Ups and Downs: Our first visit to Children's Hospital Colorado
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!!
Our appointment was on February 7th at the Children's Hospital in Denver. We really like our new doctor and team of therapists and nurses. We found out that at 19lbs12oz and 28.5inches Walter was finally at his goal weight 51% of weight for height. Yay, major up! They changed his therapy regimen a little in that we will be doing inhalers instead of nebulizers. I was like "How do you get a baby to use an inhaler?" But they have this handy chamber with a mask attached (see below) that makes it pretty easy, and it's a lot faster. You only have to keep the mask on his face for about five breaths instead of 20mins. Up!
Check out this kid. He loves it :)
Then we got sent down for a routine x-ray since the films from our old clinic in IL hadn't made the transfer. As soon as we made it back upstairs the CF team had the x-rays electronically; pretty slick. However, the x-ray showed a little congestion in one of his lung lobes so we'll be doing a little extra CPT "thumping" in that area to try to get it cleared out. Slight downer, but it didn't seem too serious and we were glad they caught it since he wasn't having any symptoms. Worst case scenario; if it's not cleared by our next visit, they will do a broncoscopy and clear it out manually in order to prevent infection. Last of all we had labs drawn to check all his vitamin levels and enzymes and such. It always seems like they take soooo much blood! But he did fine and stopped crying even before the lab techs were finished. They gave him a stuffed animal pig as soon as he was done and he loved it! Finally we were done :)
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 :)
