Living with Cystic Fibrosis has a lot of ups and downs for our family. Down when he's sick; up when he's healthy; down when he needs new meds or more treatments; up when we master the new thing and life falls back into a normal rhythm and routine again. We've been pretty much "up" since early December. Walter hasn't had any colds or extra coughing since then and we've been doing just the standard two treatment sessions a day. He's been so happy, and learning to crawl and pull up, and eat more foods and all the normal baby things. It's easy to forget he has CF.
Plus he's super cute!!
Check out this kid. He loves it :)
Last of all Chuck and I got a cup of coffee and some gelato in the hospital cafeteria and Walter had some blankie. Yum!
This brings us up to yesterday, when Dr. Liptzin called with his lab results. His liver enzymes were elevated so we will meet with a liver specialist to rule out any major problems. Liver issues are not uncommon in CF. A little scary, but we are optimistic. If there is something going on with his liver he may need to be on another medication. Also he had a new organism show up in his sputum culture. Pseudomonas. The bug that strikes fear into the heart of every CF parent. Apparently it's not Pseudomonas aeruginosa which is one of the more damaging bugs to lung tissue, but it's in the same family. Major down :( So we will treat it with inhaled antibiotics and get another culture done in 4-6 weeks.
Eventually almost everyone with CF will get this bug. Their sticky lung mucous just harbors it, and apparently it's everywhere; in the air, the soil, warm lake water...so it's not like you can hide from it. I just remember a doctor telling me that the longer you can avoid this one the better. So I was really sad when I found out he had it at only 9 months. I don't know if there's a typical age when kids usually first culture it; he just seems so young. We've definitely been plunged back into reality. Walter does have CF and it will be an ongoing battle to keep him healthy.
Our biggest "up" is that Walter is still feeling just fine! Also we are thankful for the excellent CF team we have. They are proactive and focused on preventing him from getting sick rather than waiting for symptoms to show up.
Daddy and Walter with his new Piggy. He loves to snuggle it :)
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