Wednesday, August 13, 2008

Sleep Lab Results

The sleep lab results came back today. Elaina gets her c-pap! In fact, the results have started quite the commotion here! Elaina has severe obstructed sleep apnea. They told me that she had 20+ episodes every hour that they were monitoring her. They also recommended a follow up by the ENT team (ear, nose, throat) as soon as possible. So they came by today and after a thorough examination, it's been decided to take her to the OR for a scope. I'm little confused as to what they are doing, after I got back from break tonight the nurse was calling it a bronchoscopy, and I know that she had one of those a while ago when she was intubated. Anyway, from what I understand, they are going to put a little camera down her throat to see if they can find any obvious obstructions. I'm not quite sure what will happen if they do, but there's got to be a cause behind her apnea, so we'll just wait and see!
I also have a Care Conference scheduled for Wednesday afternoon. I'm having one because I want to be able to talk to not only Elaina's team in the PICU, but her Cardiologist as well to make sure that we're all on the same page. We're also going to discuss the whole Stanford thing. I know that they started the referral last week, but they told me it could take up to a month to hear anything back. Anyway, I want to know what Elaina's cardiologist thinks about the idea as well as what his future plans are for Elaina. I'm preparing myself for the worst case scenario. They haven't given me the most positive outlook so far, so I'm not fooling myself into thinking that it's going to change dramatically just because I asked for a care conference.

So today was hectic busy, but that seems to be the norm here. Elaina still had her fever today. She's got the team pretty confused. They're starting to wonder if the fevers are a sign of heart failure, but she doesn't have any other prominent symptoms that would point to that, so it's just got everyone puzzled.
Well, I am totally completely exhausted. I didn't find out until 11pm that I didn't get a sleep room, I was on the stand-in list (in case one of the other families went to a hotel or something) but I didn't get lucky this time. Oh well, I'll sleep on the pull out in Elaina's room. It's not the most comfortable thing in the world, but it sure beats sleeping in my car!

Please help me pray for my friends the Bailey's. Their daughter Brooklyn isn't doing well. She's just one month old and the doctors don't think that there is anything else that can be done for sweet Brooklyn. She's got so many clots caused by procedures that they don't know how much longer she'll be able to hold out. Her family has been given the "talk" and now have to make the hard decision regarding Brooklyn's life. I know that prayer is what has gotten Elaina and I to this point and I have faith that the Bailey's can find comfort and the answers that they seek.
Thanks for all the love and support!!


Vanessa said...

I'm so glad they found this out now. I know it's one thing after another and you must be exhausted. Your an amazing mother and Elaina is so blessed to have you as her mommma.

I'm glad your getting this care conference and hopefully you can get a clear picture of what's happening.



Sherri - KaysvilleMomma said...

Wow!! Have they thought about doing a spinal tap to see if they can figure out more about the fever? Who is her cardiologist?

Vaeh's Blog said...

Wow... another speed bump. That's all they are, just bumps. She's made it this far, & obviously God has a plan in store! Praying that all goes well with the scope & they get some things figured out.

We'll certainly keep the Bailey's in our prayers!


Heather said...

I hope it's a relief for you that they found the sleep apnea. She'll sleep much better on the cpap.

Interestingly enough, I'm going in for a sleep study mid sept. They think I've got sleep apnea.

We're praying for you always, and your blog is the first thing I check each morning.

BTW, Sean REALLY wants Ben at his bday party in 2 wks. I explained to him how difficult it was, but if this is something that we can work out, call or email me.

take care,


Kathy said...

Hey sweet mama...
If anyone hasn't told you today...youu're doing awesome! I'm glad they did that sleep study...I mean, it's one more piece of equipment in our house...but, GEEZ, imagine how hard her little body would have to work at night if she didn't have it!
And...just so you know...if your hospital has already sent the records to Stanford, they are quick to respond. We've had to overnight docs to them for Isaac, and been life flighted the next day. (they don't make these sick babies wait..especially if they think they have an immediate plan of action). have an IN with Dr. Z...she'll tell you how conference went (she's got connections!) We were there for unexplained heart problems back in January, and she saw us in the cafeteria...and knew exactly who we were and why we were there (because they just had conference about us).

Trust me...if there is another procedure that can be done...Stanford is the ONLY place I'd send my baby to. AND...they will be honest in their recommendations...they will not tell you to come out to "try" a procedure.

and that fever...Isaac ALWAYS has them, and they can never figure them out. (and he still does at home)...It's got to be something related to how hard their little hearts have to work (or their immune's working harder than the normal baby too).

Keep being strong.
I have a CRAZY sister that lives in Utah..I can tell her to go and visit you and hug you for us! (she has a 6 year old son too)...we'll have to get the kids together one day!!!

Please let me know if you need anything. (especially if you get word from Stanford...)
thanks for the update...and don't forget to tell us if they see anything with the scope!!!
lots of love,

Kelly said...

Wow! At least now they can figure out what's going on. It's too bad it took so long to figure this out. I hope your conference goes well. It sounds like you're being very realistic about Elania and her care. You're an awesome Mommy to her!

I just read about baby Brooklyn. God doesn't need another angel named Brooklyn... he has my angel Brooklyn. I will certainly be praying for her and her family!

Isabella said...

Our prayers are always with you.