Nora had a bronch/scope 2 weeks ago to evaluate her airway. The ENT said things had gotten worse, and was encouraging us to start treatment soon. It was disappointing to hear-I was secretly hoping things had improved.
I talked with Seattle and it was decided we would shoot for mid-August. Things have been slow going because Nora is the first one doing the diet for this reason, so they are trying to get things set up.
Last week during an apt with the ENT, Nora had another scope because she was making a 'honking' noise when she breathed. The scope showed that her airway was collapsing. They were able to give her a longer trach right away to hold it open. It had gotten worse since the scope the week before, which was not nice to hear.
Nora has been sick the past couple days, so we had an appointment today to check her airway again and see how things are going.
The ENT was saying that with the new/longer trach, things are fine for now, but there is no way of telling how fast things will progress. Things have digressed pretty quickly recently, and there is no way to know how things will go from here on out. After a certain point, there is not much they can do for her. The ENT was saying that she's been talking with the other doctors and they are all very concerned. She had been ok with us trying the diet before, but now she is thinking that it may be unwise since things aren't looking very good. If Nora were more stable it would be ok to try experimental things, but she feels like we should try something that is proven (Sirolimus). Although there is no guarantee that help either.
So, we don't know what to do. We really wanted to try the diet first but we don't want to be foolish. But there is no guarantee that either options will do anything. I am going to try to get in contact with the Seattle Drs and see if we could start it soon/really soon (the two main ones are on vacation right now-of course). If they can't do it soon, we will probably try the Sirolimus.
For those of you that are praying, we can't thank you enough. Please pray that things would not get any worse. It is scary to think about. Especially while I am with the doctors and they are asking me how I'm doing while giving me sympathetic/worried looks that remind me that things really aren't good. But-God is good, and I know that He is in control. And worrying isn't going to fix anything. It reminds me of a song from when I was younger,
"Things are looking right for a miracle.
There's no reason I should get hysterical.
Open up the doors, God you've done it before.
Things are looking right for a miracle"
Good old Steve and Annie Chapman:) We have already seen God do miracles in Nora's little life, and we are praying for some more now.
Please also pray for Evan and I as we decide what to do. We don't want to act out of fear-please pray that we would know which is the best option. If it is Seattle, please pray that things would come together quickly. If it is the Sirolimus, please pray that we would have a peace about it. We will be going in weekly to keep a close eye on her airway, but we would like to do something soon.
A huge answer to prayer-her tongue is back to normal color and hasn't bled in almost 2 weeks! That has been SO nice-much less laundry too:)
Aside from the airway issues, Nora has been doing well. She is a very happy, content little girl:) I can't believe she is 8 months! She is starting to wave and trying to climb up on things-a little monkey just like her big sisters:)
Thank you again to all of you that are praying, we are so blessed
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