... as if seven days a week, for three months wasn't already considered the long haul, but now it's really becoming apparent that we have quite the road ahead of us.
We experienced another failed extubation attempt today. This time they tried the Vapotherm machine, and then the regular CPAP machine, and the results were the same as before. She struggled way too hard from the very beginning.
The pulminologist was here today during the time Eden was off the vent so that she could get a good look at her. Going into this today I had the feeling that she would be back on the ventilator by the end of the day but I was just hoping that the pulminologist would be able to find some reason it wasn't working - something that the ENT and the neonatalogist were missing.
Unfortunately, her analysis in regards to the airway came to the same conclusion as the others. She couldn't find anything wrong. She did a bedside scope of both her upper airway and lower airway and she didn't find anything.
The past couple days I have been talking with the doctors and nurses about the possibility that maybe it was her nose that was the problem. I had confirmation about my suspicion the other day when she had her accidental extubation and she was throwing up. I noticed that throw up was flowing out of her left nostril, but nothing was coming out of the right (sorry, kind of gross, but totally relevant!).
So that day we tried passing her feeding tube through both nostrils and there was no problem getting it through which then made me think that maybe there really wasn't a problem. However, the pulminologist tried to put her scope through both nostrils today and it would only fit down the left side. Her right side was much more closed off. The saga continues...
So they were saying they could do a cat scan to get a better look at her passages and see how severe the narrowing is. The thing is though, if there is something wrong with her right nostril it can be fixed by surgery but they won't do the surgery until she is much bigger. So there's really no point in pushing the issue right now. They don't know if this problem is really severe enough to really be the reason for so many failed extubations anyway.
So now we're stuck... we have no where to go and nothing to do except wait until she gets bigger. Maybe it's something she will just grow out of so we will wait and see. Get this... the next attempt isn't even going to happen for 4 weeks. 4 WEEKS! Wow, it's going to be a long month.
Who knows when we'll ever go home. We know we have a month to wait for another trial. At that point, if our prayers were answered and she was able to stay extubated, she could begin to learn to eat, and we realistically would still have anywhere from one to two, maybe even three months getting that down. If our attempt in 4 weeks doesn't work... well I don't even want to think about how long we will be here.
So we're rolling out the comfy chairs and settling in for the long haul. I have a feeling this blog is going to get really boring for a while. We'll try to remain positive and just take it one day at a time and enjoy our home in the hospital with Eden.
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9 comments:
Argh! I am so sorry. That is a huge bummer! I'm totally frustrated that they can't figure out what is going on with Eden and she's not even my baby....I can ONLY imagine what you guys are going through. If you guys organize a group/ward fast let me know because I would love to participate (if you wouldn't mind:)
Alright, well this sounds a little "stalker-ish" but I thought I'd let you know I've been lurking on your blog for awhile now. I'm Katie (Barnum) Hess and I'm a friend of Brad's from FV. I found your blog through Hillary Haynie's.
I've been reading for awhile and I like to check often to see how little Eden is doing. I have 2 little girls and a baby boy on the way, so I can't imagine all what you're going through, but my heart aches for your little family. I thought that you could use a little extra encouragement today and I just wanted you to know that you had another fan cheering you all on. You can all do this, and I know that you'll be blessed! Eden is so adorable, and you are a wonderful mother to make her your number one priority. From Hershey, Pennsylvania I'm cheering you on, Lisa.
Oh man, guys. Not the news you wanted obviously. I agree with Jen-each time I see another obstacle in your way, I just get upset for you, even though she's not mine. What a sweetie she is, though, and those cheeks just kill me. So cute. Hopefully the answers will come soon. Hugs to all of you! Angela
Gosh you guys. I'm so sorry to hear about the wait you're in for. My heart just dropped when I read this post. I can only imagine how frustrated, sad, and out of control you must feel at this point.
Please know we're all rallying for you! Hugs and kissed to Eden.
When Brad told me the news I could not believe it. I am so sorry guys... I don't even know what to say... We love you!!!
So sorry, that is so sad...I can't believe you will be there for so long...we all are praying for you and sweet little Eden!
Oh, I am so sorry to hear the news, my heart goes out to you guys. You'll continue to be in our prayers, be sure and let us know as well if you decide to do a fast.
By the way Eden is adorable, and she is so lucky to have such wonderful parents who are there with her everyday!
Ah, man!! I have a ton of DVD's if you need some movies to watch!!
Dang... I am so sorry to hear the news. You will continue to be in our prayers. Eden is such a doll... so dang cute. I wish she (and you) didn't have to go through this. Especially when knowing the cause seems so out of reach. I hope that you are able to get some answers fairly soon. Please let us know if there is anything we can do for you!
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