Moving Foward in a Cold Front

As Faith grows we continually adjust her Medicine, Therapy and Diet. We are on constant watch for signs that a new adjustment needs to be made or that one of the adjustments already made are having a negative effect. This makes it very difficult to diagnose whats going on with Faith when unusual symptoms start popping up. Several times Faith has had a mild fever and accelerated heart rate. It took us a few of these occurrences to realize that these are typically Urinary Tract Infections.



A couple of weeks ago Mason was so kind to bring home a virus that has been going around. We were as cautious as two parents could be, but with Mason it's hard, especially since he loves to play with Faith and she loves playing with him too. Faith started to show signs of a temp and an elevated heart rate. ("0h great another UTI") but after a day had passed she started have alot more mucus in her trach and even if her trache was clean, Faith's breathing was labored. By Wednesday of last week we were ready to take Faith to the ER for her difficulty breathing. By now we had realized Mason had given her his cold. (a common cold looks very different for a kid with a trach) The hospital told us to stay home and have Faith spend more time on her ventilator. We did and it worked! After two days with the ventilator and lots of rest she was looking and sounding much better. Praise God! I hate watching that girl have such a hard time breathing.



About a month ago we adjusted Faith's feed schedule to a more concentrated formula. At about the same time she had been diagnosed with another UTI, for which she was prescribed an Anti-Biotic for a couple of weeks. For three weeks Faith started throwing up a large amounts of her Feeds. Faith started to loose weight. I was so sure that we were giving Faith to much fluid with her new feed schedule. The doctors told us to wait it out, maybe her stomach wasn't agreeing with the antibiotic. After Faith quit taking the antibiotic she still was having difficulty with her feeds. Of course this was about the time she got sick. If your pulling your hair out by this point in the story, don't worry, so were we. An Xray this week revealed that Faith's stomach manages her fluid very well. PTL! While it may have been the antibiotic or the illness, we don't know, but she does seem to be tolerating her feeds a little better. Only time will tell and hopefully she stats gaining weight again soon.

Last week we had an ENT appointment to look at Faith's upper airway. Last time this procedure was done Faith passed out twice, and nothing was able to be determined. Conveniently Faith was sick during this appointment and she didn't seem to have the strength to get mad and pass out. So she sat there and whimpered while the doctor took a look at her vocal cords. We obviously had our hopes up that Faith's vocal cords were back to fully functional. As it turns out one is only showing partial mobility and the other is showing very little. This was a little difficult for both of us to hear, but the Doctor was still open to taking steps toward removing the trach. This will be a long process, but we were glad to find out that its still a possibility. Please pray for her continued progress in this area.

Sorry to barrage you with so much information. Please know that Faith is doing really well. She has been very happy and seems to be her old self the last couple of days. Hopefully she stays that way for the remainder of the winter.

We love you all!

Thanks for your prayers