Tuesday, February 17, 2009
Vent Clinic
We had our first vent clinic appointment today. It is scheduled for 12:30pm but it is first come, first serve so we got there a little after 11:00 and we were 4th. At 12:30 they come in and get x-rays, take blood, talk to you about how things are going, and a dietician comes in to talk to you. At 1:30pm the dr. and team makes their rounds to see if we will be making any changes to Autumn's vent settings. Well, we told them about the more frequent desats and the dr. recommends us going to see a neurologist to make sure Autumn is not having sub-clinical seizures. We have had 2 sleep tests that did not show signs of seizures but they said they are not the best indicators. So, I need to call Scottish Rite to see about getting in to the neurologist. We talked about her feedings and weight gain and apparently Autumn needs to gain more weight. WHAT! She is a little chunk but I guess she is still not the size she needs to be. So, they said just give her bottles as often as she wants and to continue with the cereal. They said to hold off on baby food until she is closer to 6 months. They did not change any settings on her vent since she is still having issues and will see her back in April to check her again. Her CO2 levels were REALLY good as well. So, we finally got done at 3:00pm. They did call us once we left and said her blood sugar was low and wanted to know if she ate and if she was alert. She had eaten and was acting fine so they were okay with that so I am not sure just how low the levels were. Last night Autumn did great. James stayed up with her until after her 1:00am treatment and then I got up with her at 4:00am to feed her and then up at 7:00am for her treatment. She did not need oxygen at all last night and never had even one desat so I think it may be time to try to wean her off oxygen at night as well. :) So, tomorrow we have no plans and then one more appt. on Thursday afternoon to see the ENT.
Subscribe to:
Post Comments (Atom)
1 comment:
Hi Lacy,
This is Jimmy, father of Alex (from the SB msg board). I'm at the hospital right now, with Alex on the vent producing mucus like she's a snail.
Nicole left your blog open on the computer & I've been reading through it all morning, amazed at the parallels in our spiritual journeys. These blogs are such powerful tools for reaching others, and I know that they are a big part of God's plan for our children (and us). Like you, I don't question God's will, although I do try to understand it and one thing is clear: the troubles our little girls are experiencing are bringing many other people closer to God.
When I was praying for Alex to be conceived I told God that I wanted her to be a "child of God." Not in the generic "we're all God's children" sort of way - but a real champion for his will. I had no idea what that even meant, but I clearly see during the tough times that he is indeed using her for exactly that purpose. I'm sure you understand this very well, but when things are "normal" we tend to grow closer to the world and farther from God. It's such a struggle, though - I mean how can you ask for him to bring you pain & strife, when it goes against everything you feel inside for your child? You can't. But sometimes when we pray for his will over everything else, that's exactly what we're doing. It's like God asking Abraham to sacrifice his son - he wants to know that our love for him is greater than anything else in this world.
I do know that Alex has touched more people in her 6 mos of life than I have in my 34 yrs, and that's no exaggeration. This has to be the biggest challenge a person can face in their lifetime: putting God's will before their own child's happiness & well being. But God understands this - it's exactly what he did with his son.
I'm not sure where all of this is coming from - maybe this is something I should be posting on my own blog instead of yours. ;) But I know you can relate - because you're in a very similar place.
It breaks my heart to see that Autumn has to have the trach, and your post titled "Prayer fast" brought me to tears. Just know that your strength is an inspiration to others in ways that you can't possibly imagine (until, of course, some stranger rambles on and on about it on your blog).
-Jimmy
Post a Comment