling the asthma a little harder. He wants us to aggressively treat the sinuses (my ENT is going to be able to buy a new car with all the business he is about to get) in order to control the asthma. He feels that Nico was getting a sinus infection and on top of the weather changing, that is what caused the attack on Sunday. He said that though they aren't CF involved, we should continue with the CF meds (it didn't even cross our mind not to) and then he added a few meds to the list but nothing too bad. The relief from hearing that Nico's breathing trouble on Sunday was not CF related was enormous. The fear that it meant that his health was starting to decline was erased. We left the office with a mask and nebulizer meds in case Nico gets in trouble again and with the great feeling that the doctor was happy at how well they have been doing.

I have asthma and Leo has asthma and both are controlled without much thought. Once it is controlled, people live a full and long life with asthma. There is no life expectancy number hanging over someone with asthma. Sinus involvement is a nuisance but it isn't going to be the reason someone with CF dies. Like asthma, it can be controlled. The scariest part and the part that causes patients with CF the most trouble is lung involvement and our boys are not lung involved. That is another answered prayer. God is good and praying works!

By the way, I could have made this a post about the chaos before the appointment, the mishaps while driving to the appointment, and how I wanted to wring the boys' necks during the appointment but I chose to go the more positive route. :)


At October 8, 2011 at 6:41 AM , Blogger Kendra Mareva said...

Thanks for the update! So glad to hear the appointment went well. :)


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