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

Past Two Months

Faith has high blood pressure so it is monitored in Clinic. Her last appointment was in the middle of December. While we were there her urine was checked to make sure it is clear and with no infection. We have started to use a catheter every 4 hours to help her empty her bladder so she doesn't reflux it up into her kidneys. With that being said she is at higher risk for UTI (urinary track infection, so her urine was checked at that appointment and was positive for a UTI. They "dipped" her urine and can tell if there is an infection, but if it is positive then they send it to the lab for 48 hours to let the infection grow so they know how to treat that particular infection. So I called CMH Clinc many many times to get directions on what I was suppose to do, or if I need to pick something up from the pharmacy. No one called me back and when I did talk to the nurse she seemed to think if wasn't a big deal. So I let it go, NEVER AGAIN WILL I DO THAT! In January and Feburay we went to the ER twice for a high heart rate and a on and off fever. Get this all due to the UTI that wasn't treated! She has had two or three UTIs in that past 2 1/2 months. If been scary at times, not knowing what do to. And when you look at Faith you just think I am so sorry after all you have been through now a stupid UTI all because that clinic office didn't seem to think it was important. On this last Monday we dropped off Faith's urine to be "dipped" at Faith's local Topeka, primary peds doc they told me it was clear (THANK YOU JESUS) then they called later in the week and said the lab didn't find any infection either!!! Best news in three months! Due to her UTI and fevers and just feeling under the weather we were not able to feed Faith anything orally. I am praying that she can start that baby food up again soon.

Two days ago Faith started acting not normally again. So what I am saying is she had about three days of normal Faith and now she is back to sick again. Lots and lots of mucus, fever on and off, and we go to the doctor tomrw but it really wasn't for this it was for seeing the ENT and her primary doc at Children's Mercy. Praying that we can get Faith back to health so we can start talking more about getting this Trach out of her. Side note: that won't be for a while but I LOVE talking about it!! Praying her doctor appointment goes well in the morning.

Please pray for Faith's health and patience for Mic and I. Thank You!