Sunday, July 24, 2011

Windshield Time

This week Faith will be seeing the ENT and the OT at Children Mercy Clinic.  On Monday we will see the ENT for a trach check.  Faith received a larger trach about three weeks ago.  She went from a 3.0, which is the size she had placed originally, now moved up to a 3.5.  Kinda fun, just shows she is growing!  The ENT will just be following up with us.  I really hope it is an easy appt. with no complications.

Then on Tuesday we will be seeing Faith's OT.  This is a very big appt because she will be starting to practice putting fluid in her mouth.  She will be having a swallow study on September 9 and this is to help her practice.  She hasn't had anything in her mouth except for toys and her pacifier.  We all take drinking and eating for granite. One thing she has to learn is what to do with her tongue when there is a substance sharing that space.  She will also have to learn how to swallow larger amount of fluid.  The only thing she is swallowing now is her own saliva.  If she does well and passes the swallow study then we will be able to start giving her bottles again!  I really pray that she adapts to all the new things that will be going into her mouth.  I will also pray that she will continue to breath while she is swallowing.  Before when she would drink from a bottle she we would have to turn her oxygen up and she would also drink to fast.  I will keep you all posted.  Thanks so much for all your continued support with our baby Faith!

Tuesday, July 5, 2011


6 Months Old!
Hard to believe it has been 6 months!She is growing so well! She is now 17lbs and still a happy baby! She has three teeth all in front and on the bottom. I can start to feel something on the top so we will wait and see when their going to come in.

We went to clinic and saw the Pulmonologist at Children's Mercy, he recommended a bi-pap machine for Faith. This bi-pap will help with her levels of CO2 and help keep her lungs open all night. This machine blows air into her lungs and opens them and then pulls air out. I think this is going to be a good machine to help possibly get her off the oxygen during the day. If she can get her lungs open so she can take deep breaths then she won't need any help! Also, while we were there today we were talking about how Faith has been growing but yet she has the same trach as when it was originally placed. He sent us down to x-ray and then back to his office. He spoke with Faith's ENT and decided it was time for a new larger trach. I think this new larger trach will be more comfortable for her.

On Monday we went back to CMH via ER. Mic and I were telling Faith that we want to come home tonight and NOT be admitted as inpatient. When we arrived we went right to a room. (I guess if you have a shunt you get moved to the top of the list-no questions asked.) The nurse asked us and what brings you to the ER today? We found blood in her diaper. They changed her diaper to get her weight and there was more blood. The nurse said I am glad you brought her in. That made me feel better since we were thinking about waiting and calling in the AM. They took a urine sample and while they were getting it blood was coming out along with urine. They tested it and came back and said UTI. This would be Faith's third UTI in less then a month and a half. So there is some concern. We wait and see how she does on the drug they want her to take. Pray that it works!