We thought we'd give a little update as to how our boy is doing on his 6 week birthday. We are starting to see glimpses of a much happier little guy! The last week and half he's really started to show some of his personality. He is interacting with Mommy and Daddy and cooing and smiling alot. Since receiving the CF diagnosis on October 3rd we've gone through a few changes and slowly settled into a "new routine." The routine will continue to change but the steps we take will remain the same.
STEP 1- TreatmentsMost people know that mucus build up in CF patients affects their lungs, but it also affects the pancreas and digestive system as well. The mucus builds up around the pancreas and blocks it from releasing enzymes into the digestive track. The enzymes attach to the food and slowly break it down for the body to absorb the nutrients as it travels through the digestive system. Crosby currently has pancreatic insufficiency and will continue to have those symptoms. To combat the insufficiency we have to give him enzymes before every feed. The enzymes will last for 45 minutes to an hour, meaning any feed lasting longer will require more enzymes. They have worked like a charm since the first time and continue to be a huge part of his day to day health. The second part of his day to day health are his breathing treatments and CPT exercises or better known as "bopping". He takes 2 breathing treatments and gets bopped 2 times a day. Breathing treatments consist of 2 puffs from a Ventalin inhaler with chamber and baby mask. Very soon after the inhaler we start bopping, which is always a toss up. Bopping consists of firm patting on 10-12 specific areas around the chest and back for 3 mintues per area or 30 total minutes at minimum. Sometimes he hollers and screams, other times he sleeps through the whole thing. It breaks our heart to hear him get so upset when doing it but we know its for his own health and we assure him of that every time. Bopping breaks up the mucus in and around his lungs and allows him to cough it out or move it along. His scans don't show him to have any mucus build up in his lungs for now, but they want us to be proactive to prevent infection or damage to his lungs later. Below you can get an idea of what bopping is (this was a good session).
STEP 2- Team CrosbyWe are very thankful to have Arkansas Children's Hospital (ACH) so close. Crosby will see his team at least once a month for the first year of his life and then graduate to every 3 months as he gets older. Team Crosby consists of 5 specialists in the Pulmonary Clinic - his Dr, nutritionist, respiratory therapists, social worker, and nurse. Each member is specific to him but may also have other patients individually. They have been nothing but supportive, patient, and very positive for us as we start this journey. He will continue to see the "FAB 5" until he becomes an adult. Part of the deal with having CF is that he can't be around other kids with CF. As he gets older he will have to wear a mask as he enters clinic. Likewise, all his doctors and nurses change their gown and gloves every time they switch rooms as to not pass germs or bugs from one CF patient to the other.
STEP 3- Help of family and friendsThis is the part of his day to day health that everyone can contribute to. Hand hygiene around him and in our home is one of the best things we can do to keep him germ free. Before anyone is allowed to hold or touch him we have to make sure we wash our hands and use hand sanitizer. We are also asking that everyone get updated with their flu and pertussis (whooping cough) shots if they plan to spend time with him. Another request from us is to refrain from kissing on him. I know we all want to plant one on his chubby cheeks but we have to limit his exposure to things (besides, he sometimes smells like sour milk and baby toots!). This will get better as he gets older and begins to build up his immunities. Recently his pediatrician has instructed us to be extra cautious during the cold and flu season so as to not unnecessarily expose him to illness. In her words, we "need to be very, very careful." This means he can't be around people who are sickly, recently sickly, been around those who are sickly, or any children. Sickly includes things like colds, runny noses, coughing, or flu like symptoms. This doesn't mean we don't want to share him with everyone, it just means it will be on a limited basis. We know this sounds like a lot, or maybe unfair, but its what will keep him healthy and it's only temporary. These things will lax as he gets older and his immune system becomes more effective. Having everyone adhere to these requests will best serve Crosby and keep him from getting sick or having to visit the hospital.
We love and appreciate all of our friends and family and are excited about this time in our lives and want to share it with all of you. The visiting restrictions are only for a very short period in his long, healthy life. There will be plenty of time for us to spread the Crosby love with everyone. We don't want anyone to think we are shutting them out of his life, but understand that his health is our number 1 priority at this time. We plan to continue to send out updates to everyone on a frequent basis. Prayers, phone calls, and texts are always welcome....and home cooked meals (Lance wanted me to add that.)
Stay tuned for the next episode!
-Carmen and Lance
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