Sunday, October 10, 2010 4:26 PM, CDT

Just a little update.. things with Elizabeth are still going well. Another little lack of communcation regarding how rooming in works, apparently we both ARE allowed to sleep at night, so they gave us a cot to go along with our chair today. To bad they gave it to us after 2 nights of one of us struggling to stay awake ;)
The Apnea monitor continues to go off in her sleep, but again shes still breathing so not a big deal. We voiced concern over ENT still not stopping by. We thought it was odd because our ENT DR is awesome and very unlike him not to come by when requested, and this request was put in on Friday. So after asking a few times yesterday and today the PICU Dr finally called him, he was under the impression that his decision had already been relayed to them. He does NOT want to give her a larger trach, he feels she is too little right now to upsize it again. And that the current size is working well for her and does not want to make changes, which we totally agree with (maybe thats why I think hes awesome!) He does think the swallow study is a good idea to see if we can start giving her baby food, and said he will look at it himself to be sure about the results. So we are scheduled for that sometime tomorrow. She will still get her formula feedings via gtube. Sometimes kids who are only tube fed and never eat by mouth will get an aversion to food and not want to use their mouths or eat real food later on. We want to avoid that if at all possible, so thats why we are pushing for a swallow study.
Our first time resolving an issue while rooming in happened this morning. Matt was sleeping and I was taking care of Elizabeth. Her oxygen saturation started dropping and I tried to suction her and could not get the catheter down her trach all the way. Which meant that there was some mucous AKA gunk blocking her airway. I tried a few times and could not get it all the way in to the trach to suction so I woke Matt just in case we had to do a trach change. We were able to loosen some of the gunk up by putting saline down the trach and were able to get the gunk out.  I think we did well for our first issue, we did not have to ask for help from anyone and we both remained calm. The most stressful part of her daily care is actually taking the guaze out from under her trach and replacing it! This kid has no neck and its so hard to get it put back in place. We both get stressed out even thinking about having to do it, and we know it stresses her out. So we some things we need to work on as far as finding an eaiser way to do some things but I think we are both feeling comfortable about going home and caring for her.