Back in the hospital 12/4/22

 Taylor had several blood clots come out tonight, so we are headed to the hospital.  They weren’t huge (about the size of a quarter), but we were told to come in.  To my limited knowledge on this it seems like she probably has another bleed.  I was pretty upset when we were packing for a possible hospital stay.  Randy pointed out that at least we know what the problem is this time, so we aren’t starting out blind like we were before.  Will update as we know more 💓

Her hemoglobin dropped to 5.2 so we are getting admitted.  It sounds like blood is maybe leaking and pooling inside ready to drop again 😞 ugh.  This is lame sauce you guys.  I hope they do the surgery sooner than later.  I’m so glad we took her in tonight!

We finally got a room.  She’s going to get 2 bags of blood tonight (today I guess since it’s 3am 😅).  They will likely do a scope when her hemoglobin is at a healthy level.  They will tie off any bleeders while in there.  The doctor said she will likely have some big bleeds coming up since her hemoglobin is so low (it’s working it’s way through her system).  She’s NOT happy about 2 IVs again and not thrilled to be back here.  I’m glad we came in.  Also, that doctor we really liked last week is our doctor tonight!

We talked to several doctors this morning.  A little later she will get an ultrasound of her belly, to see if they can see what might be going on, and then do a scope after that.  I asked if we could have the surgery moved up because we don’t want to be back here weekly getting several units of blood and scopes (😬😬😬).  The doctor said he was leaning that way, for the same reasons.  The team will talk her situation over.  I think they are waiting to see what they find out with the U/S and scope.  I’m dreading the scope/tie off bleeders procedure for her.  Last time, it was very painful and it hurt for several days.  Her second unit of blood is already running.  We are on the liver floor this time around, and people seem to know better what is going on.  So that’s good!!

We just talked to her doctor/surgeon and the scope went well.  She has pretty advanced Varices and it goes below her stomach.  He was not able to tie those off because of how far down those were.  He did tie some off, but there are still some bleeders.  He wants to do surgery ASAP because of that.  She is on a medication to slow down bleeding right now.  But she’s still bleeding… He explained the surgery in depth that she will get.  My mind and heart are so much more at ease now, and I do believe it’s a really good option for her.  Not all hospitals do this surgery, but ours does!  The surgeon who will perform it is the best in the world!  Since Taylor likes to be extra special, this condition and surgery are so rare that they only do one a month 😅 the doctor said, long term, kids do really great with this.  Hopefully tomorrow she will get the scan to see if she is a good candidate for it!  


One more thing, we are being SO WELL loved by soooooo many people!!  Like so loved, and I feel so humbled and thankful.  Thanks for praying and caring, friends!



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